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.
Showing posts with label Headache. Show all posts
Showing posts with label Headache. Show all posts
Tuesday, November 3, 2009
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.
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.
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
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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