Chiari Malformation and CMT

[Guest guest]

Cheryl,

I too have Chiari Malformation and Charcot Marie Tooth. I thought I was the

only one for a long time. I have not had the decompression surgery because I

am not sure what is Chiari related or CMT related. Email me sometime and we

can talk more.

[Guest guest]

,

Hi, I am glad I am not alone in have Chiari, I have read data from the Americam

Syringomelia Alliance Project that CMT is assocaiated with Chiari. I sent for

data in the mail. Alot of bone disorders seem to be related with it. I have

had the surgery and did well for about a year. Then the weakness set again, the

buzz in my ears and so on.

I went to the Chiari Center in NY who are supposed to be the best in the nation.

They found that the compression on the brain all those years destroyed part of

the pituatary function, so I have to take many hormones including steriods all

my life. I do not know whether I tried to do to much, but after some work I did

the CMT came on hard, although I have always has weakness in the right leg and

upper body.

Surgery did correct my low blood pressure, stop the headaches and many of the

other symptoms. I can sleep now I do not have that compete numbness on one side

of my body, the brain fog is gone, my memory is much better and much much more.

But know that I have CMT having my neck muscles cut makes it all the harder,due

to the surgery weaking that area. I do not know if I would have the surgery

again had I known I had CMT.

Write if you can and tell me your symptoms form Chiari, and how you cope with

it.

Cheryl

[Guest guest]

Hi Cheryl and Chuck,

Can you send me the info you found on Chiari and CMT? I never thought they

were related but since alot of the symptoms overlap, I was recommended against

the surgery.

Someone else asked what decompression surgery was. Decompression

surgery is performed on Chiari patients and not for CMT. Chiari Malformation is

when the cerebellum is herniated into the spinal column. During the surgery

part of the skull is removed and the Dura layer of the brain is cut and a patch

is put over it then the skull is replaced. I didn't have the surgery because

there is such similarities between Chiari and CMT that it may not help and who

wants brain surgery if it may not help. The surgery is performed by a

neurosurgeon and you will be in ICU for a time before moved to another room.

If anyone has anymore questions please email me.

[Guest guest]

Hi,, What is Chiari? You guys are so helpful... thanks.. Elaine