Going for my 2nd NS visit today. Since the last appointment, I have had a thoracic MRI, a nerve conduction study, and an EEG. He should have all of the results from those tests today, I hope.
Our last visit, he did some basic Neuro tests and looked at my other MRI's (brain, lumbar, and cervical). He also diagnosed me with Chiari (7mm). He wanted me to have the thoracic MRI done to check for tethered cord or a syrinx. And he referred me to a Neurologist.
I have been to the NL once with the dr. and once to have an EEG. Our first visit was wonderful. He spent quite a bit of time going through EVERYTHING. He said that he wants to try to make sure that the symptoms aren't caused by something else, and to try to get them under control so that I don't have to have surgery.
My NL put me on Neurontin (headaches, possible epilespy, and nerve pain), Pramipexole (restless legs), Rizatriptan (migraines), and Cambia (migraines), as well as B-12 and Magnesium. Sometimes it seems like the meds are helping, and then other times not so much.
I am getting more and more concerned with my ever-growing list of symptoms. They seem to change or morph into something new everyday. I have become a recluse for the most part. I'm very sensitive to all stimuli. Bright lights, loud noises, annoying sounds, smells, etc. My husband bought me a large pack of earplugs and sunglasses that fit over my glasses. They were the best presents ever! My right leg now twitches and jumps everyday now, anytime I am relaxed. My attention span is that of a 2 year old. I cannot stay on task for anything! I can't remember words, names, or I slur or garble my words. I lose my hearing temporarily in one ear, have ringing noises, or wooshing heartbeat sounds from time to time. I lose my vision temporarily when it is very hot, or anytime I move up and down to quickly. And of course, there are the headaches and migraines. The back of my head is on fire most of the time. I'm sure there are more glorious symptoms, but I can't remember right now.
From what I gather, I need to have a Cine MRI done, correct? I have also read that many of you take Topomax or Propanolol? I want to do everything I can to try to get these symptoms under control. I really would rather not have surgery. Maybe there are not enough positive result stories on here? I have read so many bad ones. Or sometimes it works well for a while and then the symptoms come back? It really scares me, to be honest. I know that there is no miracle cure out there. Once you have Chiari, you will have it for life. I'm 35 years old now. I don't want to give up without a fight!
So, any words of wisdom, suggestions, or what-have-you would be greatly appreciated! Thanks so much!!!