Hello. I am hoping that someone on here can offer some guidance as to what my next step should be...I am not an usual poster, more of a reader butI will try to keep it brief as not to bore you with all of the details...
I was diagnosed with Chiari in late summer of 2013 after experiencing horrible back pain. I had an x-ray taken of my back which showed kyphosis so, prior to my diagnosis, my primary physician had referred me to a physiatrist, who then ordered an MRI, suspecting mini strokes when I described some of my symptoms (if I turn my neck to fast, it feels like it gets stuck and if I attempt to move it I feel a jolt, like electricity, my vision blacks out and then my neck is sensitive for hours after). I saw a neurosurgeon about a month later who dismissed me as "not a true Chiari " patient because, according to the MRI, I only have a herniation on my right side. I called my Primary back as soon as I got back from that appointment and demanded a second opinion because I was treated so poorly and dismissed so quickly. About a month later I saw the 2nd neurosurgeon who had a much better bed side manner but told me that "some people have sensitive necks and that I'm not 18 anymore so I have to be careful when I move my body" (At this time I was only 31, hardly the age to be considered "old".) After this appointment and no relief, I returned to my Primary who then sent me to Pain Management, insisting that my pain and issues were muscular in nature. On my fist visit with him he wrote me prescriptions for 6 different medications including muscle relaxers and sleeping medication and also anti inflammatory medication. I have a history of ulcers and cannot take medication like this because I will get sick. I tried to explain that to him but after 3 visits and getting no where I refused to go back. In fact, I went on a doctor strike and decided to manage my pain and symptoms myself since it seemed no one was listening. I have done a lot of research on Chiari but hesitate to attribute all of my symptoms to it. (I have a fairly long list of weird symptoms that don't have any explanations, like constant blood in my urine) This was working fairly well until a month ago. All of a sudden I noticed that my butt would go numb then I would get a deep throbbing ache in my leg if I was on my feet for more than 5-10 minutes. The same thing would happen if I had to sit for longer than 20 minutes, which I do daily as my job requires travel in a car for at least 2 hours a day. I brushed this off as a pulled muscle and leaned to notice the signs before it got really bad. This was a manageable way to live my life, however last week some weird things started to happen and forced me to return to my Primary. On Friday night, date night with the hubby, we had a whole night planned with out the kiddos. I was only able to make it through dinner before my back started to ache and the numbness set in. We went home, but I was unable to use my usual methods of rest, my heating pad, and ibprophen did nothing to alleviate the pain. My sleep was horrible that night and when I woke in the morning, I felt a lot of pressure in my sinuses and head, plus I had pain and pressure all along my spine. I also noticed that my scalp was really tender and the area right above my temples, on both sides, seemed to be budging. I have a nurse who is a RN and she thought that I had the start of a sinus infection. I looked it up because I have never had one before and the only symptom I had that fit was the pressure in the head but trusted her opinion and bought some sinus medication and rested. My Saturday night, it felt like I had been shot in the face. Things only got worse on Sunday and considered going to the ER, but the one around here is not very good and knew that they would be of no help. Most nurses/doctors cannot even pronounce Chiari let alone know anything about it. By Monday I couldn't take it anymore and made an appointment with my Primary. After listening to my symptoms she diagnosed me with a sinus infection, prescribed me an antibiotic and sent me on my way. I told her about the numbness in my butt, etc and it wasn't even discussed. I have not started the antibiotic because I know this is not it. I am not sick, nor have I had even the slightest cold all winter. I told her my nose runs after coming inside from out in the cold, it seems she based her diagnosis on this.
I have seriously considered contacting the Chiari Institute in NYC but am not sure how the process works. Do I need a referral from my doctor first? My insurance probably won't cover it because I am "out of network" but would attempt to pay for a consult out-of-pocket to at least have something to take to my doctor to give her direction.
The only test I have had is a head MRI. No one has looked at my spine to see if there any problems there, which is odd since all of my issues are with my back.
Sorry to go on an on, but this struggle is going on 2 years now and I know there has to be something that someone, somewhere can help me with. I am only 33 and most days my body feels 80. I am a very active and ambitious person and lately I struggle to make it through a whole day without intense pain. My methods are no longer effective so I need so guidance as what to do next. Or at least someone to assure me that I am not loosing my freaking mind, because some days this is how I feel.
Thanks to anyone who can help.