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Decompression surgery- need some positive feedback
I am scheduled to have the decompression surgery next month. I am trusting my doctor about the results, but I'm feeling that this is the right thing to do. I was trying to find more information on it and on results and just found some forums with only horrible feedback on the surgery. This is scary to me. I saw a lot of people say they felt worse after the surgery than before.
What I am worried about now is the chance of paralysis as a result, though that was not a risk the neurosurgeon spoke of. I am also worried about new symptoms (based on posts I was reading on other forums) or feeling worse months and years after than I do now. It doesn't make sense to me how that can be though as they are not operating on your brain. It makes sense to me that this will at the least just correct the problem but not make things worse.
I have a few other questions.
The doctor said the recovery pain would initially be bad, Will I want to take things to the hospital to do, like books or puzzlebooks or will I not feel up to that?
Also this may sound strange, but how long will it be before I can wash my hair? I have super greasy hair and if I don't wash it daily or every other day, I can't stand it.
He said he was gonna shave a strip in the back of my head, am I going to want hats or wigs for a time?
I'm getting a bit nervous, but I think I would not matter what surgery i am having, This is just one that I don't know any one who has had it that I can talk to.
What I am worried about now is the chance of paralysis as a result, though that was not a risk the neurosurgeon spoke of. I am also worried about new symptoms (based on posts I was reading on other forums) or feeling worse months and years after than I do now. It doesn't make sense to me how that can be though as they are not operating on your brain. It makes sense to me that this will at the least just correct the problem but not make things worse.
I have a few other questions.
The doctor said the recovery pain would initially be bad, Will I want to take things to the hospital to do, like books or puzzlebooks or will I not feel up to that?
Also this may sound strange, but how long will it be before I can wash my hair? I have super greasy hair and if I don't wash it daily or every other day, I can't stand it.
He said he was gonna shave a strip in the back of my head, am I going to want hats or wigs for a time?
I'm getting a bit nervous, but I think I would not matter what surgery i am having, This is just one that I don't know any one who has had it that I can talk to.
Hi there. Everything you are thinking is completely normal for someone that is headed for surgery.
One thing your NS should have explained to you is that the surgery is not a cure, just a means to stop progression, and unfortunately I dont think that any 2 people have had the same outcome..
As far as the pain goes, I had my surgery on Dec 3rd (after being pushes back once). I remember waking up from the surgery in a lot of pain. BUT I am also allergice to alot of pain medication. It didn't take them long at all to find something that worked for me but honestly, once that was under control I wasnt in pain at all. The only thing I remember hurting was when I coughed.. I am a smoker and did cut back before surgery, but did not stop. I didnt smoke that morning and I remember waking up and a few hours later developing a cough, that smokers get when trying to quit. That hurt.. But other than that they have you medicated enough (hopefully) that you dont feel much pain..
My NS used internal stitching and glue, so day 3 I was taking a shower in the hospial and able to wash my hair. You have to use baby shampoo, but typically with the glue, its an automatic seal.. So it depends on how they close your incision. I do believe with stitches you can not wash your hair until the stitches are removed which I think is 10-14 days.. someone who has stitches could better answer that one.
Also if your dr is only shaving a strip I wouldnt worry about hats or any of that.. If your hair is long it should cover it..
I took some magazines with me and did read them and watched tv, but some peoples pain levels are different than others.. I remember that sunday night I had a nurse come in and yell at me because I was watching the Ravens Steelers game, and apparently the pain medicine had taken all my pain away. I was yelling at the TV so loud they could hear me at the nurses station. She told me that if I didnt stop I was going to bust a stitch, and she was going to turn off the tv...
What kind of symptoms are you having?
I woud make sure your Dr orders testing for all other related conditions as well.
Is your Dr familiar with chiari?
Everything you are worrying about is completely normal. I freaked out and after the first surgery was cancelled(8pm the night before I was suppose to go in), I almost cancelled the second one myself..
You will find here there is alot of people that have been through this, and everyone here is so willing to help!! Good luck to you.. Hopefully I answered some of your questions. I am only 6 weeks out and most things are gone, a few the same but so far, nothing has gotten worse. Only time will tell
One thing your NS should have explained to you is that the surgery is not a cure, just a means to stop progression, and unfortunately I dont think that any 2 people have had the same outcome..
As far as the pain goes, I had my surgery on Dec 3rd (after being pushes back once). I remember waking up from the surgery in a lot of pain. BUT I am also allergice to alot of pain medication. It didn't take them long at all to find something that worked for me but honestly, once that was under control I wasnt in pain at all. The only thing I remember hurting was when I coughed.. I am a smoker and did cut back before surgery, but did not stop. I didnt smoke that morning and I remember waking up and a few hours later developing a cough, that smokers get when trying to quit. That hurt.. But other than that they have you medicated enough (hopefully) that you dont feel much pain..
My NS used internal stitching and glue, so day 3 I was taking a shower in the hospial and able to wash my hair. You have to use baby shampoo, but typically with the glue, its an automatic seal.. So it depends on how they close your incision. I do believe with stitches you can not wash your hair until the stitches are removed which I think is 10-14 days.. someone who has stitches could better answer that one.
Also if your dr is only shaving a strip I wouldnt worry about hats or any of that.. If your hair is long it should cover it..
I took some magazines with me and did read them and watched tv, but some peoples pain levels are different than others.. I remember that sunday night I had a nurse come in and yell at me because I was watching the Ravens Steelers game, and apparently the pain medicine had taken all my pain away. I was yelling at the TV so loud they could hear me at the nurses station. She told me that if I didnt stop I was going to bust a stitch, and she was going to turn off the tv...
What kind of symptoms are you having?
I woud make sure your Dr orders testing for all other related conditions as well.
Is your Dr familiar with chiari?
Everything you are worrying about is completely normal. I freaked out and after the first surgery was cancelled(8pm the night before I was suppose to go in), I almost cancelled the second one myself..
You will find here there is alot of people that have been through this, and everyone here is so willing to help!! Good luck to you.. Hopefully I answered some of your questions. I am only 6 weeks out and most things are gone, a few the same but so far, nothing has gotten worse. Only time will tell
Hello, you and I are in the same boat here. I am waiting on a surgery date which hopefully will be soon. I have read the same horror stories you have. I see a CM specialist and this is the way it was explained to me: We have been this way a long time. At least since we stopped growing maybe since birth. There is no way to know what neurologic function you will get back and in what order it will come. There are some functions that may improve faster than others. There is also the possibility of permanent nerve damage. The NS should have told you the idea is to slow progression as there is no cure. What may have happened to some of these people with horror stories is they had surgery with a doc who is not a specialist and are having complications like brain slump which can happen if too much bone is removed. Try to hang in there, stay strong and try not to worry! Even though I am doing the same.
COMMUNITY LEADER
Hi....we do have several pages in the Health Pages that might be of help- the one most important to u right now- tips for the hospital stay-http://www.medhelp.org/health_pages/Neurological%20Disorders/Tips-for-the-Hospital-Stay/show/1136?cid=186
Take a look at a few journals...click on my name and name of other members to go to their profile page and journal...I have pics and my story of my surgery...it may be helpful to u to read a few.
Many times those that have good results go on and do not bother with forums....how sad, they need to let the newbies know what they went thru and how they r doing....pay it forward...share what u learned from those b4 u....regardless of how ur surgery went.
My chiari surgery went well....I had no set backs...no leak, or infection....and my CSF flow was opened...that was the goal...and I have no developed a syrinx...my biggest goal...so I am very happy.
Many of my bigger more problematic symptoms r gone...or have lessened over time....and that is what we all must do, give it time...go slow...do not expect it to work like a light switch.,..and do not expect to be cured...
Some may develop other issues...set backs...and many times it can have a direct link to who the NS is or how experienced they r....do ur homework ask questions and when u find the right dr u will know.....
As for ur hair...if ur dr said just a strip...take a look at mine...I was told a strip as well...the dr does not do the shaving...lol...but it does grow back...I left mine long and was able to hide my scar with pulling my other hair into a pony tail...I also wore a hat...u do not want the sun to hit the scar....so I was sure to keep it covered in the summer....each dr does things diff...so u really have to ask them the best way to do things after.....
I was told no washing the hair for 6 weeks, but I had glue and sterri strips....yuck....but it was good and clean b4 I went and I got my DH to wash the top....we just did not touch the scar area...lol...
And for what to do in the hospital....make sure u have money to buy items from the deli...I needed food that the hospital could not give....my reflux was flaring up from all the meds and I was being offered tomato sauce covered chicken,...so, since there was nothing on the menu, I sent DH to the deli and got a turkey sandwich...which was perfect for me.
I also did not pay to have the TV turned on or the phone...as I was out of state, and the phone would have been toll calls...and I did not think I would need to talk to neone, plus I have a cell phone....and no TV...I was still sensitive to sound and light...and the roommate had a TV on...I could not deal with 2....so, it was easier for me...no TV and I saved some money....
I would have likes earplugs...it was noisy...the staff at night act like it is the middle of the day.....
The rest of the items r on the page I gave u the link to.....
Now as for being nervous, that is normal...if u weren't I'd be scared for u....again read my journal, u will see I was scared too : )
Please keep us posted
"selma"
Take a look at a few journals...click on my name and name of other members to go to their profile page and journal...I have pics and my story of my surgery...it may be helpful to u to read a few.
Many times those that have good results go on and do not bother with forums....how sad, they need to let the newbies know what they went thru and how they r doing....pay it forward...share what u learned from those b4 u....regardless of how ur surgery went.
My chiari surgery went well....I had no set backs...no leak, or infection....and my CSF flow was opened...that was the goal...and I have no developed a syrinx...my biggest goal...so I am very happy.
Many of my bigger more problematic symptoms r gone...or have lessened over time....and that is what we all must do, give it time...go slow...do not expect it to work like a light switch.,..and do not expect to be cured...
Some may develop other issues...set backs...and many times it can have a direct link to who the NS is or how experienced they r....do ur homework ask questions and when u find the right dr u will know.....
As for ur hair...if ur dr said just a strip...take a look at mine...I was told a strip as well...the dr does not do the shaving...lol...but it does grow back...I left mine long and was able to hide my scar with pulling my other hair into a pony tail...I also wore a hat...u do not want the sun to hit the scar....so I was sure to keep it covered in the summer....each dr does things diff...so u really have to ask them the best way to do things after.....
I was told no washing the hair for 6 weeks, but I had glue and sterri strips....yuck....but it was good and clean b4 I went and I got my DH to wash the top....we just did not touch the scar area...lol...
And for what to do in the hospital....make sure u have money to buy items from the deli...I needed food that the hospital could not give....my reflux was flaring up from all the meds and I was being offered tomato sauce covered chicken,...so, since there was nothing on the menu, I sent DH to the deli and got a turkey sandwich...which was perfect for me.
I also did not pay to have the TV turned on or the phone...as I was out of state, and the phone would have been toll calls...and I did not think I would need to talk to neone, plus I have a cell phone....and no TV...I was still sensitive to sound and light...and the roommate had a TV on...I could not deal with 2....so, it was easier for me...no TV and I saved some money....
I would have likes earplugs...it was noisy...the staff at night act like it is the middle of the day.....
The rest of the items r on the page I gave u the link to.....
Now as for being nervous, that is normal...if u weren't I'd be scared for u....again read my journal, u will see I was scared too : )
Please keep us posted
"selma"
My first post here may have been one of the ones you read and if so, I sincerely apologize for scaring you! While it's true I am currently frustrated and my surgery (in 2007) hasn't given me fantastic results, I can't say I regret the decision to have it, nor would I hesitate to have another surgery if I truly thought it would help me. Just like selmaS said, many people who do well after surgery aren't on the forums, so you are only getting a small part of the picture when you read the posts here. And as theb9 said, no 2 people will have the same results, so just because I wasn't thrilled doesn't mean you won't be either.
As for your question about risks, I can only tell you what my neurologist told me: this surgery is the tonsillectomy of brain surgeries. The least risky you can get.
Other general info - my hair is like yours, so I was dying to wash it as soon as I could. Be sure to have baby shampoo waiting for you. I honestly don't recall having any trouble with the bald patch. They were careful to leave hair to cover it. Finally, I second selmaS' advise on food. I wasn't allowed to leave the hospital until I ate and I had no desire to eat any of the hospital food ^_^.
I wish you the best of luck! Please be sure to let me know how things go!
-Kulili-
As for your question about risks, I can only tell you what my neurologist told me: this surgery is the tonsillectomy of brain surgeries. The least risky you can get.
Other general info - my hair is like yours, so I was dying to wash it as soon as I could. Be sure to have baby shampoo waiting for you. I honestly don't recall having any trouble with the bald patch. They were careful to leave hair to cover it. Finally, I second selmaS' advise on food. I wasn't allowed to leave the hospital until I ate and I had no desire to eat any of the hospital food ^_^.
I wish you the best of luck! Please be sure to let me know how things go!
-Kulili-
Thank you all, this is encouraging. I am actually very confident in my surgeon. He is the Chiari specialist in his office. My NL referred me to another NS, but he sent me to mine because mine knows Chiari. He seems very knowledgeable. He also let me ask all the questions I had without taking offense, I was warned the NS get cranky when you ask questions. I have been very impressed.
I have had a lot of other testing because we found this while trying to rule out other things. This was not something they were looking for. My MRI was done to look for MS and this is what they found instead. My symptoms are on the moderate side but I have new symptoms, numbness which was a concern to the NS. Also he ordered a second MRI, he called it a CSF study. That one found diminished CSF, I think if it weren't for that he would not be doing the surgery. I don't have the typical Chiari headache (that comes with coughing, sneezing, bearing down)etc... He has been very good about telling me that my symptoms may not go away, though he is confident that I will feel better after the surgery.
My symptoms are chronic fatigue and nothing I have ever tried has fixed that problem, better diet, excersize etc... I remember in high school telling everyone I felt out of shape. Nobody took me seriously because I weighed 110, I couldn't be out of shape. I have constant neck and shoulder pain which I have unsuccessfully had treated by the chiropractor, I thought it was left over from whiplash about 13 years ago or that it was a bad bed or pillow. As I think back on it though, I had the neck pain and tightness before I had my accident, I thought it was my job. I never told my MD about it because I thought they would just give me pain killers and what was the point of that. At the request of the NL I stopped seeing my chiro when I was diagnosed, my Chiro pretty much agreed with that assessment he said that he could not solve the problem only make it worse. Ok back to symptoms. I have ringing in my ears, I have had that since childhood my mother had my ears tested a lot as a result. I have blurred vision but I'm not sure if that is related to the Chiari or time for new contacts, however, they have never been able to completely correct me, I tend to always want an overcorrection. I am dizzy a lot too several years ago I was told I had vertigo and that was the cause of my dizziness, those meds made me sleepy. Several months ago, before my diagnosis, we had an ask a doc night a church. A doctor from my church came and answered any question we had. Someone asked him about dizziness he explained the different types of dizziness and what vertigo was and it was definitely not what I have experienced. There are other things I'm sure that I have just lived with and don't even notice. Some things like the ringing in the ears I have learned to ignore. The fatigue and numbness are the wost for me, followed closely by the dizziness. If I can feel rested in the morning, that would be my dream come true. I also have scoliosis, but that was treated when I was a child and has not had any movement since. I think we caught it early enough.
Selma- My NS told me to be weary of what I read on the internet forums for the reason you gave, only the people with bad experiences come on to rant, the people with good stories don't come on and tell their stories. I have seen good stories on the Wisconsin Chiari institute website, but that is just about their treatment.
Thanks everyone for your insight, it has helped calm my nerves a little. I feel confident that this surgery is the right thing for me. I had actually felt that way since my diagnosis, but I thought I would not have it for years.
My surgery is on Feb 8. I will try to remember to come on here and update everyone after the surgery. What a crazy month it has been, I got my diagnosis at the beginning of December and now I'm having this surgery.
Heidi
I have had a lot of other testing because we found this while trying to rule out other things. This was not something they were looking for. My MRI was done to look for MS and this is what they found instead. My symptoms are on the moderate side but I have new symptoms, numbness which was a concern to the NS. Also he ordered a second MRI, he called it a CSF study. That one found diminished CSF, I think if it weren't for that he would not be doing the surgery. I don't have the typical Chiari headache (that comes with coughing, sneezing, bearing down)etc... He has been very good about telling me that my symptoms may not go away, though he is confident that I will feel better after the surgery.
My symptoms are chronic fatigue and nothing I have ever tried has fixed that problem, better diet, excersize etc... I remember in high school telling everyone I felt out of shape. Nobody took me seriously because I weighed 110, I couldn't be out of shape. I have constant neck and shoulder pain which I have unsuccessfully had treated by the chiropractor, I thought it was left over from whiplash about 13 years ago or that it was a bad bed or pillow. As I think back on it though, I had the neck pain and tightness before I had my accident, I thought it was my job. I never told my MD about it because I thought they would just give me pain killers and what was the point of that. At the request of the NL I stopped seeing my chiro when I was diagnosed, my Chiro pretty much agreed with that assessment he said that he could not solve the problem only make it worse. Ok back to symptoms. I have ringing in my ears, I have had that since childhood my mother had my ears tested a lot as a result. I have blurred vision but I'm not sure if that is related to the Chiari or time for new contacts, however, they have never been able to completely correct me, I tend to always want an overcorrection. I am dizzy a lot too several years ago I was told I had vertigo and that was the cause of my dizziness, those meds made me sleepy. Several months ago, before my diagnosis, we had an ask a doc night a church. A doctor from my church came and answered any question we had. Someone asked him about dizziness he explained the different types of dizziness and what vertigo was and it was definitely not what I have experienced. There are other things I'm sure that I have just lived with and don't even notice. Some things like the ringing in the ears I have learned to ignore. The fatigue and numbness are the wost for me, followed closely by the dizziness. If I can feel rested in the morning, that would be my dream come true. I also have scoliosis, but that was treated when I was a child and has not had any movement since. I think we caught it early enough.
Selma- My NS told me to be weary of what I read on the internet forums for the reason you gave, only the people with bad experiences come on to rant, the people with good stories don't come on and tell their stories. I have seen good stories on the Wisconsin Chiari institute website, but that is just about their treatment.
Thanks everyone for your insight, it has helped calm my nerves a little. I feel confident that this surgery is the right thing for me. I had actually felt that way since my diagnosis, but I thought I would not have it for years.
My surgery is on Feb 8. I will try to remember to come on here and update everyone after the surgery. What a crazy month it has been, I got my diagnosis at the beginning of December and now I'm having this surgery.
Heidi
COMMUNITY LEADER
We do have a few besides myself that did not have set backs...so, it is not all bad stories out there : )
Also we do have a thread for surgery dates, to remind us of when u have surgery....u can ask a friend here to update the thread on ur progress or have a family member send us updates.
I hope u add ur surgery date to that thread.
Just know u r not alone, and u have our support.....so stop and chat netime : )
"selma"
Also we do have a thread for surgery dates, to remind us of when u have surgery....u can ask a friend here to update the thread on ur progress or have a family member send us updates.
I hope u add ur surgery date to that thread.
Just know u r not alone, and u have our support.....so stop and chat netime : )
"selma"
I have not been on in a while but wanted to share my experience since is a positive one. I was dx with Chiari II and had surgery in Dec'08. I have done extremely well and consider it to be one of the best decisions I've ever made. Everyone has different symptoms, My arms
would ache really bad. At 1st it was only when I would overdue things then it got to the point where they hurt all the time. I finally got my dx in May of '08. My surgery was on Tues, went home on Fri., had very little pain and after a 2 or 3 months, arm pain was gone. I know that I am one of the lucky ones but I know there is no cure so I now know my limits. I saw on here that you worry about the hair deal. I was the same way and like you have very fine, oily hair. I got a body wave in mine a couple of weeks before my surgery and it really helped. I was able to wash my hair after I got home. They gave me these big bandages and being careful it didn't get the staples wet. Hope you do well!!!
would ache really bad. At 1st it was only when I would overdue things then it got to the point where they hurt all the time. I finally got my dx in May of '08. My surgery was on Tues, went home on Fri., had very little pain and after a 2 or 3 months, arm pain was gone. I know that I am one of the lucky ones but I know there is no cure so I now know my limits. I saw on here that you worry about the hair deal. I was the same way and like you have very fine, oily hair. I got a body wave in mine a couple of weeks before my surgery and it really helped. I was able to wash my hair after I got home. They gave me these big bandages and being careful it didn't get the staples wet. Hope you do well!!!
I had my surgery November 8th. The initial few days were pretty painful for me, and the meds made me nauseous. I threw up the first three days, and it took four days to get me on my feet due to the nausea. I think mostly it was because they over-medicated me. But, even with all that, I could tell while I was at the hospital, that the pressure in my head was sooo much better! So, bumpy start, but I haven't had any complications, and I am happy I had the surgery.
The hair... mine is very fine and thin, and I was certain I would have to go super short all around. Shockingly, even my wimpy head of hair covers the area. No one would know I had the surgery unless I lifted my hair up to show it off. The washing - with they way I felt in the hospital, I didn't care the first four days! My kids said I looked like the bad guy in the Incredibles movie - it was all frizzed and matted up. My husband tried brushing it out for me, but, well, I wasn't going to be invited to be in any fashion show! I had staples and my husband helped me wash it the day I got home (6 days post-op). We covered up the incision sites really good & I sat in one of those shower chairs and he used the hand-held shower head to wash it. I have my zipperhead pictures on my page if you want to peek.
Oh, and I wore a scarf home from the hospital to cover the cotton candy hair!
Hope this helps. Best of luck to you. Keep us posted!
Lisa
The hair... mine is very fine and thin, and I was certain I would have to go super short all around. Shockingly, even my wimpy head of hair covers the area. No one would know I had the surgery unless I lifted my hair up to show it off. The washing - with they way I felt in the hospital, I didn't care the first four days! My kids said I looked like the bad guy in the Incredibles movie - it was all frizzed and matted up. My husband tried brushing it out for me, but, well, I wasn't going to be invited to be in any fashion show! I had staples and my husband helped me wash it the day I got home (6 days post-op). We covered up the incision sites really good & I sat in one of those shower chairs and he used the hand-held shower head to wash it. I have my zipperhead pictures on my page if you want to peek.
Oh, and I wore a scarf home from the hospital to cover the cotton candy hair!
Hope this helps. Best of luck to you. Keep us posted!
Lisa
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