Hey everyone,
Okay so I was wondering if anyone has had ACM and had it get worse. I've talked to a couple people and they have said that it is possible but I want to get a couple more opinions.

Thanks a bunch :)
Emily

Hi. I have ACM1 and was decompressed 3/1/06. I at that point had basically no CSF flow and was feeling horrible. I never had the headache that most people get with it, but very bad dizziness, sensitivity to light, sound and touch, and a lot of pain, burning, tingling and atrophy with my right arm and tingling of my right leg. Decompression surgery stops the progression of symptoms, it does not "cure" it. Some people's symptoms are gone after surgery. I was not one of those lucky ones. My dizziness remains and tingling/burning of my right arm/leg, which I take Neurontin for. I take Ativan to help control the dizziness. Have you been decompressed?

Sue

No, I haven't been decompressed. A year ago when I was diagnosed they decided the symptoms weren't bad enough to go through with the surgery but I have an appointment on Friday {the 29 of June} with one of the top Chiari doctors in my area so hopefully I get some answers then.

i think i might have acm. i get really bad headaches. my head feel numb alot. i am lightheaded . unbalanced dizziness, senitive to lights , cant watch tv, evan being on the computer makes me feel more dizzy and i feel like i am going to pass out. my neck hurts alot, my ears hurt, and my face goes numb on me. my vision gets bad sometimes. i cant lay on the side of my head because i get dizzy worse. and if i lay on the back of my head too long it feels numb and i get a real bad headache. can someone tell me if these are the symptoms for acm

My brother was diagnosed with this, I am not sure exactly what it is can some one fill me in?

I was recently diagnosed too. The doctor called me and told me that it was severe. I was so scared, but after reading a lot about it on the internet, I am not as scared anymore. I feel confident that the effects can be adequitely treated.

I wish you the best and I am on this journey with you.

Terri

I have ACM. I had the surgery in '98 but I still have it. Unfortuanallly they wern't able to do my whole surgery because I nearly bled to death. I often get dizzy but I can say the head aches arn't qute as bad. Before the surgery mine was only a 3 cm drop but my fluid was caught between my brain and my syrinx so it caused a great deal of problems. I had 14 seizures in one week and I was in a wheel chair in less than 3 months. They told us that if they didn't do surgery when they did I would have died. I had a great surgeon and I would honestly say he is the best. Be careful what kind of surgery you have to hlep the situation--some are out there and will damage you more than help--make sure you cross all your paths before deciding.
Good luck.

Sorry, I said 3 cm I meant to say 3mms.

I have it, I just know it. I don't know how to go about getting it diag. I did have a head/neck mri over 2-3 years ago... He said (my neuro) I have had a neck injury that my c3 disc is pushed into the spinal column. He saw that my brain looked like it wanted to go into the spinal column, but really comment on it too much... Why I wonder? He did refer me to a Neruosurgeon, but that NS was sooo rude and dismissed me on the spot... I realize now that I've got two problems... Chiara and CSF. Any suggestions on how to talk to my doc. about this for a ref. to a neuro. once again.... I've had so many sysmptoms for years.. first weakness, now sensitivity to noise, touch, light... severe..., loss of bowels on three different occasions thank goodness there was a bathroom near by. Any one out there got any ideas as to what to do or say>?

My sister suffered with Chiari for a year before diagnosed. Her ear nose and throat doctor knew exactly that she had it. She had surgery and hasn't had one problem since. She was in bad shape before surgery. Headaches, dizzy, legs going numb, couldn't hardly make it through the day. The surgery is a lifesaver for most.

You can go anywhere and find dr's that deal with primarily Chiari. Around me if you just call the neuro offices they'll either say what? or yes. Online just type in Chiari and I'm sure you can find them in your area. Just a thought.

It took them a year to diagnose me. I would talk to your Doctor and have him schedule another MRI on the brain. I finally had my surgery about three and a half years ago and have had no problems since. I was completly cured by surgery. I had horrible headaches, dizziness, numbing in my hands and legs, had trougle swallowing and would almost pass out for no apparent reason. I could not cough, if I did, I went down and the pain was horrific. It was the worst pain that I have every had in my life, I truly thought I was dying. There is hope, Good Luck!!

Your brain is sliding down your spinal column and keeping your spinal fluids from flowing properly. I have the surgery about 3 1/2 years ago and am sympton free, I have had no problems since then, praise God!!

yes, it continues to get worse and worse. I had surgery about three and 1/2 years ago