I have been recently diagnosed with ACM 1. I have some wierd symptoms that my neurologist believes are not related to my chiari. The symptoms are: dry and blurry feeling in right eye, cramping feeling in right arm and leg, a pulling (tingling) feeling on right side of face, and muscle knots on one side of body. I really don't know if the muscle knots are causing all of these problems or not. The one thing that I do not have is the headache. I get a headache every once in a while but it is a normal headache, not a crushing feeling in the back fo the head headache. If anyone has any input, I would really appreciate it.
headaches are the biggest complaint with chiari but your syptoms can definatly be related not all neurologists are fammiliar with this. if you have not come across it in your searche there is an online support group that is very helpful and can give you alot of answers, they helped me alot
Where do you live and how old are you? Did they do an MRI to find the Chiari? Have they sujected anything as to having the decompression surgery or how big is it. With the syptoms that you have could actually be come from where it is so big that is pressing on some of the nerves and muscles and things that are in and around you skull and going down you spine. But there is a Arnold Chiari instiute in New York that if you go to google and just type in Arnold Chiari then pull up the info on all of the different places they have this place and that is all that they specialize in. I have twins boys that are now 6 and 1/2yrs old now and one of my boys is PDDwhich is a mild form of autism. He started have servere headache when he was 3yrs old and stuff and he wasn't really old enough to know what a headache was and all the doctor kept tell me it was allergies or just something to do with some of his illnesses that he has had off and on since birth. But finally he was well and not sick and I took him and told them something wasn't right and got them to do a MRI and that is when that found the Chiari TypeII. Took him to a Neuro here in Knoxville,TN and then I took him to a Neuro-Surgergeon in Nashville,Tn a Dr.Tulipan which is wonderful, great at Childrens Vanderbilt and he did decompression surgery Nov.2004 and things went great. Stay in hospital for 3-4days, can't hardly see his scar at the base of his neck and is doing great now. After a almost 2yrs. he discharged him about 9-10months ago and we have not had any problems or nothing. Everything has heeled great and everything. So if you have any questions I'll try to help anyone in anyway I can. GOOD LUCK WITH WHOEVER THIS MIGHT HELP!!! GOD BLESS.
My ACM 1 is 6mm. My neurosurgeon (who I was referred to by Cleveland Clinic)said that he can clearly see that there is room around my tonsils and it is relatively clear that my CSF is flowing normally. To look at my MRI, I can see that there is room around everything and the tonsils are not horribly distorted. My neurosurgeon said that I could have the surgery if a wanted to but he does not recommend it because he does not believe that my problems are chiari related. It is just confusing because of the one sided problems.
It is interesting to look at all the ACM websites and see the lists of symptoms. They could really apply to so many things. The more websites you go to, the more symptoms you can find. I actually found one website that said dry lips could be caused by ACM 1. OK, the weather can cause that too. I am going to stop looking at these chiari websites and trust my doctor. After all, he is the one who went ot medical school. This website is different because it offers support to others as opposed to scaring us all more than we already are. Thanks for the responses.
You'd help yourself by getting the RIGHT answers at the Chiari Institute, cut and paste address above. They do more decompression surgeries than anyone else in the world.
Doctors are still stuck on the old school radiologic definitions of Chiari Malformation, so they miss lots of seemingly odd symptoms.
THere are videos at this website that will help you immensely. Unless your neurologist specializes in ACM 1 AND understands all the updated info as of 2006, don't just sit by and hope your doc is right.
I have a very minimal herniation and have terrible head pains, chronic tinnitus, fatigue, upper extremity weakness, vertigo, etc...the list of symptoms is long and sometimes seems to be almost 'cyclical', but very real. Please don't give up on your research!
I have also been recently diagnosed w/ chiari Type 1 w/ 4mm herniation. I am having severe headaches and R sided weakness any numbness w/ severe dizziness for 13 years. I was told by mult. doctors that I have vertigo and I received a prescription for meclizine and to go home. Now I'm seeing a neurologist that is telling that none of these symptoms are related to my chiari malformation and that I just have migraines. Every time I ask him about the numbness and weakness he just kind of skips over that. So, I went back to my family practice MD and she had me referred to a neurosurgeon for a second opinion. Beleive me, I know what you're going through.
Well I'm back...It's been almost 4 years since my surgery, decompression with removal of C1 and partial of C2 with fusion to C3. I think that's how it goes :) I've been getting the "Don't make me laugh" headaches again. Coughing, straining and so on. But the frustration comes in the memory lapses. I've always been one good with vocabulary but notice lapses when speaking. The words get lost, can't spell like I used to. I'm only 44 , realize age makes a difference but hate to think it's the "old timer's sitting in" as my daughter calls it. I've been having right facial twitching and pulling for the past 6-8 months. I noticed that I am getting exhausted with an average day of activity. Just frustrat
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