I was just wondering if anybody had their neurological exam come out fine and still had symptoms from the Chiari. The NS that Kristi seen on Weds said that her exam was fine so that the problems she is having is not related to Chiari. Just looking for some insight on this.
I had the same thing happen about 2 years ago. I had my usual symptoms going out of whack. They were more frequent than usual and it was worrying me. So I went to my NS and he had an MRI and checked me out. He referred me to a NL (first time I've seen one ever. I've always went to my NS since 2003.) The NL performed the entire neuro exam, I was there for about 45 minutes to an hour. Everything came out fine. The only thing we came up with was Topamax. Is she on any medicine? Check the side effects of those. If any of those coincide with any of her current Chiari symptoms, they might be making them overact. With the topamax for me, he had me take my dosage and split it in half. I had to start taking half in the morning and half at night to see if that helped. After awhile, it went back to my normal symptoms. Not hyperactive. So now I'm back to taking my topmax regularly all at once.
Hope that helps.
-Alicia
Thanks Alicia. The only thing she is taking is imatrex for the migranes. I don't think that is the problem but I will check the side affects of it. I am just getting irritated with these doctors saying that her symptoms are not medical and making her feel like she's crazy.
Yes, I passed mine as well. Don't put a lot of stock in that. I think you will find that a lot of us have had this happen when the NL doesn't work with a lot of Chiari patients.
Hi...My experiences with NL's and their exams were frankly useless...It was the NS that went by my MRI and my clinical presentation....as well as what I told him about my symptoms
Yeah definitely check the side effects. I can't take imatrex. I was on that first and that made my shoulders and neck muscles tense up like crazy. (Though it did help my migraines) I just couldn't take the muscle tension.
You will also find that not all doctors think all these things are chiari related. They may or may not be. A lot of us have talked about our similar symptoms and most of us have tried to check them against other things (i.e. medicines, side effects, check ups with doctors, other disorders/conditions we may have) It all depends on your doctor's knowledge of Chiari and also how you personally feel. That might be hard to explain but I'll try. Certain symptoms I can just feel are chiari. Its like a weird connection I can feel between the two. (Is that just me?) The slurred/jumbled speech that comes out sometimes...I know when its chiari or just a mess up. Just like with a migraine or a Chiari headpain. I know what is what. I can feel it. (Not sure if I'm making sense).
Unfortunately there are a lot of symptoms we have to live with. They come and go as they please.
angie2459 said:
Thanks Alicia. The only thing she is taking is imatrex for the migranes. I don't think that is the problem but I will check the side affects of it. I am just getting irritated with these doctors saying that her symptoms are not medical and making her feel like she's crazy.
Alicia,
It all started this summer when she started to get migraines and her eyes would go black. She never passed out but did get dizzy. I had her in the er and they did a cat scan and said that she had a severe sinus infection. She took her meds and still was worse. So I took her back and they did another scan and said that she still had the sinus infection. Gave her stronger antibiotics and referred her to a ens specialist. I took her to the specialist and she looked at the scan and said that she didn't have a sinus infection and we would have to look further into it. Well she got better for awhile so I didn't think anything about it. She was fine til about end of Sept. and she started getting the migraines and blackouts back. i took her to her regular doctor and of course they ran a bunch of tests. Everything came back ok. Then they did the MRI and found the Chiari. Hers is 11 mm. That was on Dec. 16th we found out. She got so bad that as of Dec. 15th she has been out of school. Since then she has had severe neck pain, head pain, back pain, severe fatigue, ringing in her ears, her legs feel rubbery. She also has tingly in her legs. Her back pain started between her shoulder blades and now is in her lower back. I just hope we can figure something out so that she can keep up with school. The doctors seem to think that she doesn't want to go to school and that something is going on at school to where she doesn't want to go.
I always had migraines and headaches. They seem to run in the family. But 2003 they got increasingly worse. I was waking up almost daily with head and neck pain so bad it was making me throw up. There were days I couldn't physically turn my neck. After going to the doctors they put me on migraine meds and that didn't help. Next visit he tried me on another migraine medicine and had tests run. Nothing helped. Then they sent for the MRI. thats when the found it. This was around April when I was finally diagnosed with it. I was missing a lot of school because of the head/neck pain. There were days I'd go in late because after I was up awhile and had thrown up I'd felt better. My surgery was in July so I was out in recovery and everything during the summer. They said I didn't have to start school right away. They all said I would be able to (If I wanted) to start school late or even 2nd semester. I didn't want to fall behind so I made myself go when school rolled around. I still missed quite a few days then too from the pain and recovering.
Does any medicine like tyleonl or ibprophen help for her back pain?
Have you went to other doctors or got a second opinion? What does her NS/NL say?
Alicia,
I'm looking into seeing another doctor. Her regular doctor referred her to a NS. We went and seen her last Weds and she says that the problems are not related to Chiari. But what I have researched it seems like they are. i don't know what to think. she goes for her MRI of her spine on Feb. 6th. In the meantime I am trying to get one of the doctors to send a note to the school so that she can have a teacher come out and help her keep caught up with school. She has been out of school since Dec. 15th. All the doctors say is what is keeping her from going to school. There is no way she can sit at school for 7 hours a day. There is no way and for some reason the doctors can't seem to understand that. They seem to think that something is going on at school or problems that is making her not want to go. i know my daughter and she loves school and is depressed because she can't go and plus softball will be coming up and there is no way she would give that up. Softball is her life. Nothing seems to help her pain. Thanks for talking with me.
I feel like deja vu reading about your daughter. What it seems like you need is a chiari specialist in your area. Someone who is going to focus on the issues she is having and not about the fact that shes missing school. She feels like crap, of course shes going to miss school.
I wish I could be of more help with doctors for you.
I found these listed here: CCI
Michigan
Dr. Satish Krishnamurthy Neurosurgeon with Pediatric Specialty Detroit, MI
Dr. Steven Ham 3901 Beaubien, 2nd Floor Detroit, MI 48442 313-833-4490
No thanks needed for talking :)
Thank you so much for the info. i do feel a little better about some of the things now. -Angie
You're welcome:)