I have read where several of you have had a 2nd surgery what is the reason for this?
The reason for this is is in just over 6 months month post op, and still suffering from headaches from headaches though they are not as severe as pre-surgery but pre-surgery they were only severe for the last 3 months before decompression. Also I have developed about 60- 75% of the classic Chiari symptoms that I really didn't have a year ago.
I am also 6 months post op and have more symtoms that I did before. I also have headaches but they are not as severe as before surgery (not yet). I, like you, did not have these other symptoms before. I think my problem is that my dura wasn't opened during surgery. They did do an MRI though and they say that things look "good". Whatever that is supposed to mean. I am hoping to go and get copys of my MRIs next week though. I am really hoping that I don't need a second surgery but like everyone else. We all know that it may not work when we go through it. Doctors like to leave us with all these hopes but by reading blogs and talking with others about the situation, I know better than that! I would love to see a specialist but my insurance is not accepted by most. My husband is in the process of switching jobs so that in the next year or so I can have better insurance and see who I need to but the waiting sucks! Good luck to you my friend and please keep me posted on what happens with you.
Crystal
Very interested in that answer myself, have to admit though the answer worries me slightly...lol
Good question! I was wondering the same thing. I had Decompression surgery in December. They opened the dura, shrunk the tonsils and did a laminectomy. I had everything done. Lol and I still have severe symptoms that reappeared a few weeks after surgery. My post-op MRI looked "normal." I have been reading though, that some people can get scar tissue build up that blocks CSF flow. I had a lot of adhesions removed during surgery. My NL said the scarring looked like a huge spider web. Some of us Chiarians have symptoms returning post op. Wonder if it is just from the damage that occurred before sugery or if there are more issues.
Just because I'm wondering. Did they put a titanium plate in where they removed bone? I'm not sure if most NS do this. I have read that it helps give the muscle something more to attach to.
My local NS who was 100% sure the surgery would get rid of my headaches didn't want to open the dura. I am leary of any Dr who says things like 100%.
Diana
Lily had to have her second surgery because in her first they did not remove her dura and when she healed from her first surgery her scar tissue formed strange and ended up piling up on her dura to the point that it became worse than before she had her surgery. So they went in and removed the scar tissue and the dura - she is now 8 months post op and while she still has headaches on some days she is a heck of a lot better than before.
Susan,
What kind of patch did they use? How long after your surgery was it when you started noticing symptoms get worse or change? I am going through a rough patch and I feel that something just isn't right. Not sure what to do. I see my NL again on the 20th but the NS doesn't feel that she needs to see me. Wait and see I guess...
Susan J said:
My patch failed and I developed a psuedomeningocele, obstructive hydrocephelus, and csf leak. My second surgery put in a new patch.
Beeba
Where are the Videos from Dr Ellebogen ?
I have had scar tissue build up and blocked my CSF at C2 and my patch is loose. I am schedualed for a few tests and then hopefully have the revision this summer. I'm really scared because my recovery the first time in 2001 was really rough but my new surgeon is amazing and really knows about Chiari. She hasn't given me any promises but she hopeful I will see improvements. I'll take anything at this point.
Nicolee,
I saw my NS the other day and she said they have a new MRI that will show the scar tissue. I don't know if it has a special name or if it's just a higher resolution MRI but she was very excited about using it to see exactly where and how much scar tissue has built up. Maybe you could ask your doctor about it. If I find out more info I will let you know.
Wendy
nicolee said:
Good question! I was wondering the same thing. I had Decompression surgery in December. They opened the dura, shrunk the tonsils and did a laminectomy. I had everything done. Lol and I still have severe symptoms that reappeared a few weeks after surgery. My post-op MRI looked "normal." I have been reading though, that some people can get scar tissue build up that blocks CSF flow. I had a lot of adhesions removed during surgery. My NL said the scarring looked like a huge spider web. Some of us Chiarians have symptoms returning post op. Wonder if it is just from the damage that occurred before sugery or if there are more issues.
Beeba said:
I say you go see another ns then. A Nl barely even seem to believe this exists. There is a nl in my area who was known as a god - funny because his last name is Moses. I saw him on the day he retired. I was his last patient after practicing for about a hundred years. He walked into my room the night before my surgery and said chiari is nothing and if you let them do surgery all you will do is buy them another Bentley and you will be worse than you are now. But he also couldn't turn off my tv with the oldest precussion hammer you have ever seen. Now I shouldn't have used the dr I used but I had no CSF to half my brain and I was extremely sick. I definitely needed the surgery. I was seeing another well respected Nl to treat my pressure ha's. After surgery just recently Finally I realized this was a waste of time and he thought everything was fine anyway. Had second surgery two weeks later. I have lost all faith in them. These are heads of neurology at prominent hospitals. They never saw that the dura wasn't opened? No me a mom with a phlebotomy certificate
and the trend sucks
Beeba said:
I think I see a trend.