My name is Laura. I was diagnosed in may 2013 with CM1. I have experienced a range of symptom's like numbness and pain in right leg, losing my vision temporarily , Headaches like my head is a balloon, eye pain, eyes skipping and twitching, dizziness , nausea, quick stabbing head aches on the side of my head, vertigo, back pain, neck stiffness, hearing things, forgetfulness ect. recently diagnosed with sleep apnea as well.
I have seen 4 Neurologist so far. I have been told I don't need surgery. Which is good but I still need a good doctor to help me through the symptoms.
I provided a link here from a recent thread that has a lot of replies that apply to you as well, so please read them for a start. James' CM2 is different from you I believe, but most info. is there.
I also think with your symptoms you should consult with a Chiari experienced NS. I also live in Va, so if you need some referrals please let me know. You definitely need to be seen. NL aren't usually very effective diagnosing or treating Chiarians.
I have gone through 100's of pillows...cheap and expensive. Different ones are better at different times, but I am post surgical with extensive C Spine damage. Heat works better for me than cold but that is again because of my situation. Arnica Gel helps with muscle pain and stiffness. I get Arnicare at Walgreen's. It's OTC but incredible. I would also recommend consulting with a good pain mgmt specialist. They are great diagnosticians & do more than just write prescriptions.
Please ask any questions you may have. We understand.
Laura, you sound really symptomatic like my son was and I would highly suggest that you see a Neurosurgeon that specializes in Chiari and not a neurologist. I think that unfortunately you are wasting your time with the neurologists, please consult with a Chiari specialist!
Hi Laura! You and I have the exact same list of symptoms. My NS also does not think that I need surgery right now. I have to see him every 6 months, and see how it goes. I did go to my NS first, but he had me go to a neurologist. He wanted me to have a nerve conduction test, EEG, etc. The neurologist will also help you with meds to alleviate your symptoms. I also go to a spine and wellness center for pain management. They have actually helped me more than my neurologist. I would recommend looking into something like that it is available.
It takes a long time to find the right team of doctors, meds, treatments, surgeries to manage everything. You have to fight for yourself. But don't fight too hard, or they'll think you're crazy! ;-) It's a fine line. And it's not easy. But we are all here for you to help you through this! Hang in there and God bless!
I had many of the same symptoms as you as well only mine are usually on the left side.
I had surgery a week ago.
From what the NS told me (he specializes in Chiari) a lot of your symptoms sound like Chiari and surgery could give you relief. I know you want to be sure, and that is good, but do as the others have said and see someone who knows about Chiari. It remains to be seen of course, but so far the shoulder pain, neck pain and leg pain on my left side are pretty much gone. Not all the leg pain but I have other issues with my feet and that cause me to walk "wrong" and I have been sitting A LOT and that is normal if you sit too much. So anyway, my point is I already notice some changes. :-)
Take your time and find someone who knows what you have and can test for other things that could be the cause as well.
Laura, Glad you are here I agree with everyone that a consultation with a chiari specialist is in order. This doesn’t mean that you will have to have the surgery, but you will be informed by an expert so you can make the best possible decisions for yourself. Your symptoms are not mild, the apnea and eye stuff are substantial.
I struggle with pillows. I have to switch them out every week otherwise it feels like my head is laying on a piece of concrete.
Sorry, last post was about a NS at MW hospital not too far from you. I found him on our rec. docs list under Doctors tab above. See if he offers a sliding scale payment for evaluations if no insurance. Also, check major teaching hospitals or Public hospitals that may have a Resident see you in a clinic for free or near free. Good luck.
I agree with everyone that a consultation with a chiari specialist is in order. This doesn’t mean that you will have to have the surgery, but you will be informed by an expert so you can make the best possible decisions for yourself. Your symptoms are not mild, the apnea and eye stuff are substantial.