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.
Showing posts with label Intracranial Hypertension. Show all posts
Showing posts with label Intracranial Hypertension. Show all posts
Tuesday, August 4, 2009
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.
Wednesday, April 1, 2009
My Appointment at Duke
My Appointment at Duke
One thing about me, if you already did not know, is that I am an eternal pessimist.
I see the glass half empty, the pack of crackers half gone before you even open them. In fact I have been known to say “Always expect the worst, that way you will never be disappointed just pleasantly surprised”
Now, is that the correct way to see things, probably not, but hey that’s who I am.
Going to the appointment today at Duke I was determined not to have any expectations, especially after the appointment I had at the Cleveland Clinic in Florida.
So let’s regroup real quick ..yes folks this makes the third, yes third Neurologist that I will have seen since the end of January.
The first, lets call him Dr. Idiot….hehehe. He felt that after the diagnosis of Intracranial Hypertension there was nothing more he could do and that migraines were no longer part of the equation. We parted ways with a mutual firing of the sorts.
The second, will call him Dr. Feel Good..yep that sums him up. This was the Doctor at the Cleveland Clinic in Florida. Now don’t get me wrong he was a wonderful Doctor and actually thought that I could still be having some migraine issues. So why Dr. Feel Good? He emphasized a lot about stress and dealing with that. Mind over matter was his idea. He is the one who recommend the Pain Clinic at Duke.
So that brings us to today….yes today. My no expectations day….well maybe just one.
I did tell Mom that if this Doctor even so much as asked “Why are you here” I was going to leave….but first roll my eyes and say “Duh, I’ve had a headache everyday since January 31st of this year…everyday”
No folks, I was not going to do that, I am not that way. But isn’t it fun sometimes to imagine ourselves being that bold.
We had virtually no wait once we arrived. Wow, that’s a good start.
Met with a nurse and she took the usual information. I always like the part when they ask what medicines you are allergic to. LOL, Because for me its not so much that I am allergic to any medicine, it’s that some just don’t sit well with me.
Take for instance Ambien
Now Mom calm down (I know you are reading) I’m not going to share my experience with the evil drug Ambien, not now, not ever…Well maybe one day if I ever have to much to drink and you ask me to tell it. Let’s just say I bet if you Google Ambien stories you will laugh until your sides hurt over the stories people share about this. Trust me.
After the usual nurse Q & A we head back into the room and I just know it will be forever before Dr. C makes his grand appearance. But no, not even five minutes pass and he is in the room…..Impressive.
And he gets right down to business… At first I am a little put off by this, but he is wonderful.
And now here are the highlights:
-The Lumbar Puncture that I had: the levels were high enough that they were almost to the
point of being in danger of vision loss.
-Patients with Intracranial Hypertension can also and most times have issues with
migraines and these need to be treated as two separate issues.
-My MRI and MVR show no signs of anything life threatening.
no further diagnostic testing will be done for now.
-I need to be on a preventative medication (taken everyday)
since I am already taking Topamx he also added Verapamil
- I need to have an abortive medication ( medicine taken at first sign of migraine)
he gave me a sample of two to try Relpax and Maxalt
-I need a rescue medication (medicine taken when the previous does not work, this
medicine is intended to knock you out) He prescribed Seroquel.
Most importantly to me he said that if these don’t work there are other options to try and that we will continue until we find the combination that works.
Whew…what a relief….. A neurologist that understands Intracranial Hypertension, and understands the pain that I am in everyday of my life. A Doctor that is not going to give up on me on the first try.
So why did it take three try’s at a Neurologist to find one that fits for me you ask?
Because Intracranial Hypertension is a rare disorder.
Because not every Doctor is right for every patient.
No, this Doctor did not have a magic answer, shot or medication to get rid of these daily headaches.
Yes, I am happy with today’s appointment and feel like someone is finally listening and understanding what I am going through and wants to help.
I don’t expect to have these headaches gone overnight, but wouldn’t that be nice.
I do have faith and hope that in time life will be back to normal or at least what I call normal.
I will follow up with Dr. C in four weeks and I have my fingers crossed that this combination of medication will provide some relief. But, if not at least this time I know he has more ideas up his sleeve, and I am okay with that.
“The human body experiences a powerful gravitational pull in the direction of hope. That is why the patient’s hopes are the physician’s secret weapon. They are the hidden ingredients in any prescription” Norman Cousins
-
One thing about me, if you already did not know, is that I am an eternal pessimist.
I see the glass half empty, the pack of crackers half gone before you even open them. In fact I have been known to say “Always expect the worst, that way you will never be disappointed just pleasantly surprised”
Now, is that the correct way to see things, probably not, but hey that’s who I am.
Going to the appointment today at Duke I was determined not to have any expectations, especially after the appointment I had at the Cleveland Clinic in Florida.
So let’s regroup real quick ..yes folks this makes the third, yes third Neurologist that I will have seen since the end of January.
The first, lets call him Dr. Idiot….hehehe. He felt that after the diagnosis of Intracranial Hypertension there was nothing more he could do and that migraines were no longer part of the equation. We parted ways with a mutual firing of the sorts.
The second, will call him Dr. Feel Good..yep that sums him up. This was the Doctor at the Cleveland Clinic in Florida. Now don’t get me wrong he was a wonderful Doctor and actually thought that I could still be having some migraine issues. So why Dr. Feel Good? He emphasized a lot about stress and dealing with that. Mind over matter was his idea. He is the one who recommend the Pain Clinic at Duke.
So that brings us to today….yes today. My no expectations day….well maybe just one.
I did tell Mom that if this Doctor even so much as asked “Why are you here” I was going to leave….but first roll my eyes and say “Duh, I’ve had a headache everyday since January 31st of this year…everyday”
No folks, I was not going to do that, I am not that way. But isn’t it fun sometimes to imagine ourselves being that bold.
We had virtually no wait once we arrived. Wow, that’s a good start.
Met with a nurse and she took the usual information. I always like the part when they ask what medicines you are allergic to. LOL, Because for me its not so much that I am allergic to any medicine, it’s that some just don’t sit well with me.
Take for instance Ambien
Now Mom calm down (I know you are reading) I’m not going to share my experience with the evil drug Ambien, not now, not ever…Well maybe one day if I ever have to much to drink and you ask me to tell it. Let’s just say I bet if you Google Ambien stories you will laugh until your sides hurt over the stories people share about this. Trust me.
After the usual nurse Q & A we head back into the room and I just know it will be forever before Dr. C makes his grand appearance. But no, not even five minutes pass and he is in the room…..Impressive.
And he gets right down to business… At first I am a little put off by this, but he is wonderful.
And now here are the highlights:
-The Lumbar Puncture that I had: the levels were high enough that they were almost to the
point of being in danger of vision loss.
-Patients with Intracranial Hypertension can also and most times have issues with
migraines and these need to be treated as two separate issues.
-My MRI and MVR show no signs of anything life threatening.
no further diagnostic testing will be done for now.
-I need to be on a preventative medication (taken everyday)
since I am already taking Topamx he also added Verapamil
- I need to have an abortive medication ( medicine taken at first sign of migraine)
he gave me a sample of two to try Relpax and Maxalt
-I need a rescue medication (medicine taken when the previous does not work, this
medicine is intended to knock you out) He prescribed Seroquel.
Most importantly to me he said that if these don’t work there are other options to try and that we will continue until we find the combination that works.
Whew…what a relief….. A neurologist that understands Intracranial Hypertension, and understands the pain that I am in everyday of my life. A Doctor that is not going to give up on me on the first try.
So why did it take three try’s at a Neurologist to find one that fits for me you ask?
Because Intracranial Hypertension is a rare disorder.
Because not every Doctor is right for every patient.
No, this Doctor did not have a magic answer, shot or medication to get rid of these daily headaches.
Yes, I am happy with today’s appointment and feel like someone is finally listening and understanding what I am going through and wants to help.
I don’t expect to have these headaches gone overnight, but wouldn’t that be nice.
I do have faith and hope that in time life will be back to normal or at least what I call normal.
I will follow up with Dr. C in four weeks and I have my fingers crossed that this combination of medication will provide some relief. But, if not at least this time I know he has more ideas up his sleeve, and I am okay with that.
“The human body experiences a powerful gravitational pull in the direction of hope. That is why the patient’s hopes are the physician’s secret weapon. They are the hidden ingredients in any prescription” Norman Cousins
-
Friday, March 27, 2009
When Life Hands You Lemons
When Life Hands You Lemons…..
Make Lemonade????
I really hate that saying….because unless you have sugar it’s going to taste really bitter.
But life is like that sometimes, bittersweet.
Make Lemonade????
I really hate that saying….because unless you have sugar it’s going to taste really bitter.
But life is like that sometimes, bittersweet.
Graduation was bittersweet.
Divorce was bittersweet.
Being single was bittersweet.
Watching the girls grow older and more independent is bittersweet……
But Life is all about change and dealing with change.
Whether we like it or not the one constant in life is change……
I had to have my hair cut, it was inevitable. I was missing a three inch section of hair. It was noticeable to say the least. My wonderful mother drove me to the salon and sat in the other room just to be there as support. Hair is the least of my problems these days. I have a record long list of more important things to worry about but for the time being this was something I could control, I could decide, I could have a say in.
It seems so vain to be worried about hair….but a haircut and a hairstyle is a personal thing…It’s a reflection of personality, of spirit, of who we are.
I have always been the girl with long hair….always…..so with IH not only has it taken away months of my life that I can never get back, hospital stays, medical bills, missed ballgames, laughter….it has taken away my long hair…..my long hair that was a huge part of me….
It may be vain….
It may be silly…
It’s a small thing on a list of huge things….but I could tackle that one today…..
Change is bittersweet….
We like the comfort of what we know, we like the routine, we like to know what’s around the corner….
But maybe just maybe….we need to be handed more lemons in our life’s and find ways to make more than just lemonade.
Thursday, March 19, 2009
Great Expectations
Great Expectations…
Ever plan to go see a movie because the previews looked soooo good , get all hyped up, go see it and come out of the movie theater going “What the ???? , that was horrible”
Ever go out to eat and see something on the menu that looked like it would be the most amazing meal of your life only that when you order it, it’s only so-so and you can’t find much good to say about it but can’t find much bad to say about it either.
These are what we as people build up as Great Expectations. This is what I did with my appointment in Florida at the Cleveland Clinic. I had Great Expectations. I just knew, just knew that this was the be all end all of where I needed to be when it came to IH.
I was wrong.
I did not post yesterday because well, frankly you would not have wanted a rambling mess and to be honest I was not sure how I really felt about the appointment yet.
So I had some time to talk with Wes, and we talked about the appointment and I did realize that yes some good did come out of it. My Great Expectation however, were just not met.
In a nutshell…
They put me on Diamox and back on Topamax
This could still be Migraine related as well as IH
I have to “learn” how to deal with the possibility of having a headache everyday
He agrees with the diagnosis of IH
Whoaaaa What was that?… yep you read that right. I may have to learn how to deal with a headache everyday. Ummmm, that is not what I wanted to hear. Now I could learn how to deal with eating a Twix bar every 20 minutes but a headache everyday…that’s a little much.
Of course there is more of the appointment but hey this is a blog and I am only going to share and bore you with so much…..
Overall….He was a nice Doctor, he had some new perspective, he had some new avenues for us to follow.
Going back ….no
Great Expectations….we all have them. We take an idea, a place, a person, or a thing and build it up so big in our minds . We make this “thing” so perfect, so wonderful that in reality that “thing” can never be that….well…..great.
Great Expectations…that’s what I had for the Cleveland Clinic….
Now I leave Florida and head home. Not dragging my head in despair, not crying or saying that was a waste of time…But with my Great Expectations in check….and ready to place them somewhere else.
Ever plan to go see a movie because the previews looked soooo good , get all hyped up, go see it and come out of the movie theater going “What the ???? , that was horrible”
Ever go out to eat and see something on the menu that looked like it would be the most amazing meal of your life only that when you order it, it’s only so-so and you can’t find much good to say about it but can’t find much bad to say about it either.
These are what we as people build up as Great Expectations. This is what I did with my appointment in Florida at the Cleveland Clinic. I had Great Expectations. I just knew, just knew that this was the be all end all of where I needed to be when it came to IH.
I was wrong.
I did not post yesterday because well, frankly you would not have wanted a rambling mess and to be honest I was not sure how I really felt about the appointment yet.
So I had some time to talk with Wes, and we talked about the appointment and I did realize that yes some good did come out of it. My Great Expectation however, were just not met.
In a nutshell…
They put me on Diamox and back on Topamax
This could still be Migraine related as well as IH
I have to “learn” how to deal with the possibility of having a headache everyday
He agrees with the diagnosis of IH
Whoaaaa What was that?… yep you read that right. I may have to learn how to deal with a headache everyday. Ummmm, that is not what I wanted to hear. Now I could learn how to deal with eating a Twix bar every 20 minutes but a headache everyday…that’s a little much.
Of course there is more of the appointment but hey this is a blog and I am only going to share and bore you with so much…..
Overall….He was a nice Doctor, he had some new perspective, he had some new avenues for us to follow.
Going back ….no
Great Expectations….we all have them. We take an idea, a place, a person, or a thing and build it up so big in our minds . We make this “thing” so perfect, so wonderful that in reality that “thing” can never be that….well…..great.
Great Expectations…that’s what I had for the Cleveland Clinic….
Now I leave Florida and head home. Not dragging my head in despair, not crying or saying that was a waste of time…But with my Great Expectations in check….and ready to place them somewhere else.
Wednesday, March 18, 2009
Disney-Doctors-Cruise Ships?? One of these things is not like the other!
Where's Waldo?
Don't you love those books? Piper does, but at the same time you can see the look on her face that the concept of a book dedicated to finding a funny guy in a hat is strange...Oh well, that's entertainment sometimes.
We wake up in sunny South Florida today....well actually its rainy outside but still.
We are usually in Florida for one of two things. Things that Wes and myself are obsessed with.
Disney and Cruises.
In fact we are taking the girls on their first cruise over July 4th.
But alas this time we are not.
We are here to go to Cleveland Clinic in Weston to try to figure out if I even have a brain these days. ( actually we have my MRI on a CD so AHHH HAAA I have proof for all of you that yes indeed I do have a brain)
I really am very apprehensive about this appointment and all the "what if"s" but who would not be.
Flying:
Don't you love to fly? No, I don't mean going 90 down the highway or jumping off your bed going weeeeee!
I love to fly to people watch.
Oh my you say.
How dare I.
Come on get that shocked look off your face, you know you do it too.
No I don't stare anyone down and I am sure people have looked at me and gone hmmmm.
But let's just say there are some interesting people in this world.. Like the guy with his whole face tattooed, or the lady with every inch of her in green ( green clothes, green nails, green hair, green suitcase, green pocketbook, green shoes.) I think she really liked St. Patricks Day....
I will try to update asap on the visit to Clevelan Clinci, but be paitient.......
If your like me, you have no paitence....but we all have to be something.....right?
Don't you love those books? Piper does, but at the same time you can see the look on her face that the concept of a book dedicated to finding a funny guy in a hat is strange...Oh well, that's entertainment sometimes.
We wake up in sunny South Florida today....well actually its rainy outside but still.
We are usually in Florida for one of two things. Things that Wes and myself are obsessed with.
Disney and Cruises.
In fact we are taking the girls on their first cruise over July 4th.
But alas this time we are not.
We are here to go to Cleveland Clinic in Weston to try to figure out if I even have a brain these days. ( actually we have my MRI on a CD so AHHH HAAA I have proof for all of you that yes indeed I do have a brain)
I really am very apprehensive about this appointment and all the "what if"s" but who would not be.
Flying:
Don't you love to fly? No, I don't mean going 90 down the highway or jumping off your bed going weeeeee!
I love to fly to people watch.
Oh my you say.
How dare I.
Come on get that shocked look off your face, you know you do it too.
No I don't stare anyone down and I am sure people have looked at me and gone hmmmm.
But let's just say there are some interesting people in this world.. Like the guy with his whole face tattooed, or the lady with every inch of her in green ( green clothes, green nails, green hair, green suitcase, green pocketbook, green shoes.) I think she really liked St. Patricks Day....
I will try to update asap on the visit to Clevelan Clinci, but be paitient.......
If your like me, you have no paitence....but we all have to be something.....right?
Monday, March 16, 2009
Divine Intervention
Divine Intervention
What is that exactly?????
For me it means a miracle, that only God can explain.
What was my Divine intervention today you might ask.
Well my facebook friends know, so I will clue the rest of you in.
I called Cleveland Clinic in Weston Florida to inquire into their Neurology Department and two Doctors that I had heard about that specialized in Intracranial Hypertension. I wanted to see what little old me could do about making an appointment.
We are talking about Doctors that are Specialist here.
We are talking about a very rare disease
We are talking about a huge organization (think Mayo Clinic standards)
We are taking little old me, patient with no pull, trying to get an appointment thinking it would be months out and thinking I would just have to pass the information along to my Neurosurgeon and see if he could move the appointment date up.
Divine Intervention happened to me that very moment on the phone this morning.
As I was talking to the nurse telling her what I was calling about ect..she says "wait....we have a cancellation"....(insert pause) "When are you planning on traveling to Florida" My reply was " As soon as possible" she said---- How about March 18th at 2:00.......
Insert long, whistling pause.......mainly generated by me.. (let me also insert that in my time warp state of brain these days I thought the 18th of March was next week)
So after the pause....which was probably only one second....I said "I'll take it"
So she took all my information down and told me everything I needed to bring.
Let me just say I was stunned.......speechless........
Could this really be happening. I am going to see a Doctor that has over 20 years experience with this new enemy of mine. Yes, Yes, Yes, I am.
More Divine Intervention:
Wes is off the next few day ( he is a pilot so this is a rare thing timing wise)
I had no trouble calling to secure all medical records, and radiology films....I was expecting a fight.
Flights looked good.
I found a decent car rental rate.
A decent hotel rate.
Divine Intervention........only God has the answers sometimes....and maybe we should just not question the hows...
What is that exactly?????
For me it means a miracle, that only God can explain.
What was my Divine intervention today you might ask.
Well my facebook friends know, so I will clue the rest of you in.
I called Cleveland Clinic in Weston Florida to inquire into their Neurology Department and two Doctors that I had heard about that specialized in Intracranial Hypertension. I wanted to see what little old me could do about making an appointment.
We are talking about Doctors that are Specialist here.
We are talking about a very rare disease
We are talking about a huge organization (think Mayo Clinic standards)
We are taking little old me, patient with no pull, trying to get an appointment thinking it would be months out and thinking I would just have to pass the information along to my Neurosurgeon and see if he could move the appointment date up.
Divine Intervention happened to me that very moment on the phone this morning.
As I was talking to the nurse telling her what I was calling about ect..she says "wait....we have a cancellation"....(insert pause) "When are you planning on traveling to Florida" My reply was " As soon as possible" she said---- How about March 18th at 2:00.......
Insert long, whistling pause.......mainly generated by me.. (let me also insert that in my time warp state of brain these days I thought the 18th of March was next week)
So after the pause....which was probably only one second....I said "I'll take it"
So she took all my information down and told me everything I needed to bring.
Let me just say I was stunned.......speechless........
Could this really be happening. I am going to see a Doctor that has over 20 years experience with this new enemy of mine. Yes, Yes, Yes, I am.
More Divine Intervention:
Wes is off the next few day ( he is a pilot so this is a rare thing timing wise)
I had no trouble calling to secure all medical records, and radiology films....I was expecting a fight.
Flights looked good.
I found a decent car rental rate.
A decent hotel rate.
Divine Intervention........only God has the answers sometimes....and maybe we should just not question the hows...
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
What the heck????
I have this new thing in my life..I don't like it..I don't want it...
I now have to deal with it...
I have Intracranial Hypertension...I have to double check the spelling everytime I type it....
I have a shunt in my head....
My head hurts all the time....
No one seems to understand, least of all me....
So what the heck is all this??
I promise this will be the last boring stritly medical post I do...LOL
Taken from the Cleveland Clinic website
Pseudotumor Cerebri(Also Called 'Benign Intracranial Hypertension')
What is Pseudotumor Cerebri?
Pseudotumor cerebri literally means "false brain tumor." It is likely due to high pressure caused by the buildup or poor absorption of cerebrospinal fluid in the subarachnoid space surrounding the brain
In other words my brain makes too much spinal fluid.
Taken from the http://www.mayoclinic.com/
Definition
Pseudotumor cerebri (SOO-doh-too-mur SER-uh-bry) occurs when the pressure inside your skull (intracranial pressure) increases for no obvious reason. Symptoms mimic those of a brain tumor, but no tumor is present. Pseudotumor cerebri can occur in children and adults, but it's most common in obese women of childbearing age.
When no underlying cause for the increased intracranial pressure can be discovered, pseudotumor cerebri may also be called idiopathic intracranial hypertension.
The increased intracranial pressure associated with pseudotumor cerebri can cause swelling of the optic nerve and result in vision loss. Medications often can reduce this pressure, but in some cases, surgery is necessary.
Symptoms:
Pseudotumor cerebri symptoms may include:
Moderate to severe headaches that may originate behind your eyes, wake you from sleep and worsen with eye movement
Ringing in the ears that pulses in time with your heartbeat
Nausea, vomiting or dizziness
Blurred or dimmed vision
Brief episodes of blindness, lasting only a few seconds and affecting one or both eyes
Difficulty seeing to the side
Double vision
Causes
The exact cause of pseudotumor cerebri in most individuals is unknown
It is listed on NORD, the National Organization of Rare Disorders
Anyone can develop Intracranial Hypertensionegardless of age, gender, ethnicity, race or body type. However, it does effect more women than men.
There is no cure, there is no magic fix but it is treatable.....
There is a research foundation http://www.ihrfoundation.org/ that has a lot more information. I have just touched on the basics.
Whewww....from now on we will just talk about me, my family and day to day stuff.
Brandy
I now have to deal with it...
I have Intracranial Hypertension...I have to double check the spelling everytime I type it....
I have a shunt in my head....
My head hurts all the time....
No one seems to understand, least of all me....
So what the heck is all this??
I promise this will be the last boring stritly medical post I do...LOL
Taken from the Cleveland Clinic website
Pseudotumor Cerebri(Also Called 'Benign Intracranial Hypertension')
What is Pseudotumor Cerebri?
Pseudotumor cerebri literally means "false brain tumor." It is likely due to high pressure caused by the buildup or poor absorption of cerebrospinal fluid in the subarachnoid space surrounding the brain
In other words my brain makes too much spinal fluid.
Taken from the http://www.mayoclinic.com/
Definition
Pseudotumor cerebri (SOO-doh-too-mur SER-uh-bry) occurs when the pressure inside your skull (intracranial pressure) increases for no obvious reason. Symptoms mimic those of a brain tumor, but no tumor is present. Pseudotumor cerebri can occur in children and adults, but it's most common in obese women of childbearing age.
When no underlying cause for the increased intracranial pressure can be discovered, pseudotumor cerebri may also be called idiopathic intracranial hypertension.
The increased intracranial pressure associated with pseudotumor cerebri can cause swelling of the optic nerve and result in vision loss. Medications often can reduce this pressure, but in some cases, surgery is necessary.
Symptoms:
Pseudotumor cerebri symptoms may include:
Moderate to severe headaches that may originate behind your eyes, wake you from sleep and worsen with eye movement
Ringing in the ears that pulses in time with your heartbeat
Nausea, vomiting or dizziness
Blurred or dimmed vision
Brief episodes of blindness, lasting only a few seconds and affecting one or both eyes
Difficulty seeing to the side
Double vision
Causes
The exact cause of pseudotumor cerebri in most individuals is unknown
It is listed on NORD, the National Organization of Rare Disorders
Anyone can develop Intracranial Hypertensionegardless of age, gender, ethnicity, race or body type. However, it does effect more women than men.
There is no cure, there is no magic fix but it is treatable.....
There is a research foundation http://www.ihrfoundation.org/ that has a lot more information. I have just touched on the basics.
Whewww....from now on we will just talk about me, my family and day to day stuff.
Brandy
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