Chiari 1 malformation

[poppinskw]

I was wondering if there was anyone here that suffers from Chiari 1 malformation and how they coped with it and the pain....

Did you have surgery?

If so were there complications and did it work?

Thanks

Les

 

[goldenviolet]

just giving you a prayer, and blessings.

 

[meh]

My nephew had this. He had surgery about two years ago. His symptoms had just started before the surgery and included headache and fatigue. Also, it contributed to his scoliosis. He recovered from the surgery in under two weeks and hasn't had anymore problems regarding the chiari. Now it's on to back surgery for his spine.

God bless you.

 

[poppinskw]

Thank you for your responses. I do know of someone that spoke to me about the surgery she had for it, at that time she was going back for her third surgery, because the patch they put on the brain kept leaking and they ended up replacing it with a bovine patch, and also removed a small part of the brain that was damaged through all the leaking.

Needless to say I am hesitant about agreeing to brain surgery for this.

meh, thank you for sharing about your nephew, I am so pleased it turned out well for him, Praise God.

Thanks for your help

Blessings

Les

 

[Protinus]

We see and treat these kids daily with surgery and with great outcomes...the sooner it can be diagnosed the better!!

 

[poppinskw]

We see and treat these kids daily with surgery and with great outcomes...the sooner it can be diagnosed the better!!

I am so pleased that it can be diagnosed in kids and treated for them.. It makes it harder when someone is older before it is diagnosed. Apparently its not uncommon for it not to show symptoms until a person is older either... I wish I had been diagnosed younger, but all the symptoms were not there then at least not so severely.

 

[Marveloustobehold]

I was wondering if there was anyone here that suffers from Chiari 1 malformation and how they coped with it and the pain....

Did you have surgery?

If so were there complications and did it work?

Thanks

Les

I had decompression surgery 2001. Stopped horrible symptoms and gave me back my life! I found you by looking up general search for Chiari. I see my neurosurgeon tomorrow about difficulties with flexing my neck bringing on minor symptoms. My brain surgery was easier than my first C-section! The years previous being ill were worse than the years after the surgery.

God Bless He is Marvelous to Behold

Mary

 

[Talie]

I had decompression surgery 2001. Stopped horrible symptoms and gave me back my life! I found you by looking up general search for Chiari.

I just did the same thing

I must say, the person above saying "we do surgery on kids with this daily" suprises me considering it's so rare and there's only one place I know of in the world that does more than a few surgeries a YEAR on ALL AGES - and they only do a few hundred a year on all ages, not just kids ..... sooooo the numbers don't add up

 

[tch4God]

I am an adult who was diagnosed after 20 years of worsening symptoms. I had decompression surgery in January 2006, and was supposed to recover in two weeks. FOUR surgeries, many complications, side effects, 9 months of missed work and 18 trips to the ER followed by as many re-admissions to the hospital, I am about 80% back to normal. Many, many symptoms I had previous to surgery are gone, praise God. I have several new kinds of headaches, and picked up a lot of weight from the steroids that has yet to leave me. But I am getting better every day, God has carried me through this so far, and He can heal me all the way if he wants to. But even if he doesn't, I will praise Him!

I could not say I would or would not have the surgery if I could choose again.

Pray, and trust God, and may he bless you in the mean time!