Arnold Chiari malformation

[kulkarnidhan]

My Mom was operated for Arnold Chiari Malformation on 14th Feb. The immediate results were good. But at home after the discharge she had difficulty in swallowing and hence she was readmitted to the hospital after 2 weeks ... she started having a difficulty in breathing and hence a Tracheotomy was done and also a endoscopy and now a tube is put into her stomach ..She still complains of headache and now the docs suspect there is fluid in her head after the CT SCan . Today she has temparature. Due to no movements of the body her legs have swollen. Can somebody help please?

[Tootsie]

hi.....im so sorry for what u & ur mum are going through, i know it is worrying.

I cant help u as i know nothing about it.

Things online are very quiet at the min but more will come online later.

Im sure someone will know something & help u if they can.

Hang in there !

Regards tootsie

Hi,

I'm sorry to hear about your mom. I was diagnosed with ACM in December of 2006 and had decompression surgery in Jan 2007. I also had a lot of complications and had to have several surgeries to correct the complications- the 1% chance of infection and the 2-5% of a CSF leak both affected me in addition to hydrocefelus. I spent 5 months in and out of the hospital but I must admit it was worth it. Although things are not perfect, and because there is no cure for ACM I have learned to live with it and my quality of life is so much better because I had the surgery. I'm only 28 so I have a lot of living to do, I was quickly spirling down and potentially facing paralysis and now I'm back to work full time, and getting involved in raising awarness for ACM and fundraising. Below are a few wonderfull websites that will not only teach you about ACM but give you resources...

I had trouble registering on the site- but wanted to respond to your message as soon as possible...I'll try again later...so please if you have any other questions post!! I'd be more than happy to answer...

I hope your mom is doing better!

http://asap.org/

http://www.conquerchiari.org/index.htm

http://www.pressenter.com/~wacma/

http://www.wishesandrainbows.org/

Agnes

Originally Posted by kulkarnidhan

My Mom was operated for Arnold Chiari Malformation on 14th Feb. The immediate results were good. But at home after the discharge she had difficulty in swallowing and hence she was readmitted to the hospital after 2 weeks ... she started having a difficulty in breathing and hence a Tracheotomy was done and also a endoscopy and now a tube is put into her stomach ..She still complains of headache and now the docs suspect there is fluid in her head after the CT SCan . Today she has temparature. Due to no movements of the body her legs have swollen. Can somebody help please?

I havent been thru that much but i do have acm i have sever migranes to the point of not being able to function. The problem I have is a surgeon who dosnt want to do surgery. I hope things get better for your mom I feel for you and I can understand what you are going thru.You are in my prayers.

[kattsqueen]

Originally Posted by kulkarnidhan

My Mom was operated for Arnold Chiari Malformation on 14th Feb. The immediate results were good. But at home after the discharge she had difficulty in swallowing and hence she was readmitted to the hospital after 2 weeks ... she started having a difficulty in breathing and hence a Tracheotomy was done and also a endoscopy and now a tube is put into her stomach ..She still complains of headache and now the docs suspect there is fluid in her head after the CT SCan . Today she has temparature. Due to no movements of the body her legs have swollen. Can somebody help please?

ask your doctor to check her for potassium ion channelopathy which can be aggravated by surgery and the use of repolarizing anesthetics..i have andersen tawil and know of what i speak,, also potassium channelopathiess can affect intercranial hypertension. god bless you hope this helps!!