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!  :)

[na1960]

My SIL was just diagnosed with Chiari, yesterday, 10/30/08.
They have referred her to a neurosurgeon immediately because the condition is much worse than they expected. She has gone for follow-up MRIs tonight specifically on the surgeon's instructions.

My question to all of you.....
We are in the Chicago area.....you mentioned a well known surgeon in this area.
Would you please forward the name?

[cdavis1963]

Thanks for your comments. You're right, I need to take care of myself as well. After Brier's surgery it will be time for my check up and I definitely will folllow through.

cdavis1963

[cdavis1963]

Good luck with your surgery on Tuesday, I hope everything goes okay. We will be
having surgery Nov. 12 at Vandy for Brier. I was a little disappointed to hear from Dr.
Tullipan that NO ONE ever gets 100% success with this surgery. He says at best we can hope for 80-90% relief. I am not satisfied with those odds. I talked to St. Louis
Childrens Hospital yesterday and they said the same thing. If God wants my child 100% then he will be and I have to keep praying and believing that . Good luck and I'll check on you later.

cdavis1963

[Lovemygirls2]

I read your post to Shane99 and I wanted to let you know that I too go to Dr. Hampf and will be having surgery on Tuesday. I too am very happy with Dr. Hampf.  I am so sorry your son is going through so much!  I can't imagine a little one having as much pain as we have!  I know your son is your top priority, but like Shane said- you have to take care of yourself too so you can take care of him.  I know- when you have children- they are who you worry about.  When I found out I had Chiari- then I found out there was a 14% chance my children could have it too- I began instantly thinking about them. I just wanted you to know that we are practically neighbors when considering the world of Chiari- I live in McKenzie Tennessee about an hour from Jackson.  I know Dyersburg very well- I used to live between Trenton and Dyersburg when I first got married 11 years ago.  I will certainly be praying for you and your son!  If you need anything or have any other specific prayer needs just let me know!  Good luck with your appointment Monday!

[Shane99]

Don't put off the surgery too long. If you are having spine issues, then you have syringomyelia and that can lead to paralysis pretty quickly. Don't risk paralysis to yourself while concerning yourself with with your child. It's not reversible! And that can't help anyone.

My doctor is Dr. Carl Hampf at Baptist. He is a Chiari Specialist and I'm very happy with him. Unfortunately, he doesn't operate on children or I would recommend him. But you might consider him for your surgery.  

[concernedmom2008CM]

Hello, Im new on here, But have a few questions, My son had decompression surgery in 2008 at 8 yrs old. His recovery was crazy, and not the normal.. many issues a lot of pain and it took at least a year for recovery, It was apparently very unusual and dr said he had never had anyone with problems like him…Anyway he's now 18 started having headaches, I got him in and today received news he has chiara again and now has a syrnix,  We meet with dr the 24th (he's out of the country doing seminar)  Question is everything i see says it shouldn't reoccur? wondering if this is common? did our surgeon make a mistake? and IF and since theres now a syrnix does that mean DEF surgery ail be required???

[selmaS]

Hi and welcome to the Chiari forum.

There are a few things to address.....one Chiari does not go away because someone had surgery....Chiari is a malformation of the skull making the area too small to hold the cerebral tonsils, surgery creates more room to allow CSF to flow.
Since your son has a syrinx, it is possible that his CSF flow was obstructed.

Next what type of surgery did he have...many times Drs do a less invasive type of surgery on children...they do not open the dura and any relief tends to be temporary.

Some with Chiari have had multiple surgeries, many times it is a related condition that can affect the outcome of the surgery.

Was your son checked for related conditions?

Not sure what is meant by DEF surgery?

[cdavis1963]

Hey Shane,

Thanks for responding.He is in the book for being the first NS to do brain surgery on a
21 week term baby still in the womb. He implanted a shunt in the baby's brain and has
done many more since then. I am worried that my son does have a syrinx since he has
deteriated so rapidly, his last MRI was 6 months ago. That's one of my questions for Monday. I have really studied alot about chiari in the last year since I was diagnosed and especially now with Brier. It really affects children differently than adults. Yes, I do have lots of neck and spine problems and I am bothered alot by my chiari.I was told to just wait it out as long as I could and have an MRI every year to look for changes. Some
days are really tough. Right now I have to focus on Brier. Who and where is your doc?

Cdavis1963