I'm sorry if this comes out lengthy. It's a long story.
I'm 23. I've been on a chiari roller coaster for almost a year and a half. I was originally diagnosed incidentally, I have lupus and my rheumatologist did an MRI to look for lesions, which there were none, but they found the chiari. The interesting part is I had read about chiari about 6 months before, just thought the name was interesting and had heard of it in pain support groups from time to time, and thought, "hey that sounds like me." Getting that initial diagnosis was not surprising to me at all. My headaches had gradually gotten worse over the years, so much so that I had to give up my college major relating to computers because it became too painful to sit at one. I had always just thought I was a 'headache person' and when I told my doctors about my headaches, it was always overshadowed by the lupus and just thought to be regular headaches that go with it.
Along with the Lupus I also have adrenal insufficiency (Addison's disease) which was my first diagnosis. Once I finally got that diagnosis it was easy to just blame all my symptoms on it, so I didn't do more investigating until about 4-5 years later. At that time though, my pain was still pretty manageable. I was pretty tired but once I got the medication balance right I started to have more energy.
I got the Lupus diagnosis in 2012. They initially told me for a year that I had fibromylagia (I now don't believe in fibro as a diagnosis), until my toes were basically in full neuropathy mode. I'm now on an IV treatment for that, and some symptoms have been alleviated, but there are some other symptoms that don't seem to be leaving anytime soon.
I've seen a neurologist, a Neurosurgeon who is not a chiari specialist, and a neurosurgeon who is(batzdorf at ucla). The first two both confirmed the diagnosis and the neurologist talked about just managing symptoms. The non-specialist told me to have him do the surgery when I get tired of the symptoms, and after a few more MRIs the chiari specialist told me I don't have chiari at all.
I am herniated at 6mm. I know size doesn't matter, symptoms do. I do not have CSF blockage according to a CINE, and I don't have increased intracranial pressure or hypertension. I do have a pocket of fluid in my c-spine, which was determined to be hydromyelia and not a syrinx by the specialist. He says that low tonsils don't mean chiari.
The specialist's explanation for my symptoms is that I have a long thin neck and weak neck muscles, and that I need to do isometric exercises.
My symptoms that I believe could be chiari and not my other issues are--daily headaches, A string of monthly severe headaches, neck pain/spasms/stiffness, upper back spasms, electric-shock like pain in my neck that goes into my back, heart palpitations, chills and hot flashes, balance issues, weakness, tingling/numbness/cold hands and feet. Head pain when I stand up too fast, cough, laugh, sneeze, talk to loud. Frequent trouble swallowing and some GI issues.
Because of the specialists findings, I am investigating other causes for these neuro-type symptoms. Since I have lupus, I want to be monitored by a neurologist for Multiple sclerosis. I seem to have quite a few of the symtoms of MS and already having lupus raises my risk for other autoimmune disorders. I am terribly sensitive to heat, and that could be any number of things, but is very characteristic of MS. I fumble with things a lot. I drop things. I lose my grip. I've played the guitar for 10 years but still can't seem to get my fingers to do what I want them to do. I know the skill is in my head but it never seems to travel down to my hands. My hands lock up quite like dystonia, but that's a whole other thing (also can be related to MS)
I have recently been inspired by facebook support groups to keep persuing the chiari. So far the response to my issue has been that I could still have brain stem compression, and that diagnosis should be based on neurological symptoms and not MRIs. But I will also get screened for MS. I want to cover all the bases. But the specialists findings just don't make sense to me. What are the chances of me reading about Chiari, thinking it sounds like my issue, it being found on an MRI 6 months later, followed by a pocket of fluid in my c-spine, having a lot of the symptoms, and then having the specialist finally tell me in the end I don't have it? I was mentally preparing myself for a surgeon to be opening up my head for a whole year. When the specialist told me I don't have chiari, I felt like I got hit by a bus. Of all the things I thought he would say, that definitely was never one I imagined.
My current problem is that I'm in Southern California. Anyone in this area that knows anything about chiari has been taught by the specialist (Batzdorf) that I went to see. I feel like if I went to see another Chiari NS that he would just tell me the same thing, especially when they see my records and see that Batzdorf is the one who has been seeing me.
I'm really interested in mailing my MRIs and symptoms reports to other chiari NS around the country. I don't really know how to go about doing that, and which NS are open to looking at a mail-in case. In a perfect world I would love to just fly out to NY to Chiari Institute, but I don't have the money. I'm on disability and live paycheck to paycheck, and literally have no extra money for anything. The way things are right now, I don't even have enough wiggle room to put a little in a savings account every month. I don't have family I can borrow from. They're in the same boat as me.
In the mean time, I've had to give up going to school until I feel better. I'm just too sick. I have too many illnesses going on at once and doctors are taking an eternity to figure it all out. I'm stuck at home most of the time and it makes me nuts some days. I'm so bored. I feel like I've been sitting on the couch for 3 years. I don't even feel well enough to paint or play guitar. It hurts too much. It's very painful just to sit and do something. I pay for it big time with the headaches too. It's like the spoon theory. I have to borrow spoons from tomorrow to do things today and then I'm set back the next day and even the day after sometimes. The meds they give me don't help that much, I haven't even been taking the pain killers because the side effects haven't been worth the little relief they've been giving me.
I'm not depressed. Maybe a little sad. But terribly frustrated. It's strange, I was under less stress when I thought for sure I had chiari and was looking at neurosurgery than I am now with everything being uncertain.