everyday living without any support

[orchid29]

I am a 35 year old mother of 2.  I was diagnosed with Arnold Chiari Malformation in December of 2002, that is not operable so I have been told.  I have never been offered any type of treatment or even counseling to be able to cope with the day to day symptoms I have suffered with since I was a child.  This diagnosis went undiagnosed for most of my life.  I do experience about 85% of all the symptoms I do know of that are related to ACM.  Is there anyone who can maybe direct me to something that may help me understand that I am not alone with this condition, just very very misunderstood!!

[Shane99]

Yes, why can you not have the surgery?

While it's true that there is no cure for Chiari, surgery can help A LOT with symptoms.

Find a Chiari specialist. Neurosureon's are better than Neurologists - in my opinion. But go see a different one that told you that yiou couldn't be operated on - unless there's a different reason.

You don't have to suffer through all the issues. Surgery might not fix everything, but it heps tremendously.

Do you also have Syringomyelia?

Generally where do you live? I'm sure we can help you find a Chiari expert.

[youngwife]

Hi, there!  And, I am sorry that you have had to live with these symptoms for so many years.

I am curious, though....why are you not able to have a decompression surgery?

Have you seen a Chiari specialist or just a neurosurgeon?

I'd love to find a doctor for you that could see a way to help you get treatment.  No one should have to live with out hope.

Blessings to you,

Rebecca

[selmaS]

I too have had chiari since birth, just recently dx.......where do u live...I have learned that u must have a Chiari expert any NS will not do an expert will have done 200 chiari surgeries in one yr!!.....this is a very frustrating condition which there is no cure...when was ur last MRI? do u know ur herniation?.....do u know if u have a syrinx?......have u had a CINE MRI?....sorry, but there is so much involved....shane99 has had the surgery and Iam sure he will contact u as well.....please update so we can asnwer ur questions better.
have u gone to the ASAP website? or the Chiari Institute?

Good luck
Godspeed
"selma"