First time poster with CM

Hello all. I wanted to ask some questions to everyone here with CM. I was diagnosed when I was 16 with a 13mm herniation, which was causing me seizures, and had to see a neurosurgeon. Being young and not knowing I opted not to have the surgery. I feel that now 9 years later my symptoms have gotten much worse. Aside from having petite mal seizures my symptoms include, ringing in my ears, a ton of head, neck, and shoulder pain, when I cough I come close to passing out. If I pass out, everything goes black, all my muscles tingle, I lose muscle control, and then usually seize up. I have been really depressed about alot of stuff too. the worst part is the coughing. If I cough even a little bit my head feels like its going to explode. I havn't had and MRI or anything since I was diagnosed. Should I go to the ER and see about having an MRI, or what should I do? My neurologist isn't a very good doctor. When he diagnosed me we only had 3 appointments before he sent me to see the neurosurgeon, but thats it. No treatment since diagnosis, and now I don't even know where to start. Any help anyone could offer would be great! Also is it normal to have such powerful headaches after coughing that you pass out? It happens to me quite alot, and I worry the most about that.

Joker, we are glad you are here. The coughing headache is classic Chiari. They call it a valsalva maneuver headache. Most of us have had poor luck with neurologists, they are working with an outdated education on Chiari, and unfortunately a lot neurosurgeons too. If I were you I would not waste any time going through an NL, if your insurance permits just go straight to a Chiari specialized surgeon. Most of the surgeons will require looking at an MRI or at least getting a copy of the report before allowing you make an appointment, after that they will order their own Mris and tests. Do you have a copy of the MRI or the report? It is also important to be familiar and informed about the other medical issues that come along with Chiari for a lot patients. These can affect what type of surgery is required to fix the Chiari and related issues. Not all neurosurgeons are aware of this.

Look at Elhers Danlos syndrome, or hypermobility syndrome: this can present with very few symptoms but can cause cranial cervical instability- this needs intervention and prevent the relief of Chiari symptoms after decompression.

Dysautonomia: can cause some of the same symptoms of Chiari, it’s common with brain stem injuries and compression, and might require meds to regulate.

Also, here is a link to a list if neurosurgeons who are recommended by the other members here. Their name is listed for how many times they have been recommended.