Multiple surgeries for Chiari?? Even years later??

[Lovemygirls2]

I am scheduled to have decompression surgery for my Chiari on October 28- 3 weeks from Tuesday.  I am beginning to get a little nervous about it.  My question is this?  Are there alot of people out there who have had the decompression surgery and then maybe years down the road start to have all the symptoms all over again?  Seems like that is a common theme lately on the forum.  Just curious as to how many people out there have had either multiple surgeries for their Chiari or years later after the surgery begin to have problems again.  My husband and I were just talking last night after reading some of the posts- he said it would really stink to have to have this surgery every so many years!  I thought yeah it would!  I would also love to hear from anyone who has had the decompression surgery once- and they are still doing fine years later.  I just kind of like to know what to expect!  If possible!  :)

[Shane99]

Hello, I'm sorry to hear about how much pain and problems your son is having. Hopefully the surgery can help. Have they prescribed any medication to help control the pain?

Is your son diagnosed with Chiari 1 or 2 (or worse)? Yeah, 12mm is big, especially in a small child. Does he have syringomyelia? Have they mentioned anything about syrinx or a fluid build up in his spine? It sounds like he does judging from the symptoms.

I can't really say much about Dr. Tulipan. I don't now much about him other than him being a Professor of Neurological Surgery at Vanderbilt. I wasn't aware he was considered a Chiari expert, but I don't claim to know all of them. I would guess his credentials are enough to be considered that, seeing as he teaches neurological surgery and specializes in pediatrics. He's in the Guiness Book of World Records? For what?

As for question, what I can think of right off;
*If you aren't sure, find out what type Chiari he has (Chiari I - IV).
*Ask about syringomyelia - does he have any syrinx, if so how many? And if he does, are they going to need to operate for that also?
*Find out if he has other spine issues like spina bifida.
*You mentioned that his procedure was different. Find out what he does and how it differs.

Be sure to take a notebook with you and write down what he tells you, don't rely on your memory because you're most likely going to be overwhelmed while talking to him. Also, go ahead and write down beforehand whatever questions you can think of, that way you don't forget while talking to him. Make him explain to your satisfaction - but keep in mind, you might not be able to understand completely no matter how much he explains, he does have over 8 years of advanced education, plus decades of experiance. Get him to spell any unfamiliar word, that way you can look it up later and/or come here and ask us questions :).

Are you basically aware of what Chiari is and what the operations usually do? You mentioned having Chiari yourself. How long have you known about it and are you having any major issues? 8mm, is a pretty good sized herniation. That's large enough to really start effecting the spine.

Good luck and if you need more info, let me know and I'll see what I can do.

[cdavis1963]

Hi Shane,

My 3 year old son is scheduled for chiari surgery Nov. 12th at Vanderbilt with
Dr. Tullipan.He has been having symptoms since he was 7 months old. I finally got
him to a doc in May that would listen to me and understand that I am not just an
overprotective mother. His symptoms are really bad. His herniation is 12mm. He screams with his head pain atleast 8 times a day which lasts anywhere from 2min to over an hour. These are followed by bouts of vomiting which in turn just sends us into
another round of pain. He complains with his hands burning and he can't even play like
a normal child without it causing pain.He doesn't sleep good at night. He also has the gag reflux and choking which causes more head pain. We have no choice but do the surgery at this time. With all this being said, you are from Tenn. as well as us. We're
from Dyersburg. It sounds like you have learned alot through your own experience. We have an appt on Oct 27 with Tullipan for final questions and concerns. What things should I ask that maybe I haven't thought of and do you know anything  about him? He is
in the guiness book of records for other things and says he is a chiari expert and that his
procedure is different than other surgeons. Send me any info you have and please pray for Brier. Chiari has changed our lives, I can't work anymore and we're having to sell our house not even to mention that there is no normal routine anymore. I just want him fixed
right the first time. I forget to mention. I also have chiari with herniation of 8mm but I don't have time to focus on mine right now.

Cdavis1963

[Lovemygirls2]

I appreciate the prayers!  I agree with Shane about being watchful and aware of your symptoms.  You don't want it to get as bad as Shane's was!  Today was another one of those days for me!  As I was trying to teach 5th graders- I was thinking how I was so thankful my surgery was Tuesday- I just don't know that I could work much longer if surgery wasn't a short time away!  So- my prayer for you is that you will know when the time is right!  I hope we can get together sometime- I told Shane it would be our own support group!  Good luck!  

[sissy114]

Correction, Don't know where i got the 27th.  But know that my prayers are with you.
Shane said he would keep me posted. Again, wish you the best!!

[Shane99]

Sorry we weren't able to meet the other day. When do you think you may be coming back into Nashville?

I think the reason that so many people on these boards seem to have problems can be explained as, this is a board basically for people having issues with Chiari. If someone has the operation and gets all better - they don't come back to the boards. :)

As far as you having the surgery; I know that the whole idea of having your brain operated on is daunting...and very scary, but I think Lovemygirls and Dr Hampf are right, you'll know the time. The problem is, the time may be when you are in so much pain or having so many problem that you can't get around and you'll NEED surgery.

But if I might offer a bit of advice; if you start having a noticable drop in health or rise in pain, schedule the surgery as soon as you can. This can sneak up on you and we all know how slow the medical field can be. If you wait too long, you will be in a lot of pain and at risk for damages to your brain and spine.

I'm having problems from my Chiari after the surgery, but mine was caught late. My herniation was at 20mm the first time I ever hard the word "chiari". I'm still glad I had the surgery, because it could have been a LOT worse!

My wife and I were discussing how, here six months later, we're very blàse about the concept of brain surgery. It's just a thing that happened, not the shock we had when we found out I would have to go through it.

You'll be okay.

[sissy114]

I will be thinking of you all day on the 27th. I'll pray that everything goes well for you. My main concern is that so many people on this forum has had to go back for more surgeries, mostly for leaks. I don't know if they had a specialist, but Dr. Hampf said
that it was a very small percentage that had leaks. Again I am not sure that my symtoms
are bad enough to go through the surgery. I guess I will just pray about it and hopefully
make the right choice. While I was at Dr. Hampf's office I kept wondering if you were still
there, maybe one day you, Shane and I might meet. Who Knows?

                                                                                         Best of Luck!!!!
                                                                                         sissy114