Wow!! My last post was November 9th!!! Shame on me.
A lot has been going on. Well duh, its been almost two months!
Let's see, where to start.
Things had steadily improved with me. I started driving again, started going out of the house, heck I got a bike for my birthday and have rode several times with Miss Piper. I would say that things were looking and feeling much better! My pain levels seem to be under better control and the drowsiness and sluggishness has finally gone away. As far as sleep goes...well that is still a constant battle but I will take the little victories for now.
I had my follow up with Dr. W at the beginning of December in Baltimore. He was pleased with my progress. We discusses changing the setting of the shunt but decided against it because he feared that might do more harm than good. He made it very clear to me that my body and my brain have been through a tremendous amount in one year and I need to take things slowy. I cannot expect to be right back where I was a year ago in just a week. We also talked about what to expect in the future. Unfortunately, shunts do not last forever. They typically only last 2-6 years and then they will have to be replaced. Sucks, I know. But as Dr. W said, you cannot go around everyday just waiting for it to fail, you have to live your life. The plan is to go back and see him in 6 months unless there is a problem then I will see him before then.
He did agree that if I wanted to try going back to work part-time then that would be okay. He did stress the part-time and wants me to take it slow. Wes and I had thought about me filing for permanent disability (which I would more than qualify for) but I really want to be able to work! Crazy as it may be, I miss my job. So after much deliberating and soul searching my first day back was on December 14th.
So how has work been going. Well....its been hit or miss. more on that later.
I am still seeing my awesome Pain Management Doctor and he truly has been a life saver. I really think if it were not for the pain meds I take daily I would not be able to make it through each day. Through my appointments with him, he has also diagnosed me with Chronic daily Migraine. Fun times, kids.... He says this is quite common in people with Intracranial Hypertension. As time goes on I am now able to tell the difference in a pressure headache (Intracranial Hypertension) and a Migraine. There are different ways to treat the two of these so knowing which one I am having at that given moment helps me in determining what medicine to use.
So things had been going really good and then the week of Christmas I started to feel not so good, and to be honest I have just not felt very good since. Sigh.......
At first I just thought it was the stress of Christmas but now I am starting to get a little worried that maybe my shunt is malfunctioning. I have had some ringing in my ears and several episodes where my vision has become blurred and spotty. Dr. C, my pain management Doctor wanted me to try a three day course of Relpax and prednisone this week but after two days of that I just could not take it anymore. This medicine make me so sleepy and tiered and just plain ughhhh. So I took the medicine on Tuesday and Wednesday and said NO MORE. Thank goodness the girls went to there dads today (Thursday) I slept till 4:30 this afternoon and that's with me going to bed at 11:30 last night!!!!! See I told you this medicine was evil!!!!
Remember how I said earlier that work was, key word was going good. Well this week I have only been able to work one day. Sighhh.. thats not good. Basically I think I am going to half to break down and call Dr. W in Baltimore and see what he thinks is going on. I don't know if maybe I need another Lumbar Puncture to see what the pressure is or what?
I really wish this would go away. I think my family seems to think it should have. Somehow I don't remember being told that? Will they ever just accept that this is a part of who and what I am now? This has got to be one of the most fustrating parts of this disease, helping other people understand. It is just not magically going to go away, it does not work like that.
So that is my update for now. They are calling for snow here and thats always fun...
I will make some calls tomorrow to Doctors and hopefully start the ball rolling to find out why I was feeling so good and now feeling so bad.
Showing posts with label Shunt. Show all posts
Showing posts with label Shunt. Show all posts
Friday, January 8, 2010
Tuesday, November 3, 2009
Number 4
Number 4
That’s right number 4. This is the fourth surgery I have had since March. I am beginning to become an old pro at this. If that is at all possible.
This surgery was a little different in a few ways.
For one thing, this time they put the shunt on the left ventricle on the upper left side of my head whereas in the past surgeries they had placed the shunt in the right ventricle in the lower right side of my head. The reasoning for this is there has been so much trauma to the right ventricle and it basically is becoming harder and harder to go in on that side. I have tiny ventricles to begin with so the extra trauma is not helping. Typically they (neurosurgeons) do not like to go in on the left side because it is a more complicated surgery and poses more risk. What are those risk you ask? Well to be honest, we never asked. LOL. It had to be done and frankly in this situation I would rather be ignorant.
The seconded thing that was different was that Wes could not be there. He had flight training and well, unfortunately the last day of training was on Friday. He would finish up his training in Charlotte and drive to Baltimore.
I was also surprising clam going into this too. Heck after four surgeries in less than a year you tend to become rather calm about the whole matter. Mom and I drove up the day before and Dad flew in. I did not sleep much the night before but was ready to get going.
Pre-op seemed to take forever. This time I had an extensive meeting with Anesthesia. During my last surgery my jaw locked up and my mouth clenched tight causing problems with airway tubes. This can be as a result of repeated surgeries and being put under anesthesia many times. We were told for future surgeries to let the Anesthesiologist know about this so that they could be prepared to deal with it if this should happen. To try to prevent this from happening they used a different type of medication to put me to sleep and as a caution had equipment in the operation room that they would need just in case. By the way, my jaw did not lock up and the Anesthesiologist did come by to check on me two days later, (I thought that was impressive because she certainly did not have to, in fact this is the first time I have ever had one check on me afterwards) she said that because they had the information of what had happened last time they were able to use different medications and that helped prevent an ugly incident. She was very nice.
So a big hug and kiss from Mom and Dad and off I went.
The next thing I know I wake up from surgery and OH MY @%#^@%^!!!!!! I have never felt pain like that before in my life. Between my neck and my head I am not sure what hurt more. Apparently, one reason that they do not like to do shunt placement on the left side is because it involves a lot of tunneling in the neck. Um yeah. I can attest to that.
As for the pain, they were doing a really horrible job controlling it. Let me remind you all that these days I see a Pain Management Doctor and with that I have simply graduated from most simple types of pain relief. They had me taking something right out of surgery that I already take at a higher dose three times a day every day. Now I am not a Doctor and do not claim to be one but HELLO!!!!!!! This will not work. So needless to say my first night after surgery was horrible. So Wes (he got there Friday night around 10) asked nicely about finding something better to control the pain, when that did not work he had to get firm about it. Finally I had relief. Well, as much relief as could be expected.
To be honest much of Friday thru Sunday is mostly a blur. Between the agonizing pain and the medication I just do not remember much. My in-laws were in Pennsylvania visiting my brother-in-law and his family and heading home so they stopped by for a brief visit which was wonderful.
Overall I have to say that I am somewhat disappointed with the aftercare this time around by my Doctors and Sinai. My pain management afterwards was less than adequate. My Doctors knew what my current medications where and did not seem to take that into account. I also had a Nurse Practitioner from you know where come by to see me on Monday morning. She walks in, never telling us her name and says “Okay your times up, time to go home”’. Ummm I don’t think so. That was not the only thing about her that hit me wrong but I think will refrain from discussing it further. Let’s just say a call was made to Dr. D’s office that she was to never set foot into my room again.
I guess the most disappointing thing about the aftercare was that we had to call Dr. W and Dr. D’s office to see if they were going to come see me before discharge as by Tuesday neither of them had. I did see Dr. W and he does not want to see me again until mid December or early January. I have yet to see Dr. D. Even going up for my post-op appt she had an emergency surgery and I had to see her PA. I know that cannot be helped but what could be helped would have been for her to see me in the hospital before I left. I was discharged on Wednesday and very ready to get home.
From this surgery I left with 25 staples in my head and neck. (yes, Wes counted) I also had incisions in my abdomen that were done laparoscopically. As for my hair, they basically parted it down the middle and shaved the entire left side. Yep, you read that right, shaved the whole left side. When I got home I went to my hair stylist and had her match the right side also. My previous surgeries they had shaved the bottom right side and I was able to camouflage it, this time there was no camouflaging what had been done. I mean really I was only left with a patch of long hair at the top right of my head!!! What was a going to do, a comb over? Believe me I tried, it just wasn’t happening.
I now am the proud owner of a ton of scarves and also a beautiful wig of long brown hair that looks quite fabulous!! I took Wes to help me pick it out and to tell you the truth it was very traumatic. I never dreamed in a million years I would be looking for wigs.
As for the question that is on everyone’s mind- I am sorry to say that No, my headaches are not gone. They are still very much here, still hurt and I just don’t know if they will ever go away.
That’s right number 4. This is the fourth surgery I have had since March. I am beginning to become an old pro at this. If that is at all possible.
This surgery was a little different in a few ways.
For one thing, this time they put the shunt on the left ventricle on the upper left side of my head whereas in the past surgeries they had placed the shunt in the right ventricle in the lower right side of my head. The reasoning for this is there has been so much trauma to the right ventricle and it basically is becoming harder and harder to go in on that side. I have tiny ventricles to begin with so the extra trauma is not helping. Typically they (neurosurgeons) do not like to go in on the left side because it is a more complicated surgery and poses more risk. What are those risk you ask? Well to be honest, we never asked. LOL. It had to be done and frankly in this situation I would rather be ignorant.
The seconded thing that was different was that Wes could not be there. He had flight training and well, unfortunately the last day of training was on Friday. He would finish up his training in Charlotte and drive to Baltimore.
I was also surprising clam going into this too. Heck after four surgeries in less than a year you tend to become rather calm about the whole matter. Mom and I drove up the day before and Dad flew in. I did not sleep much the night before but was ready to get going.
Pre-op seemed to take forever. This time I had an extensive meeting with Anesthesia. During my last surgery my jaw locked up and my mouth clenched tight causing problems with airway tubes. This can be as a result of repeated surgeries and being put under anesthesia many times. We were told for future surgeries to let the Anesthesiologist know about this so that they could be prepared to deal with it if this should happen. To try to prevent this from happening they used a different type of medication to put me to sleep and as a caution had equipment in the operation room that they would need just in case. By the way, my jaw did not lock up and the Anesthesiologist did come by to check on me two days later, (I thought that was impressive because she certainly did not have to, in fact this is the first time I have ever had one check on me afterwards) she said that because they had the information of what had happened last time they were able to use different medications and that helped prevent an ugly incident. She was very nice.
So a big hug and kiss from Mom and Dad and off I went.
The next thing I know I wake up from surgery and OH MY @%#^@%^!!!!!! I have never felt pain like that before in my life. Between my neck and my head I am not sure what hurt more. Apparently, one reason that they do not like to do shunt placement on the left side is because it involves a lot of tunneling in the neck. Um yeah. I can attest to that.
As for the pain, they were doing a really horrible job controlling it. Let me remind you all that these days I see a Pain Management Doctor and with that I have simply graduated from most simple types of pain relief. They had me taking something right out of surgery that I already take at a higher dose three times a day every day. Now I am not a Doctor and do not claim to be one but HELLO!!!!!!! This will not work. So needless to say my first night after surgery was horrible. So Wes (he got there Friday night around 10) asked nicely about finding something better to control the pain, when that did not work he had to get firm about it. Finally I had relief. Well, as much relief as could be expected.
To be honest much of Friday thru Sunday is mostly a blur. Between the agonizing pain and the medication I just do not remember much. My in-laws were in Pennsylvania visiting my brother-in-law and his family and heading home so they stopped by for a brief visit which was wonderful.
Overall I have to say that I am somewhat disappointed with the aftercare this time around by my Doctors and Sinai. My pain management afterwards was less than adequate. My Doctors knew what my current medications where and did not seem to take that into account. I also had a Nurse Practitioner from you know where come by to see me on Monday morning. She walks in, never telling us her name and says “Okay your times up, time to go home”’. Ummm I don’t think so. That was not the only thing about her that hit me wrong but I think will refrain from discussing it further. Let’s just say a call was made to Dr. D’s office that she was to never set foot into my room again.
I guess the most disappointing thing about the aftercare was that we had to call Dr. W and Dr. D’s office to see if they were going to come see me before discharge as by Tuesday neither of them had. I did see Dr. W and he does not want to see me again until mid December or early January. I have yet to see Dr. D. Even going up for my post-op appt she had an emergency surgery and I had to see her PA. I know that cannot be helped but what could be helped would have been for her to see me in the hospital before I left. I was discharged on Wednesday and very ready to get home.
From this surgery I left with 25 staples in my head and neck. (yes, Wes counted) I also had incisions in my abdomen that were done laparoscopically. As for my hair, they basically parted it down the middle and shaved the entire left side. Yep, you read that right, shaved the whole left side. When I got home I went to my hair stylist and had her match the right side also. My previous surgeries they had shaved the bottom right side and I was able to camouflage it, this time there was no camouflaging what had been done. I mean really I was only left with a patch of long hair at the top right of my head!!! What was a going to do, a comb over? Believe me I tried, it just wasn’t happening.
I now am the proud owner of a ton of scarves and also a beautiful wig of long brown hair that looks quite fabulous!! I took Wes to help me pick it out and to tell you the truth it was very traumatic. I never dreamed in a million years I would be looking for wigs.
As for the question that is on everyone’s mind- I am sorry to say that No, my headaches are not gone. They are still very much here, still hurt and I just don’t know if they will ever go away.
Friday, October 16, 2009
Update
I've been bad.
I have not updated like I should have but to be fair my eyes have bee hurting so much and the instances of blurred vision and black out vision make it kind of hard to be on the computer let alone type.
The testing in Baltimore went like thy thought it would. DUH.ummm yeah!
I ran he gament on the pressure monitor from 5 all the way to 60/600. As Dr. W said there is no doubt that I have IIH. So what is the plan?
Well part of the plan involves the fact that I am sitting in Baltimore typing to you right know from a hotel room!!
Surgery is tomorrow at 1:30. I have to be there at 9:45. They will be placing a new VP shunt in. This time they will go in on the left side (the previous one was on the right)
I am really hoping that this works but at the same time I am going to be honest with myself in knowing that it may not. It could take care of all of the headaches, it could take care of only a few, it could take care of none.
But for now we will hope for the best.
I am sure the next update will be filled with lots of information.
Till then.....
I have not updated like I should have but to be fair my eyes have bee hurting so much and the instances of blurred vision and black out vision make it kind of hard to be on the computer let alone type.
The testing in Baltimore went like thy thought it would. DUH.ummm yeah!
I ran he gament on the pressure monitor from 5 all the way to 60/600. As Dr. W said there is no doubt that I have IIH. So what is the plan?
Well part of the plan involves the fact that I am sitting in Baltimore typing to you right know from a hotel room!!
Surgery is tomorrow at 1:30. I have to be there at 9:45. They will be placing a new VP shunt in. This time they will go in on the left side (the previous one was on the right)
I am really hoping that this works but at the same time I am going to be honest with myself in knowing that it may not. It could take care of all of the headaches, it could take care of only a few, it could take care of none.
But for now we will hope for the best.
I am sure the next update will be filled with lots of information.
Till then.....
Tuesday, August 25, 2009
Fasten your Seatbelts Kids
Fasten your Seatbelts Kids
How can it only have been four days since I took the time to blog. How can only four days have gone by when so much has happened? I just don’t slow down, not even for four days to happen.
We spent Wednesday night in our new “home away from home” Sinai Hospital. I got a little bored/antsy and took some pictures of the room. I know, how weird is that? My room is huge (compared to most hospital rooms) besides there just being a bed and side table for me there is a complete sitting area with couch and chair. In the stand up closet there are four folding chairs and even with these out, there would still be room for more. One really great thing, (and very convenient for the nurses I would think) is there is a nurse work station in each room. Each patient’s room has a station for the nurse equipped with a computer and basic supplies. Instead of having to trudge back to the nurse’s desk to check something, they can just check it right in your room.
To start with Thursday morning I had a CT scan. You will start to see a theme with me and CT’s so don’t worry it’s not a typo. Then the dreaded Spinal Tap/Lumbar Puncture. I will not go into to many details, because frankly I don’t want to relive that even in my head again. My opening pressure from the LP was 31. Whoooooooo…..Not Good….Really Not good. If you remember most “normal” peoples opening pressure is between 10 and 18. Not 31.
This is when I knew, this is when all the thoughts and concerns I had were confirmed.
I am sure some people thought I was insane or panicking for being back in Baltimore so soon. I am sure the thoughts crossed everyone’s mind when a little over a week ago I started complaining about my neck being sore, or just feeling crappy like I had the flu. At home I would randomly run a low grade fever of 99 or 100, discussions were had about that not being a “real fever”. I am sure everyone thought I just need to get a hold of my self, after all it had not been that long since I had the revision surgery. But with an opening pressure of 31 I knew that I was validated with my concerns. If there is one thing I have learned it is to trust your body. I know one heck of a lot more than anyone else about it.
So now that we have blood drawn and spinal fluid drawn it is a wait and see game. We wait and see if any infection or bacteria grow within the sample. This could take 3-4 days. By this point my neck has become my worst enemy..LOL…seriously. I never knew that my neck could possibly hurt as much as it did but WOW. It is to the point that I have very little range of motion and it just throbs. Friday morning brings another CT scan, okay strange. The Doctors now want to send me over to the Keager Eye Center for a full eye exam. This is connected right beside Sinai Hospital and I and my transportation friend hit the halls. Know let me remind you that I just had a lumbar puncture yesterday…that is a very important point right now. My transportation friend drops me off (I am in a wheelchair and stay sitting there) in the waiting room, signs me in, hands over my medical chart and I sit. I sit, and sit some more. Now let me just say that my Nurse had some into my room right before I left and told me the Eye Doctor wanted to se me know!! So I figured I would go in wait maybe 10-15 minutes and then be seen. As I sit in my wheel chair I have found a clock on the wall, you know just to glance at every now and then. But as I sit in the wheelchair I start to get hot, and that old familiar feeling of slight pain runs across my forehead. I also feel sharp pain in my back. Hmmmm, lets see I have just had a lumbar puncture less than a day ago and here I am trying to sit up in a chair…Guess what folks? It really does not work that way. I look at the clock 30 minutes have passed. I sit there and honestly try to tell myself I can do this, but my body is saying otherwise. I look at the clock and 45 minuets have passed, I can’t so this anymore. I am in a cold sweet, my head is pounding so bad that I am unable to keep one eye open anymore, my back is starting to arch and worst of all I am extremely nauseas. Thankfully this is when a nurse sees me and tells reception that I need to get back to my room. There is some flash of argument that I will be seen really soon, but thankfully the nurse will hear none of this. By the time I got back to my room, I was a mess. In complete tears already, seeing Mom, Dad and Wes sent me into hysterics. I can’t remember the last time I was in that degree of pain. I know all this is due to the lumbar puncture but still geesh… I will save you all the details of the rest of this day because #1- they are not pleasant and #2- the Charge Nurse ended up having to be called into this mess and really strong narcotics were needed to make this nightmare stop.
To say the least, the rest of the day…..I have not clue what happened. I woke up and it was Saturday.
Saturday came and I was off for another CT, this time with contrast. What is going on with all these CT’s, I am not sure, but intend to find out. We met with Dr. D and she let us know that the cultures from the blood and from the LP were not growing anything yet, which was somewhat surprising. To be on the safe side though she wanted to get a CSF fluid sample closer to the brain, and that would be in the shunt reservoir. She felt like she needed to get a clean sample. She cleaned to top of my head with bedodine and after draping she used a long needle and pulled the fluid out of the reservoir.
The rest of the day was pretty mindless and we all thought that nothing would happen (surgically) for three or four days. After all, it would take that long for the new fluid sample to show any infection Wes was scheduled for a three trip so he went home to get ready for that and Mom and Dad planed for Dad to fly home on Sunday night.
Sunday came and I was off to another CT. What gives, what’s up with all the head CT’s? Turns out they are using these to also watch for infection by changes in the brain….DUH.
So the day is mostly going by pretty boring? Mom had just gotten the confirmation on Dad’s flight home when my room door opens and Dr. D’s PA comes in. She bypass’s everyone and looks at me and says “When and what was the last time you ate”. Well, the last time at ate was at 9:30 and I had a blueberry muffin and coffee. I guess the obvious question of “Why” is on my face. The sample culture from my shunt reservoir has started to grow, it is an infection. This means that my shunt is infected and is way to close to my brain and this sucker has to come out fast. She tells me she has to check in with Dr. D. and let me know. I stand there with a look of shock on my face for about a minute and thinking wow this is happening really quick.
First things first. I have to call Wes and let him know. When I call him he is ten minutes away from the airport and fifteen minutes from checking in. I gave him a brief run down of what was going on and wham he was off the phone with me to make calls. About that time Dr. D’s PA came back in to let us know that surgery would be sometime after 2 o’clock on Monday. Nothing to eat or drink after midnight. What a long night that was.
Monday I tried to stay calm, key word try. So as I am sitting there cruising on the internet and out of the corner of my eye I see someone walk into my room. When I look up guess who I see? Trey, my big brother…can you believe he drove all the way from North Carolina just to see me! Know let me re-phrase that. I can believe he would do something like that because that is just the type of person/brother he is. But still, he was there. He was there to cheer me on. It almost made me cry. I had to get out of bed and give him a huge hug!!!!
So we wait, and wait and wait. 12 o’clock turns into 1 o’clock and 2 o’clock turns the corner into three. Now my nurse has told me that they will give me an hour or so “heads up” before they come get me. HA HA…yea right. Mom and I are talking about something and there is a knock on the door. Two ladies dresses in OR scrubs are there and say they are ready to take me to surgery!! So much for that hours heads up, LOL.
I will continue the rest of this and tell you about the surgery in the next blog.
How can it only have been four days since I took the time to blog. How can only four days have gone by when so much has happened? I just don’t slow down, not even for four days to happen.
We spent Wednesday night in our new “home away from home” Sinai Hospital. I got a little bored/antsy and took some pictures of the room. I know, how weird is that? My room is huge (compared to most hospital rooms) besides there just being a bed and side table for me there is a complete sitting area with couch and chair. In the stand up closet there are four folding chairs and even with these out, there would still be room for more. One really great thing, (and very convenient for the nurses I would think) is there is a nurse work station in each room. Each patient’s room has a station for the nurse equipped with a computer and basic supplies. Instead of having to trudge back to the nurse’s desk to check something, they can just check it right in your room.
To start with Thursday morning I had a CT scan. You will start to see a theme with me and CT’s so don’t worry it’s not a typo. Then the dreaded Spinal Tap/Lumbar Puncture. I will not go into to many details, because frankly I don’t want to relive that even in my head again. My opening pressure from the LP was 31. Whoooooooo…..Not Good….Really Not good. If you remember most “normal” peoples opening pressure is between 10 and 18. Not 31.
This is when I knew, this is when all the thoughts and concerns I had were confirmed.
I am sure some people thought I was insane or panicking for being back in Baltimore so soon. I am sure the thoughts crossed everyone’s mind when a little over a week ago I started complaining about my neck being sore, or just feeling crappy like I had the flu. At home I would randomly run a low grade fever of 99 or 100, discussions were had about that not being a “real fever”. I am sure everyone thought I just need to get a hold of my self, after all it had not been that long since I had the revision surgery. But with an opening pressure of 31 I knew that I was validated with my concerns. If there is one thing I have learned it is to trust your body. I know one heck of a lot more than anyone else about it.
So now that we have blood drawn and spinal fluid drawn it is a wait and see game. We wait and see if any infection or bacteria grow within the sample. This could take 3-4 days. By this point my neck has become my worst enemy..LOL…seriously. I never knew that my neck could possibly hurt as much as it did but WOW. It is to the point that I have very little range of motion and it just throbs. Friday morning brings another CT scan, okay strange. The Doctors now want to send me over to the Keager Eye Center for a full eye exam. This is connected right beside Sinai Hospital and I and my transportation friend hit the halls. Know let me remind you that I just had a lumbar puncture yesterday…that is a very important point right now. My transportation friend drops me off (I am in a wheelchair and stay sitting there) in the waiting room, signs me in, hands over my medical chart and I sit. I sit, and sit some more. Now let me just say that my Nurse had some into my room right before I left and told me the Eye Doctor wanted to se me know!! So I figured I would go in wait maybe 10-15 minutes and then be seen. As I sit in my wheel chair I have found a clock on the wall, you know just to glance at every now and then. But as I sit in the wheelchair I start to get hot, and that old familiar feeling of slight pain runs across my forehead. I also feel sharp pain in my back. Hmmmm, lets see I have just had a lumbar puncture less than a day ago and here I am trying to sit up in a chair…Guess what folks? It really does not work that way. I look at the clock 30 minutes have passed. I sit there and honestly try to tell myself I can do this, but my body is saying otherwise. I look at the clock and 45 minuets have passed, I can’t so this anymore. I am in a cold sweet, my head is pounding so bad that I am unable to keep one eye open anymore, my back is starting to arch and worst of all I am extremely nauseas. Thankfully this is when a nurse sees me and tells reception that I need to get back to my room. There is some flash of argument that I will be seen really soon, but thankfully the nurse will hear none of this. By the time I got back to my room, I was a mess. In complete tears already, seeing Mom, Dad and Wes sent me into hysterics. I can’t remember the last time I was in that degree of pain. I know all this is due to the lumbar puncture but still geesh… I will save you all the details of the rest of this day because #1- they are not pleasant and #2- the Charge Nurse ended up having to be called into this mess and really strong narcotics were needed to make this nightmare stop.
To say the least, the rest of the day…..I have not clue what happened. I woke up and it was Saturday.
Saturday came and I was off for another CT, this time with contrast. What is going on with all these CT’s, I am not sure, but intend to find out. We met with Dr. D and she let us know that the cultures from the blood and from the LP were not growing anything yet, which was somewhat surprising. To be on the safe side though she wanted to get a CSF fluid sample closer to the brain, and that would be in the shunt reservoir. She felt like she needed to get a clean sample. She cleaned to top of my head with bedodine and after draping she used a long needle and pulled the fluid out of the reservoir.
The rest of the day was pretty mindless and we all thought that nothing would happen (surgically) for three or four days. After all, it would take that long for the new fluid sample to show any infection Wes was scheduled for a three trip so he went home to get ready for that and Mom and Dad planed for Dad to fly home on Sunday night.
Sunday came and I was off to another CT. What gives, what’s up with all the head CT’s? Turns out they are using these to also watch for infection by changes in the brain….DUH.
So the day is mostly going by pretty boring? Mom had just gotten the confirmation on Dad’s flight home when my room door opens and Dr. D’s PA comes in. She bypass’s everyone and looks at me and says “When and what was the last time you ate”. Well, the last time at ate was at 9:30 and I had a blueberry muffin and coffee. I guess the obvious question of “Why” is on my face. The sample culture from my shunt reservoir has started to grow, it is an infection. This means that my shunt is infected and is way to close to my brain and this sucker has to come out fast. She tells me she has to check in with Dr. D. and let me know. I stand there with a look of shock on my face for about a minute and thinking wow this is happening really quick.
First things first. I have to call Wes and let him know. When I call him he is ten minutes away from the airport and fifteen minutes from checking in. I gave him a brief run down of what was going on and wham he was off the phone with me to make calls. About that time Dr. D’s PA came back in to let us know that surgery would be sometime after 2 o’clock on Monday. Nothing to eat or drink after midnight. What a long night that was.
Monday I tried to stay calm, key word try. So as I am sitting there cruising on the internet and out of the corner of my eye I see someone walk into my room. When I look up guess who I see? Trey, my big brother…can you believe he drove all the way from North Carolina just to see me! Know let me re-phrase that. I can believe he would do something like that because that is just the type of person/brother he is. But still, he was there. He was there to cheer me on. It almost made me cry. I had to get out of bed and give him a huge hug!!!!
So we wait, and wait and wait. 12 o’clock turns into 1 o’clock and 2 o’clock turns the corner into three. Now my nurse has told me that they will give me an hour or so “heads up” before they come get me. HA HA…yea right. Mom and I are talking about something and there is a knock on the door. Two ladies dresses in OR scrubs are there and say they are ready to take me to surgery!! So much for that hours heads up, LOL.
I will continue the rest of this and tell you about the surgery in the next blog.
Wednesday, August 19, 2009
Not feeling well, Headed back to Baltimore
Not feeling well, Headed back to Baltimore.
The last couple of days have not been good ones.
My headaches at times have seemed to ramp up but something else is going on.
I noticed very suddenly a sharp pain in my neck (the side where the shunt is) and then excruciating pain set in and has not let up.
My neck has become very stiff, tender, and sore. It is swollen in places and feels liked knots have developed within the shunt tubing. To turn my head to the right is impossible. I am not able to raise my arms without tears coming to my eyes. The reservoir in my head where the shunt is feels “different” I cannot explain it very well but it does not seem as large and protruding.
I am also running a low grade fever. This is not a good thing. Being that I just had brain surgery less than a month ago this is very concerning even if it is low grade.
I have redness that almost looks like a rash down my neck, over the collarbone and down my chest. This is not good at all. This is a sign of an infection.
I have been told on numerous occasions that any fever and redness along the shunt track is sign of infection and needs to be taken care of ASAP.
After being in contact with my Neurosurgeon, she prescribed a heavy duty muscle relaxer, which did nothing, and ordered some test. The first series of test were X-rays of the abdomen, cervical and skull. In these series of test they were looking to see if any of the “hardware” had dislodged or moved. It has not. The second set of test was a CT scan. I do not know the results of these yet.
After much phone tag and debate, Dr. D feels it is best if I come in to her office to let her examine me, because lets face it you can’t examine someone over the phone. What concerns her is the fever, swelling and redness as these are all classic signs of a shunt infection. In my conversation with her she did mention possible hospitalization for I.V. therapy but we will cross that bridge when we get there.
I thought the headaches were bad, but couple those with this neck pain and WOW! It has begun to hurt when I walk and go up and down a step as that seems to jostle everything. Now, trying to lay down in a bed….well lets just say that thank God Wes is here.
So that is the latest. Wes and I will leave tomorrow at 6:00 a.m. We have found that this time avoids the traffic congestion in Richmond, Fredericksburg, and D.C. I am not looking forward to the car ride because every bump is going to be so painful.
Just when I think I have reached my threshold of pain, it gets upped again.
I am hoping and praying that the shunt is not infected and that a hospitalization or surgery is not going to be required.
Hope is sometimes all we have left, but it is something very grand to hold onto.
The last couple of days have not been good ones.
My headaches at times have seemed to ramp up but something else is going on.
I noticed very suddenly a sharp pain in my neck (the side where the shunt is) and then excruciating pain set in and has not let up.
My neck has become very stiff, tender, and sore. It is swollen in places and feels liked knots have developed within the shunt tubing. To turn my head to the right is impossible. I am not able to raise my arms without tears coming to my eyes. The reservoir in my head where the shunt is feels “different” I cannot explain it very well but it does not seem as large and protruding.
I am also running a low grade fever. This is not a good thing. Being that I just had brain surgery less than a month ago this is very concerning even if it is low grade.
I have redness that almost looks like a rash down my neck, over the collarbone and down my chest. This is not good at all. This is a sign of an infection.
I have been told on numerous occasions that any fever and redness along the shunt track is sign of infection and needs to be taken care of ASAP.
After being in contact with my Neurosurgeon, she prescribed a heavy duty muscle relaxer, which did nothing, and ordered some test. The first series of test were X-rays of the abdomen, cervical and skull. In these series of test they were looking to see if any of the “hardware” had dislodged or moved. It has not. The second set of test was a CT scan. I do not know the results of these yet.
After much phone tag and debate, Dr. D feels it is best if I come in to her office to let her examine me, because lets face it you can’t examine someone over the phone. What concerns her is the fever, swelling and redness as these are all classic signs of a shunt infection. In my conversation with her she did mention possible hospitalization for I.V. therapy but we will cross that bridge when we get there.
I thought the headaches were bad, but couple those with this neck pain and WOW! It has begun to hurt when I walk and go up and down a step as that seems to jostle everything. Now, trying to lay down in a bed….well lets just say that thank God Wes is here.
So that is the latest. Wes and I will leave tomorrow at 6:00 a.m. We have found that this time avoids the traffic congestion in Richmond, Fredericksburg, and D.C. I am not looking forward to the car ride because every bump is going to be so painful.
Just when I think I have reached my threshold of pain, it gets upped again.
I am hoping and praying that the shunt is not infected and that a hospitalization or surgery is not going to be required.
Hope is sometimes all we have left, but it is something very grand to hold onto.
Tuesday, August 4, 2009
Falls into place. Falls into peices
Home sweet Embassy Suites Home!!!
Considering it has been some form of residence for my parents, Wes, or me for almost a week now.
I was spent Friday and Saturday night in the hospital and was discharged late afternoon on Sunday. Before being discharged Dr. Williams (my Neurologist)came by with the second set of CT scans. (if you remember the previous CT scan showed blood in the ventricles of the brain...not a good thing) The second set/series taken Sunday morning showed that the blood was dissipating and not getting any larger. So that is a good thing!!! On a sour note he did say there is a possibility that the blood may have clotted up/blocked the new shunt OMG!!!! NO WAY!!!! In the same breathe he also said that is appears that the bleed may be a little above the shunt. Aghh....only me people, only me...
So to be honest this has had me in a not so lovely mood.
As far as how I am feeling? Well do you want a sugar cookie answer or the truth?
Ha Ha...you know I am going to give you the truth.
I feel horrible. But hey, what do you expect? I just had brain surgery.
My symptoms and pain are still here....they left for a little while but then they came back....why?
I awoke from surgery on Friday and did not have a headache. I spent all day Saturday without a headache. Now, don't get me wrong my head hurt but it was a sore, hit your head on something kind of hurt. It was wonderful not to have the gorilla jumping, jackhammer headache that has been a constant with me since January.
Well that all went to shit pretty quick.
It started out slow but them came raging back quick as lightning. My old familiar friend headache. Yep, he showed back up on Sunday and has not left.
This really worries me. One sign/symptom of a shunt malfunction or blockage is a return of old symptoms. That combined with the blood in the ventricles does not help any.
Instead of wallowing in despair I took Wes's advice and called Dr. Dorai (my Neurosurgeon) to ask her about this and a few other questions.
#1- What was her opinion of the blood found in the ventricle?
She said that this was not something they expected to happen during surgery (only me right) when they took out the old shunt from the ventricle this caused trauma and that is why there was a bleed. She was however pleased with the results of the second CT scan that showed the bleed was not getting larger. To continue to monitor this, I am to have another CT scan done at home before my follow up visit with her on the 12th.
#2- I am having horrible pain still in my upper abdomen, like before just on the other side.
She really did not have a good answer for this one and to be honest its the only thing she has never really had a straight forward solution/answer for. She feels that it is the tube loose in the abdomen trying to find a place to "rest". Hmmm not what I wanted to hear but I will take the "lets give it time" answer for now.
#3 and most important- The headaches were gone for 2 1/2 days, now they are back.
This is why I love Dr. Dorai. She did not mince words, did not sugar coat it, did not brush it off. Basically, the blood in the ventricles may have caused the shunt to become blocked, I may need another revision aka...surgery. Before jumping into surgical options she wants to see what the ventricles look like on the CT scan. I would also need to have another shunt patency test (this is the test I had where they inject dye into the shunt and watch to see if there is any flow) Mostly she is hoping the headache goes away.
But she is realistic. She is not going to leave me high and dry. She has a plan.
So...... The conversation with Dr. Dorai was not exactly what I wanted to hear, but in my mind I knew that was what she was going to say. Once these horrible headaches came back after being gone for over two days, I knew something was not right.
Since Sunday night Wes and I have been staying at the hotel. Poor guy, I know he is going bananas! Thank goodness we have a two room suite so that I can sleep in one room and he can have the TV roaring in the other. Like always he has been wonderful through all of this. I am sure at times I drive him crazy but when I get upset about this whole situation he is right there to hold my hand or give me a big hug and that lets me know it will be ok.
Today we called my Neurologist Dr. Williams to see what his thoughts on things were and if he wanted to see me before we left Baltimore. He wants to see me next week when I come back for my post-op appointment with Dr.Dorai. He is very concerned about the returning headaches and most likely will try to schedule some testing for next Wednesday also. He will be in contact with Dr. Dorai in the next few days so they can get a "game plan" together. I should hear from him by the end of this week with more information.
I have an amazing team of Doctors, no doubt, all of that has finally fallen into place.
The problem now, is that I keep falling into pieces.
Considering it has been some form of residence for my parents, Wes, or me for almost a week now.
I was spent Friday and Saturday night in the hospital and was discharged late afternoon on Sunday. Before being discharged Dr. Williams (my Neurologist)came by with the second set of CT scans. (if you remember the previous CT scan showed blood in the ventricles of the brain...not a good thing) The second set/series taken Sunday morning showed that the blood was dissipating and not getting any larger. So that is a good thing!!! On a sour note he did say there is a possibility that the blood may have clotted up/blocked the new shunt OMG!!!! NO WAY!!!! In the same breathe he also said that is appears that the bleed may be a little above the shunt. Aghh....only me people, only me...
So to be honest this has had me in a not so lovely mood.
As far as how I am feeling? Well do you want a sugar cookie answer or the truth?
Ha Ha...you know I am going to give you the truth.
I feel horrible. But hey, what do you expect? I just had brain surgery.
My symptoms and pain are still here....they left for a little while but then they came back....why?
I awoke from surgery on Friday and did not have a headache. I spent all day Saturday without a headache. Now, don't get me wrong my head hurt but it was a sore, hit your head on something kind of hurt. It was wonderful not to have the gorilla jumping, jackhammer headache that has been a constant with me since January.
Well that all went to shit pretty quick.
It started out slow but them came raging back quick as lightning. My old familiar friend headache. Yep, he showed back up on Sunday and has not left.
This really worries me. One sign/symptom of a shunt malfunction or blockage is a return of old symptoms. That combined with the blood in the ventricles does not help any.
Instead of wallowing in despair I took Wes's advice and called Dr. Dorai (my Neurosurgeon) to ask her about this and a few other questions.
#1- What was her opinion of the blood found in the ventricle?
She said that this was not something they expected to happen during surgery (only me right) when they took out the old shunt from the ventricle this caused trauma and that is why there was a bleed. She was however pleased with the results of the second CT scan that showed the bleed was not getting larger. To continue to monitor this, I am to have another CT scan done at home before my follow up visit with her on the 12th.
#2- I am having horrible pain still in my upper abdomen, like before just on the other side.
She really did not have a good answer for this one and to be honest its the only thing she has never really had a straight forward solution/answer for. She feels that it is the tube loose in the abdomen trying to find a place to "rest". Hmmm not what I wanted to hear but I will take the "lets give it time" answer for now.
#3 and most important- The headaches were gone for 2 1/2 days, now they are back.
This is why I love Dr. Dorai. She did not mince words, did not sugar coat it, did not brush it off. Basically, the blood in the ventricles may have caused the shunt to become blocked, I may need another revision aka...surgery. Before jumping into surgical options she wants to see what the ventricles look like on the CT scan. I would also need to have another shunt patency test (this is the test I had where they inject dye into the shunt and watch to see if there is any flow) Mostly she is hoping the headache goes away.
But she is realistic. She is not going to leave me high and dry. She has a plan.
So...... The conversation with Dr. Dorai was not exactly what I wanted to hear, but in my mind I knew that was what she was going to say. Once these horrible headaches came back after being gone for over two days, I knew something was not right.
Since Sunday night Wes and I have been staying at the hotel. Poor guy, I know he is going bananas! Thank goodness we have a two room suite so that I can sleep in one room and he can have the TV roaring in the other. Like always he has been wonderful through all of this. I am sure at times I drive him crazy but when I get upset about this whole situation he is right there to hold my hand or give me a big hug and that lets me know it will be ok.
Today we called my Neurologist Dr. Williams to see what his thoughts on things were and if he wanted to see me before we left Baltimore. He wants to see me next week when I come back for my post-op appointment with Dr.Dorai. He is very concerned about the returning headaches and most likely will try to schedule some testing for next Wednesday also. He will be in contact with Dr. Dorai in the next few days so they can get a "game plan" together. I should hear from him by the end of this week with more information.
I have an amazing team of Doctors, no doubt, all of that has finally fallen into place.
The problem now, is that I keep falling into pieces.
Saturday, August 1, 2009
All New Parts for Me!!!
All New Parts for me!!!
Surgery went well yesterday. Thank God.
The only snafu I ran into was my wedding ring and engagement ring. I started Thursday night trying to get those suckers off. I tried soap, lotion, ice water, Vaseline….you name it. By the time I got to registration and the pre-op holding area my knuckle was four times its normal size. EEKKK!
But have not fear as Mom was near. She new of this trick with dental floss or string to get them off. Problem was, no one could seem to find those items. We and the are discussing this as an Orthopedic Doctor happens to hear this conversation and says “Oh yeah, I can do that with my mask string”
LOL..I swear there was an audience of at least nine nurses and four Doctors watching here get those blasted rings off my finger. The way she did this was taking the mask string and threading it under the ring, wrapping one end and then wrapping the other end over and over the skin. All the while doing this you pull and twist on both ends of the string. This action forces the swollen skin down while also raking the ring across your finger and finally off. Now, it hurt like hell, but I did not want them to have to cut my beautiful rings off.
After all that excitement it was time for surgery. Off I went.
The next thing I know…I am in recovery. Naturally the first thing I did was reach for the top of my head (uhmmm we will discuss the horrid hair later) Then I see Wes. Yeah!!!
He tells me what they did..in a nutshell here we go.
The general surgeon was able to do the distal/abdominal part of the surgery laproscoptically. He did find a mess of scar tissue and adhesions but more importantly he found that the tube was blocked, major blocked. So all the tubing was replaced by new and they were able to find somewhere to place the tube without having to go into the chest cavity.
Dr. Dorai’s part of the surgery was the actual shunt in my head/brain. What she found was that I had a major blockage. There was very little if anything coming out of that shunt. So she replaced the whole shunt system. From the catheter, valves shunt that goes into the ventricle to the tubing that runs from the brain, down my neck and under my collar bone.
Basically it was out with the old (well it was not really old, it was just placed in March) and in with the new.
I don’t remember a lot about being in recovery and that’s probably a good thing.
The only concerning thing going on right now is that the CT scan that I had at 2:30 am, yes you read that right 2:30 am, showed some bleeding in the ventricle where the shunt is placed. Dr. Dorai’s PA is the one who informed us about this. The other Neurosurgeon, that is on call this weekend) will be coming by to check on me and discuss this later today. I asked the PA what they would do about the bleeding, and all she would really say is that she had to talk the other Doctor but normally if the bleed is not to large they will just let it heal on there own.
Pain, Discomfort, Sore, Ache, Bruised, Relived, Anxious….those are just some of the words I would use to describe how I feel right about now. Basically I feel like a Tractor ran over my neck and head. So for now I am going to let them pump me with IV pain relief and close my eyes.
Surgery went well yesterday. Thank God.
The only snafu I ran into was my wedding ring and engagement ring. I started Thursday night trying to get those suckers off. I tried soap, lotion, ice water, Vaseline….you name it. By the time I got to registration and the pre-op holding area my knuckle was four times its normal size. EEKKK!
But have not fear as Mom was near. She new of this trick with dental floss or string to get them off. Problem was, no one could seem to find those items. We and the are discussing this as an Orthopedic Doctor happens to hear this conversation and says “Oh yeah, I can do that with my mask string”
LOL..I swear there was an audience of at least nine nurses and four Doctors watching here get those blasted rings off my finger. The way she did this was taking the mask string and threading it under the ring, wrapping one end and then wrapping the other end over and over the skin. All the while doing this you pull and twist on both ends of the string. This action forces the swollen skin down while also raking the ring across your finger and finally off. Now, it hurt like hell, but I did not want them to have to cut my beautiful rings off.
After all that excitement it was time for surgery. Off I went.
The next thing I know…I am in recovery. Naturally the first thing I did was reach for the top of my head (uhmmm we will discuss the horrid hair later) Then I see Wes. Yeah!!!
He tells me what they did..in a nutshell here we go.
The general surgeon was able to do the distal/abdominal part of the surgery laproscoptically. He did find a mess of scar tissue and adhesions but more importantly he found that the tube was blocked, major blocked. So all the tubing was replaced by new and they were able to find somewhere to place the tube without having to go into the chest cavity.
Dr. Dorai’s part of the surgery was the actual shunt in my head/brain. What she found was that I had a major blockage. There was very little if anything coming out of that shunt. So she replaced the whole shunt system. From the catheter, valves shunt that goes into the ventricle to the tubing that runs from the brain, down my neck and under my collar bone.
Basically it was out with the old (well it was not really old, it was just placed in March) and in with the new.
I don’t remember a lot about being in recovery and that’s probably a good thing.
The only concerning thing going on right now is that the CT scan that I had at 2:30 am, yes you read that right 2:30 am, showed some bleeding in the ventricle where the shunt is placed. Dr. Dorai’s PA is the one who informed us about this. The other Neurosurgeon, that is on call this weekend) will be coming by to check on me and discuss this later today. I asked the PA what they would do about the bleeding, and all she would really say is that she had to talk the other Doctor but normally if the bleed is not to large they will just let it heal on there own.
Pain, Discomfort, Sore, Ache, Bruised, Relived, Anxious….those are just some of the words I would use to describe how I feel right about now. Basically I feel like a Tractor ran over my neck and head. So for now I am going to let them pump me with IV pain relief and close my eyes.
Thursday, July 30, 2009
In Baltimore- Pre-Op }}}}}}
I had my Pre-Op Appointmnet yesterday and everything went well.
As Trey pointed out its a good thing I liked her considering that I am having surgery with her on Friday and all.
Dr. Zeena Dorai will be doing the Surgery at Sinai Hospital on Friday. I have to be there at 7:00 am.
I am so ready to get this over with. She made me feel very at ease and comfortable. She went over my last CT scan and pointed our how small my ventricles are. This is very common in patients with Intracranial Hypertension. She did say that she liked the placement of my current shunt.
So what is the plan???
There will be a General Surgeon working with her during my surgery. His part will be to work on the abdominal (tubing) end of things. His goal is to readjust the tubing inside the abdominal so that it sits somewhere with less scare tissue and adhesion's. He also will be checking to see if the tube is blocked and if it needs to be replaced.
I have had so much pain in my sides that this could be a welcomed change. If he is not able to place the tubing back into the abdomen he may have to place it into the chest cavity although this is not the desired placement. They are hoping he will be able to do all this laproscopticlly but will have to play it by ear.
While he is doing this Dr. Dorai will begin her part of he surgery which is the brain and where the actual shunt is. She will shave the head again and expose the shunt. She will individually take out each component and test it to determine if it is working. Once she finds the piece/pieces that are not working she will replace them. This will include the catheter, valve and tubing. Once she has done all this she will test the flow and pressure to make sure that everything is working before closing it back up.
For now Dr. Dorai's feeling is that I need a new shunt. But as she has said she just does not know and cannot say for sure until she gets in there. After surgery I will be taken to recovery and then to my room on the Neurology floor. The plan is for me to stay to nights in the hospital and then go from there.
Wheww.....that's a lot of information.
I feel really good about this. I know I am in the best hands for this operation and I am just ready to get it over with.
Mom and Dad are headed up here today and I am so glad they are coming. Wes and I are still trying to decide what we are going to do today to keep our minds off of tomorrow. We can't deceide if we should go see the O's play or go check out the Beltimore Aquarium. LOL...it's not so much that we can't decide, it's just a differing of opnion...
I will try to update asap after surgery.
Thank you everyone for all your thoughts and prayers.
As Trey pointed out its a good thing I liked her considering that I am having surgery with her on Friday and all.
Dr. Zeena Dorai will be doing the Surgery at Sinai Hospital on Friday. I have to be there at 7:00 am.
I am so ready to get this over with. She made me feel very at ease and comfortable. She went over my last CT scan and pointed our how small my ventricles are. This is very common in patients with Intracranial Hypertension. She did say that she liked the placement of my current shunt.
So what is the plan???
There will be a General Surgeon working with her during my surgery. His part will be to work on the abdominal (tubing) end of things. His goal is to readjust the tubing inside the abdominal so that it sits somewhere with less scare tissue and adhesion's. He also will be checking to see if the tube is blocked and if it needs to be replaced.
I have had so much pain in my sides that this could be a welcomed change. If he is not able to place the tubing back into the abdomen he may have to place it into the chest cavity although this is not the desired placement. They are hoping he will be able to do all this laproscopticlly but will have to play it by ear.
While he is doing this Dr. Dorai will begin her part of he surgery which is the brain and where the actual shunt is. She will shave the head again and expose the shunt. She will individually take out each component and test it to determine if it is working. Once she finds the piece/pieces that are not working she will replace them. This will include the catheter, valve and tubing. Once she has done all this she will test the flow and pressure to make sure that everything is working before closing it back up.
For now Dr. Dorai's feeling is that I need a new shunt. But as she has said she just does not know and cannot say for sure until she gets in there. After surgery I will be taken to recovery and then to my room on the Neurology floor. The plan is for me to stay to nights in the hospital and then go from there.
Wheww.....that's a lot of information.
I feel really good about this. I know I am in the best hands for this operation and I am just ready to get it over with.
Mom and Dad are headed up here today and I am so glad they are coming. Wes and I are still trying to decide what we are going to do today to keep our minds off of tomorrow. We can't deceide if we should go see the O's play or go check out the Beltimore Aquarium. LOL...it's not so much that we can't decide, it's just a differing of opnion...
I will try to update asap after surgery.
Thank you everyone for all your thoughts and prayers.
Wednesday, July 22, 2009
10 Surprising Reasons your Stressed
10 Surprising Reasons your Stressed
What only ten?
Come on I know I can name way more than that. Well anyway that was a recent title to an article in a magazine I was reading. I could not help laugh out loud at some of the top ten. Take for instance “you never have quiet time” well who does?
But anyway.
Stress. Whats the definition of that anyway?
“Stress is a biological term which refers to the consequences of the failure of a human or animal to respond appropriately to emotional or physical threats to the organism, whether actual or imagined”
Hmmm, or in my terms- Your about to pop your every loving lid and officially loose it. Because you have so many things, people and whatever thrown your way that you don’t know whether to laugh, cry or go hide.
But that’s just my definition.
Stress is just a part of daily existence when you really think about it. There is no “easy” button and if there where how boring would that be?
Well to tell you the truth I think I am Marjory do for some boring right about now.
So I have not blogged in a while, so lets get caught up, shall we?
We shall!!
Boy o Boy…do I have a lot to share…
What else would you expect from me?
I like to say that “ I am incapable of doing anything small, If you can’t go big, go home”
This is extremely sarcastic as you will see.
Yes my Shunt that I have only had since March is obstructed. This means more surgery. More Brain surgery. I am real thrilled about that.
I will be going to Baltimore to Sinai Hospital to have Surgery. I will have my consultation on Wednesday July 29 with the Neurosurgeon and then have the actual surgery on Friday the 31st. They will first start by looking in the abdomen at the tubing there, and then move on to the head/brain where the valve and shunt are.
I will be spending two days in the hospital and then at least two more days in the Baltimore area before they will release me to head back home. From there I will recover at home before heading back to Baltimore for a post-op appointment. I should expect a 4 to 8 week recovery time, just as before.
Whew did you catch all that.
Wes is going to be able to be with me the whole time (thank you very much FMLA) and Mom and Dad will be coming up to Baltimore on Thursday and leaving on Sunday.
To say that I am not nervous, scared, worried would be a lie. But I can say I am comfortable. What, you say does that mean?
I am comfortable because I have to be. For my own sanity and those around me.
I have no choice but to be comfortable.
But is that all that is/has gone on? Oh heck no.
Now I feel at this point I can let you in on something because
#1 it’s all cleared up now
#2 It was not as bad as first though
#3 No one was ever in danger of contacting it from me as I made 1000% sure of that.
I noticed about a little over a month ago I have a few pimple raised like bumps on my inner arm. Right about the area where an I.V. had been. (Hmmm, I bet some of you can see where this is going) At first I did not think much about it but it just did not go away. Then, to my dismay it started to ooze a little (sorry if you gagged a little there) So I went to the Doctor, fearing the worst.
They looked at it and immediately said it’s probably a Staph infection and at worst it’s MRSA. Lovely, just lovely I think. So they took a wound culture and sent it off. Because it would take three days to get the results they went ahead and started treating it as if it was MRSA.
Lucky or Unlucky for me, depending on how you look at it….it was not MRSA but was a Staph infection.
I actually should not be surprised that I had one, being as how many times since January I have been in the hospital.
Let me just say that during this past month I have never washed my hands and arms as many times as I did then. I have also never gone through as many band aids as I did then. But yes, my fellow public was kept safe so that is what counts.
That must be all right? Wrong……Don’t you people know me better than that yet?
I loathe going to the Dentist. I would rather give birth seven times without an epidural than go to the Dentist. Because of that I avoid the Dentist like some people avoid a bill collector’s telephone call.
For the last several months I have noticed a slight..and I do mean just a teeny tiny slight pain in the left side of my mouth. Nothing to bad, and does not last to long. So why worry about it right?....wrong…..
It came to a head, screaming and raging its big ugly head Monday night. And I think it laughed as it watched me walk into the Dentist office.
The source of pain is a tooth that I had a root canal done on in 1998. After the Dentist does his examination and mops of the floor because of my panic and sweat , just kidding, he determines that the tooth has now cracked and cannot be saved. It will need to be extracted.
Say What!!!!!
For the love of Pete, can’t a girl get a break? Of course not when the girl we are talking about is me.
Extraction. what a really ugly, fowl word.
Basically they take fancy pliers and the jaws of life and twist the no good tooth right out of your gums.
Fun times kids, Fun times!!!!
That was today’s adventure….me versus the jaws of dental life.
The Jaws Won…
I was told I should probably expect some bruising on my face since when they tried to pull the tooth out it cracked in half and then they had to REALLY dig that sucker out.
Sigh…..
So here I sit with Vicodin , Ice Pack and a swollen jaw.
Oh yeah, and one heck of a headache. But that’s just everyday life for me know.
So after I have my Surgery in Baltimore (several weeks after actually) I will have to go back to the dentist to have an implant for that stupid tooth.
So here we are. All caught up. For now at least.
10 Surprising Reasons your Stressed…Give me a break….I know all 100 reasons why I am stressed
What only ten?
Come on I know I can name way more than that. Well anyway that was a recent title to an article in a magazine I was reading. I could not help laugh out loud at some of the top ten. Take for instance “you never have quiet time” well who does?
But anyway.
Stress. Whats the definition of that anyway?
“Stress is a biological term which refers to the consequences of the failure of a human or animal to respond appropriately to emotional or physical threats to the organism, whether actual or imagined”
Hmmm, or in my terms- Your about to pop your every loving lid and officially loose it. Because you have so many things, people and whatever thrown your way that you don’t know whether to laugh, cry or go hide.
But that’s just my definition.
Stress is just a part of daily existence when you really think about it. There is no “easy” button and if there where how boring would that be?
Well to tell you the truth I think I am Marjory do for some boring right about now.
So I have not blogged in a while, so lets get caught up, shall we?
We shall!!
Boy o Boy…do I have a lot to share…
What else would you expect from me?
I like to say that “ I am incapable of doing anything small, If you can’t go big, go home”
This is extremely sarcastic as you will see.
Yes my Shunt that I have only had since March is obstructed. This means more surgery. More Brain surgery. I am real thrilled about that.
I will be going to Baltimore to Sinai Hospital to have Surgery. I will have my consultation on Wednesday July 29 with the Neurosurgeon and then have the actual surgery on Friday the 31st. They will first start by looking in the abdomen at the tubing there, and then move on to the head/brain where the valve and shunt are.
I will be spending two days in the hospital and then at least two more days in the Baltimore area before they will release me to head back home. From there I will recover at home before heading back to Baltimore for a post-op appointment. I should expect a 4 to 8 week recovery time, just as before.
Whew did you catch all that.
Wes is going to be able to be with me the whole time (thank you very much FMLA) and Mom and Dad will be coming up to Baltimore on Thursday and leaving on Sunday.
To say that I am not nervous, scared, worried would be a lie. But I can say I am comfortable. What, you say does that mean?
I am comfortable because I have to be. For my own sanity and those around me.
I have no choice but to be comfortable.
But is that all that is/has gone on? Oh heck no.
Now I feel at this point I can let you in on something because
#1 it’s all cleared up now
#2 It was not as bad as first though
#3 No one was ever in danger of contacting it from me as I made 1000% sure of that.
I noticed about a little over a month ago I have a few pimple raised like bumps on my inner arm. Right about the area where an I.V. had been. (Hmmm, I bet some of you can see where this is going) At first I did not think much about it but it just did not go away. Then, to my dismay it started to ooze a little (sorry if you gagged a little there) So I went to the Doctor, fearing the worst.
They looked at it and immediately said it’s probably a Staph infection and at worst it’s MRSA. Lovely, just lovely I think. So they took a wound culture and sent it off. Because it would take three days to get the results they went ahead and started treating it as if it was MRSA.
Lucky or Unlucky for me, depending on how you look at it….it was not MRSA but was a Staph infection.
I actually should not be surprised that I had one, being as how many times since January I have been in the hospital.
Let me just say that during this past month I have never washed my hands and arms as many times as I did then. I have also never gone through as many band aids as I did then. But yes, my fellow public was kept safe so that is what counts.
That must be all right? Wrong……Don’t you people know me better than that yet?
I loathe going to the Dentist. I would rather give birth seven times without an epidural than go to the Dentist. Because of that I avoid the Dentist like some people avoid a bill collector’s telephone call.
For the last several months I have noticed a slight..and I do mean just a teeny tiny slight pain in the left side of my mouth. Nothing to bad, and does not last to long. So why worry about it right?....wrong…..
It came to a head, screaming and raging its big ugly head Monday night. And I think it laughed as it watched me walk into the Dentist office.
The source of pain is a tooth that I had a root canal done on in 1998. After the Dentist does his examination and mops of the floor because of my panic and sweat , just kidding, he determines that the tooth has now cracked and cannot be saved. It will need to be extracted.
Say What!!!!!
For the love of Pete, can’t a girl get a break? Of course not when the girl we are talking about is me.
Extraction. what a really ugly, fowl word.
Basically they take fancy pliers and the jaws of life and twist the no good tooth right out of your gums.
Fun times kids, Fun times!!!!
That was today’s adventure….me versus the jaws of dental life.
The Jaws Won…
I was told I should probably expect some bruising on my face since when they tried to pull the tooth out it cracked in half and then they had to REALLY dig that sucker out.
Sigh…..
So here I sit with Vicodin , Ice Pack and a swollen jaw.
Oh yeah, and one heck of a headache. But that’s just everyday life for me know.
So after I have my Surgery in Baltimore (several weeks after actually) I will have to go back to the dentist to have an implant for that stupid tooth.
So here we are. All caught up. For now at least.
10 Surprising Reasons your Stressed…Give me a break….I know all 100 reasons why I am stressed
Wednesday, June 10, 2009
The Buffet Line of Life
The Buffet Line of Life….
Ummm yea….too many choices
Which one to choose… the fish, chicken, meat, liver…?
Life is like a buffet line..no really it is….let me tell you why.
When you go to a buffet there are a zillion choices of food items. They all look wonderful. Right?
From the salad bar to the dessert bar your tongue starts watering…come on you know it does. You know you just want to grab a huge spoon and start dipping into everything right there with wild abandon..opps that’s my gluttoness dream and not yours…
Well how the sam hill is life like a buffet? Well its all about options and choices and having to choose. It’s nice to say you want everything on the buffet (life) but in actuality we have to choose bits and pieces off the buffet (life) and pray to God that we make the right choices and don’t get heartburn in the process….
Sigh…sometimes…I think I look too deep into things. This may be one of them.
So this is going to be a long blog entry so grab your vodka, beer or coffee…whatever your drink of choice is and settle in and don’t say I did not warn you…OK? OK
So my Neurosurgeon visit….OMG what Drama….
Let me say that I do love my Neurosurgeon…he is wonderful and very honest. He comes in and basically says that he does not really know what to do with me. He has only treated 4 patients with my disease and I am the 4th. He also says that he is so sorry for all the pain I am in. (Yea, me too) He says that the only thing he can do is to place an lumbar peritonerial shunt (LP) . At the same time he cannot guarantee that this will do any good. He cannot say that this will rid me of the daily pain I am in. OK then…
Pause for dramatic effect…
So……What does he say…. He says that if I want he will do the surgery.
Yes, you read that right it was not a typo. He will do the surgery if I want.
Wooooo….Hold on here..You have got to be kidding me. My Neurosurgeon is telling me that if I want he will do surgery. Hmmmm. No pressure.
So, we leave and discussion begins.
Lets face it people, I am a Purchasing Manger. I deal with China and Germany not Medical lingo..what the hell do I know….
I will save you all the details and cut to the chase.
I have decided to have the surgery. After much debate and consideration the benefit outweighs the risks. Also, if I don’t have the surgery I will always wonder if that would have been the “fix” for me.
As of now surgery is scheduled for Wednesday at Wake Med. I will be having this shunt placed in my back and will spend at least one night in the hospital.
HOLD UP>>> WAIT A MINUTE>>>>>>
That’s way to easy….Right?……Right.
Life is a Buffet…and it’s all about choices….
Texas Toast or Muffin…you choose.
Life is never easy and why in the Sam hill did you think this would be a smooth operation? No pun intended.
What you don’t see is the back story (per say) that is going on in my life…..
I have a great friend, Michelle that I have never met in person. LOL. We met on a chat board for Intracranial Hypertension and then became friends on Face book.
She posted a link for an upcoming talk show on Intracranial Hypertension on www.blogtalkradio.com with Dr. Tanne. who is the founder of the Intracranial Hypertension foundation. I, in turn also posted the link. My wonderful mother listened to his show and decided what the hay, I will call him.
Guess what? She spent about an hour on the phone with him.
He recommended a Doctor in Baltimore that specializes in Intracranial Hypertension. Dr. Michael Williams. He is with Sinai Hospital in Baltimore. She called, talked to his nurse; she said send your record and we will see if he accepts you.
So, I, the ever pessimistic person hold no faith in this. After the Cleveland Clinic disaster and being turned down by the Mayo Clinic who could blame me.
But as I am preparing for surgery, I get word that Dr. Williams wants to talk to me via phone on Monday. Mind you that on this day at twelve o’clock I had my pre op phone call with Wake Med. I was all set to go with surgery.
Long…long story short and 45 minutes later talking with Dr. Williams he wants to accept me into his practice. But he will not come right out and say that I do not need to have the surgery that is planned. He does however; place a lot of doubt in my mind.
So after much thought, agony and tears…. I decided to cancel the surgery at Wake Med…. Was it the right choice…I don’t know.
What I do know is this.
On June 11th I will meet with Dr. Williams in Baltimore for a clinical assessment.
The following Tuesday I will head back to Baltimore for a Shunt Patency test. (This is where they inject die into the shunt reservoir and watch the flow to see if there is a blockage)
Following that, I will admit to Sinai Hospital for a two night stay and have an ICP monitor placed ( this is placed into the current shunt/brain) to measure the pressure for 48 hours.
After that…I just don’t know.
It has been a crazy ride so far and to tell you the truth, I want a break!! I am all for adventure but I don’t think this is what I had in mind.
But I will say this. Never give up trying to find information. You just never know where you will find it. I signed up on a great website/chat forum and found a wonderful group a people going through the same thing as me. I may have never met any of them in person but it feels as if they are always right there with a shoulder to lean on.
And never be afraid to call the experts in the medical field. What’s the worst that can happen? They don’t call you back? But there are those times were medical professionals like Dr. Tanne really care to help everyone they come in contact with. His last words with my Mother were for either of us to call back if we had any questions, and I believe he sincerely meant it.
Lastly, I wrote once about Great Expectations and how I got burnt on them…Sigh. I am really hoping and praying that Sinai and Life Bridge Health do not turn out to be another Cleveland Clinic. But the difference this time is he saw all my records before hand and had to except me as a patient.
So I just have to have a little faith and trust. Not necessarily Great Expectations, because I have now realized that for now those can never be met as there is no cure for Intracranial Hypertension. Maybe one day but for know I just need to learn how to deal with what has been handed to me.
I will try to up date a little better and after each appointment.
So may we all smile a little bigger, laugh a little longer and hug a little tighter….
Life is a journey that takes us many places. Life is an unexpected blessing.
Life can throw you a curve ball and it can happen in a second and it can change your life forever.
Life is short…Pray Hard.
Ummm yea….too many choices
Which one to choose… the fish, chicken, meat, liver…?
Life is like a buffet line..no really it is….let me tell you why.
When you go to a buffet there are a zillion choices of food items. They all look wonderful. Right?
From the salad bar to the dessert bar your tongue starts watering…come on you know it does. You know you just want to grab a huge spoon and start dipping into everything right there with wild abandon..opps that’s my gluttoness dream and not yours…
Well how the sam hill is life like a buffet? Well its all about options and choices and having to choose. It’s nice to say you want everything on the buffet (life) but in actuality we have to choose bits and pieces off the buffet (life) and pray to God that we make the right choices and don’t get heartburn in the process….
Sigh…sometimes…I think I look too deep into things. This may be one of them.
So this is going to be a long blog entry so grab your vodka, beer or coffee…whatever your drink of choice is and settle in and don’t say I did not warn you…OK? OK
So my Neurosurgeon visit….OMG what Drama….
Let me say that I do love my Neurosurgeon…he is wonderful and very honest. He comes in and basically says that he does not really know what to do with me. He has only treated 4 patients with my disease and I am the 4th. He also says that he is so sorry for all the pain I am in. (Yea, me too) He says that the only thing he can do is to place an lumbar peritonerial shunt (LP) . At the same time he cannot guarantee that this will do any good. He cannot say that this will rid me of the daily pain I am in. OK then…
Pause for dramatic effect…
So……What does he say…. He says that if I want he will do the surgery.
Yes, you read that right it was not a typo. He will do the surgery if I want.
Wooooo….Hold on here..You have got to be kidding me. My Neurosurgeon is telling me that if I want he will do surgery. Hmmmm. No pressure.
So, we leave and discussion begins.
Lets face it people, I am a Purchasing Manger. I deal with China and Germany not Medical lingo..what the hell do I know….
I will save you all the details and cut to the chase.
I have decided to have the surgery. After much debate and consideration the benefit outweighs the risks. Also, if I don’t have the surgery I will always wonder if that would have been the “fix” for me.
As of now surgery is scheduled for Wednesday at Wake Med. I will be having this shunt placed in my back and will spend at least one night in the hospital.
HOLD UP>>> WAIT A MINUTE>>>>>>
That’s way to easy….Right?……Right.
Life is a Buffet…and it’s all about choices….
Texas Toast or Muffin…you choose.
Life is never easy and why in the Sam hill did you think this would be a smooth operation? No pun intended.
What you don’t see is the back story (per say) that is going on in my life…..
I have a great friend, Michelle that I have never met in person. LOL. We met on a chat board for Intracranial Hypertension and then became friends on Face book.
She posted a link for an upcoming talk show on Intracranial Hypertension on www.blogtalkradio.com with Dr. Tanne. who is the founder of the Intracranial Hypertension foundation. I, in turn also posted the link. My wonderful mother listened to his show and decided what the hay, I will call him.
Guess what? She spent about an hour on the phone with him.
He recommended a Doctor in Baltimore that specializes in Intracranial Hypertension. Dr. Michael Williams. He is with Sinai Hospital in Baltimore. She called, talked to his nurse; she said send your record and we will see if he accepts you.
So, I, the ever pessimistic person hold no faith in this. After the Cleveland Clinic disaster and being turned down by the Mayo Clinic who could blame me.
But as I am preparing for surgery, I get word that Dr. Williams wants to talk to me via phone on Monday. Mind you that on this day at twelve o’clock I had my pre op phone call with Wake Med. I was all set to go with surgery.
Long…long story short and 45 minutes later talking with Dr. Williams he wants to accept me into his practice. But he will not come right out and say that I do not need to have the surgery that is planned. He does however; place a lot of doubt in my mind.
So after much thought, agony and tears…. I decided to cancel the surgery at Wake Med…. Was it the right choice…I don’t know.
What I do know is this.
On June 11th I will meet with Dr. Williams in Baltimore for a clinical assessment.
The following Tuesday I will head back to Baltimore for a Shunt Patency test. (This is where they inject die into the shunt reservoir and watch the flow to see if there is a blockage)
Following that, I will admit to Sinai Hospital for a two night stay and have an ICP monitor placed ( this is placed into the current shunt/brain) to measure the pressure for 48 hours.
After that…I just don’t know.
It has been a crazy ride so far and to tell you the truth, I want a break!! I am all for adventure but I don’t think this is what I had in mind.
But I will say this. Never give up trying to find information. You just never know where you will find it. I signed up on a great website/chat forum and found a wonderful group a people going through the same thing as me. I may have never met any of them in person but it feels as if they are always right there with a shoulder to lean on.
And never be afraid to call the experts in the medical field. What’s the worst that can happen? They don’t call you back? But there are those times were medical professionals like Dr. Tanne really care to help everyone they come in contact with. His last words with my Mother were for either of us to call back if we had any questions, and I believe he sincerely meant it.
Lastly, I wrote once about Great Expectations and how I got burnt on them…Sigh. I am really hoping and praying that Sinai and Life Bridge Health do not turn out to be another Cleveland Clinic. But the difference this time is he saw all my records before hand and had to except me as a patient.
So I just have to have a little faith and trust. Not necessarily Great Expectations, because I have now realized that for now those can never be met as there is no cure for Intracranial Hypertension. Maybe one day but for know I just need to learn how to deal with what has been handed to me.
I will try to up date a little better and after each appointment.
So may we all smile a little bigger, laugh a little longer and hug a little tighter….
Life is a journey that takes us many places. Life is an unexpected blessing.
Life can throw you a curve ball and it can happen in a second and it can change your life forever.
Life is short…Pray Hard.
Sunday, March 22, 2009
The Microwave....Run for Your Lives......
The Microwave…Run for your lives….
There is an appliance in my kitchen that has me scared.
It is out to get me.
I can’t go near it.
I think it knows it….. hehehe
No, now don’t panic my friends, I have not lost it and don’t need a one way ticket to the funny farm, but hey ya never know.
I was told by the Neurosurgeon not to use the Microwave, not to be near it.
Say what???? Are you serious???
Side note…
(Shunts are adjusted by magnets)
Now let me just say that I know if I go and have an MRI, I can but have to go and have my shunt reset because after all an MRI uses strong magnets and therefore can reset my shunt.
But a microwave?????
I really need to ask more questions about this.
Does this mean don’t stick your head in it and turn in on….well duh???
Or does it simply mean don’t stand in front of it when it is on?
Not sure?
For now the kids are having a blast while I stand back wondering what the “safe” distance between me and the evil microwave is…..
There is an appliance in my kitchen that has me scared.
It is out to get me.
I can’t go near it.
I think it knows it….. hehehe
No, now don’t panic my friends, I have not lost it and don’t need a one way ticket to the funny farm, but hey ya never know.
I was told by the Neurosurgeon not to use the Microwave, not to be near it.
Say what???? Are you serious???
Side note…
(Shunts are adjusted by magnets)
Now let me just say that I know if I go and have an MRI, I can but have to go and have my shunt reset because after all an MRI uses strong magnets and therefore can reset my shunt.
But a microwave?????
I really need to ask more questions about this.
Does this mean don’t stick your head in it and turn in on….well duh???
Or does it simply mean don’t stand in front of it when it is on?
Not sure?
For now the kids are having a blast while I stand back wondering what the “safe” distance between me and the evil microwave is…..
Monday, March 16, 2009
And the Rest of the Story Part II
Okay people you are about to be bombarded with blog post so don't say you were not warned....
Okay?.....Okay....
I have some exciting news, well exciting to me anyway so just sit there and pretend to act excited...Deal?...Deal
Continued form last post
We headed into Rex on March 6th and I got prepped for surgery. I was a ball of nerves...Hell who would not be.
Lets face it I am letting them cut open my head..willingly
We head into the operating room and they give me those nice sleepy meds.....zzzzzzzz I go
When I wake up what do you think my first reaction is?
Come on now, play along...guess
I looked around for someone I knew........nope
I tried to stand up...nope
I tried to talk...nope
The correct answer would be, I felt my head and realized that the Doctor has shaved, yes shaved part of my hair. EEKKKKKKKK!!!!!
Now in retrospect, it is a totally vanity thing and I have very long hair and unless I wear it down, which by the way aint gonna happen, so don't expect it, you cant tell that I am missing a three inch wide section of hair.
Now why it never dawned on me that he would have to do this, heaven only knows. But the hair thing is a mute point know as we all know it will grow back and like I said, none of you are ever, I mean EVER going to see the shaved head side of me, trust me its not a pretty site.
So I was placed in step down ICU and that was another shock, what the heck.
I think I still had not come to terms that this was Brain Surgery. I still don't think I have.
I was released the next day and was hopeful that all the pain in my head would be gone.
Right?
Wrong?
Everyday since the shunt placement my head has hurt. Sometimes it only hurts a little others it feels like Fat Albert is jumping on it constantly.
Everyday brings new issues, new symptoms, new challenges....sigh.....
The shunt I have placed was put into my head. It almost feels (to me) like a golf ball has become stuck inside my skull. They then attached tubing to the shunt and ran it down my neck, past the collar bone and it end in my abdomen where the excess spinal fluid drain.
If you did not stop reading, or need a cold cloth, or just threw up a little, take a moment I will wait.
.
.
.
Okay wait over
The initial setting (from surgery) they put the shunt on was 8 (remember my initial pressure was 43 and normal is 20) and I was still having issues so I went in and had it adjusted.
Adjusted..what the hay, how do you have it adjusted.
Well , by George, it is an adjustable shunt. The Neurosurgeon has a device he places on my head and he can adjust the pressure up or down.
So I had it adjusted to 14-15 which now I fear is to high.
As of today my stitches are out of my head and my abdomen.
I still battle the head pain....daily
My ears fill like I am underwater all the time.
I am dizzy constantly, standing up or sitting down
My peripheral vision, down and to the left has now started to blur
The left side of my face is numb as it has been since the end of January
I don't sleep
My left side has pain that comes and goes
I have searing head pain sometimes that feels like a hot pan has been placed on my head
I have trouble with nausea and vomiting that comes and goes as it pleases.
So the shunt was not a be all end all fix and in fact a shunt is only 50% of the fix most of the time in patients.
I am now learning a lot and while the above seems scary and horrible I have found that others with my condition experience the same thing.
Now for the next post and some awesome, exciting news.
Okay?.....Okay....
I have some exciting news, well exciting to me anyway so just sit there and pretend to act excited...Deal?...Deal
Continued form last post
We headed into Rex on March 6th and I got prepped for surgery. I was a ball of nerves...Hell who would not be.
Lets face it I am letting them cut open my head..willingly
We head into the operating room and they give me those nice sleepy meds.....zzzzzzzz I go
When I wake up what do you think my first reaction is?
Come on now, play along...guess
I looked around for someone I knew........nope
I tried to stand up...nope
I tried to talk...nope
The correct answer would be, I felt my head and realized that the Doctor has shaved, yes shaved part of my hair. EEKKKKKKKK!!!!!
Now in retrospect, it is a totally vanity thing and I have very long hair and unless I wear it down, which by the way aint gonna happen, so don't expect it, you cant tell that I am missing a three inch wide section of hair.
Now why it never dawned on me that he would have to do this, heaven only knows. But the hair thing is a mute point know as we all know it will grow back and like I said, none of you are ever, I mean EVER going to see the shaved head side of me, trust me its not a pretty site.
So I was placed in step down ICU and that was another shock, what the heck.
I think I still had not come to terms that this was Brain Surgery. I still don't think I have.
I was released the next day and was hopeful that all the pain in my head would be gone.
Right?
Wrong?
Everyday since the shunt placement my head has hurt. Sometimes it only hurts a little others it feels like Fat Albert is jumping on it constantly.
Everyday brings new issues, new symptoms, new challenges....sigh.....
The shunt I have placed was put into my head. It almost feels (to me) like a golf ball has become stuck inside my skull. They then attached tubing to the shunt and ran it down my neck, past the collar bone and it end in my abdomen where the excess spinal fluid drain.
If you did not stop reading, or need a cold cloth, or just threw up a little, take a moment I will wait.
.
.
.
Okay wait over
The initial setting (from surgery) they put the shunt on was 8 (remember my initial pressure was 43 and normal is 20) and I was still having issues so I went in and had it adjusted.
Adjusted..what the hay, how do you have it adjusted.
Well , by George, it is an adjustable shunt. The Neurosurgeon has a device he places on my head and he can adjust the pressure up or down.
So I had it adjusted to 14-15 which now I fear is to high.
As of today my stitches are out of my head and my abdomen.
I still battle the head pain....daily
My ears fill like I am underwater all the time.
I am dizzy constantly, standing up or sitting down
My peripheral vision, down and to the left has now started to blur
The left side of my face is numb as it has been since the end of January
I don't sleep
My left side has pain that comes and goes
I have searing head pain sometimes that feels like a hot pan has been placed on my head
I have trouble with nausea and vomiting that comes and goes as it pleases.
So the shunt was not a be all end all fix and in fact a shunt is only 50% of the fix most of the time in patients.
I am now learning a lot and while the above seems scary and horrible I have found that others with my condition experience the same thing.
Now for the next post and some awesome, exciting news.
The Rest of the Story....For Now....
So how in the heck did I get here.....and how do I get back???
Well I can't go back but man I wish I could, life was easier before January 30th, 2009.
That’s the day my life really....well got complicated, to say it nicely.
I worked half a day, went to my mothers house, went upstairs, fell asleep and the pain just never stopped.
What’s funny is I even remember what I wore to work that day. I had on black pants, a yellow sweater and black boots. It’s funny how we remember those small details.
I thought it was another migraine...I thought I had been having them for about a year.
The kind of headache where you feel your eyes may explode from the light and all you can do is hide under the covers and hope for relief. Not to mention the vomiting and sweating that goes with it but I will spare you those details.
A few days later and a couple of trips to see my General Practinoer with shots of Nubain and Phenegran, the headache/Migraine pain was still there. Hmmmm not good.
With some gentle (well maybe not) prodding he referred me to a Neurologist as I had maxed out on Narcotic shots (three within a 1 1/2 week span).
The Neurogist, what can I say nice about him....well not much..Because isn’t it if you can't say something nice don’t say anything at all?????
He thinks I am having status migraines (migraines that last over 72 hours) he wants to put me in the hospital to receive DHE treatment (this is an IV fluid treatment that is given over the span of several days)
I agree to this......THREE TIMES!!!!!
Between the span of February to March I was hospitalized three times and given DHE treatment..
Needless to say it did not work.
I had an MRI, it came back fine.
CAT Scan .....fine
Blood Work...fine
Hormone Levels....fine
Rabies Test....fine....Just kidding....you have to have some humor right?
Nothing was working....At best I am in a blur, a time warp. The days go buy and I am on so many pain killers I can't tell you much.
I go home only to head back to Rex Hospital...I am worried, Wes is worried, my girls are worried, my family worries, heck the dogs worry but I think that’s just because they are afraid no one will show up to feed them at the appropriate time.
So as I lay in the hospital the Doctor on call for the Neurology office I am seeing suggest doing a spinal tap.
WHY??
Well why not... We have done everything else...lets rule out infection.
But what he finds is that my spinal pressure is at 43 YIKES!!!!!
YIKES....because normal is 20....
What I have is double and that is not good.
Two days later they do another spinal tap hoping the first reduced some pressure....
NOPEIt came back at 38.
The diagnosis Intracranial Hypertension or as it is also called Psedudotumor.
I, Wes, everyone ask what does this mean????
Short answer, I need a shunt to drain all the excess fluid off my head....NICE
I ask do I have to??? And I swear to you the Neurologist reply was "You must be delusional if you think you are not having surgery" Wow...that’s some kinda bedside manner for ya...at least he was honest....
So in numbness and dumbness I leave the hospital with a surgery date in hand...March 6th...
We shall get to the rest of the story tomorrow
Well I can't go back but man I wish I could, life was easier before January 30th, 2009.
That’s the day my life really....well got complicated, to say it nicely.
I worked half a day, went to my mothers house, went upstairs, fell asleep and the pain just never stopped.
What’s funny is I even remember what I wore to work that day. I had on black pants, a yellow sweater and black boots. It’s funny how we remember those small details.
I thought it was another migraine...I thought I had been having them for about a year.
The kind of headache where you feel your eyes may explode from the light and all you can do is hide under the covers and hope for relief. Not to mention the vomiting and sweating that goes with it but I will spare you those details.
A few days later and a couple of trips to see my General Practinoer with shots of Nubain and Phenegran, the headache/Migraine pain was still there. Hmmmm not good.
With some gentle (well maybe not) prodding he referred me to a Neurologist as I had maxed out on Narcotic shots (three within a 1 1/2 week span).
The Neurogist, what can I say nice about him....well not much..Because isn’t it if you can't say something nice don’t say anything at all?????
He thinks I am having status migraines (migraines that last over 72 hours) he wants to put me in the hospital to receive DHE treatment (this is an IV fluid treatment that is given over the span of several days)
I agree to this......THREE TIMES!!!!!
Between the span of February to March I was hospitalized three times and given DHE treatment..
Needless to say it did not work.
I had an MRI, it came back fine.
CAT Scan .....fine
Blood Work...fine
Hormone Levels....fine
Rabies Test....fine....Just kidding....you have to have some humor right?
Nothing was working....At best I am in a blur, a time warp. The days go buy and I am on so many pain killers I can't tell you much.
I go home only to head back to Rex Hospital...I am worried, Wes is worried, my girls are worried, my family worries, heck the dogs worry but I think that’s just because they are afraid no one will show up to feed them at the appropriate time.
So as I lay in the hospital the Doctor on call for the Neurology office I am seeing suggest doing a spinal tap.
WHY??
Well why not... We have done everything else...lets rule out infection.
But what he finds is that my spinal pressure is at 43 YIKES!!!!!
YIKES....because normal is 20....
What I have is double and that is not good.
Two days later they do another spinal tap hoping the first reduced some pressure....
NOPEIt came back at 38.
The diagnosis Intracranial Hypertension or as it is also called Psedudotumor.
I, Wes, everyone ask what does this mean????
Short answer, I need a shunt to drain all the excess fluid off my head....NICE
I ask do I have to??? And I swear to you the Neurologist reply was "You must be delusional if you think you are not having surgery" Wow...that’s some kinda bedside manner for ya...at least he was honest....
So in numbness and dumbness I leave the hospital with a surgery date in hand...March 6th...
We shall get to the rest of the story tomorrow
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