Sunday, December 20, 2015

I'm not crazy.

Since seeing Dr. Liu in October, I have actively been trying to find a surgeon to treat my neck. At this point I have reached utter desperation. Though I can't have surgery yet, I know how difficult - if not impossible - it is to find doctors that treat "people like me".

Before traveling to Florida I tried Dr. Sandhu, Dr. Henderson and this really awful guy named Dr. Patel. Previously to finding Dr. Liu I had also tried a few others ("spine specialists") who laughed in my face about neck instability. I've learned that anyone with the title "orthopedic" anything behind their name do not like people with EDS. I've been told no by so many "medical professions" in my life who just don't care. I've made up my mind. I won't get told "no" or "there's nothing wrong" anymore.

So I've declared: no more messing around. It's go big or go home..which would basically mean becoming bed ridden again. My great neurologist, Dr. Chehrenama, suggested I see Dr. Franck in Tampa. So back in November I called and scheduled an appointment for a consultation with him for this Friday (12/18). He wanted an upright MRI (gosh those cursed things), and happened to have a facility he works with right there in Tampa..who didn't call to cancel an hour from my appointment.

Ariel, my adopted manatee.
My mom and I decided we would make it a three day adventure and go see all sorts of animal things. We got to drive to Homosassa Springs promptly after landing in Florida to visit my old adopted manatee. It was amazing. We got there right before the last boat left and basically had the park to ourselves. It was a great way to de-stress after flying and it completely took my mind off of my impending doom.

The next morning I went to the MRI facility to have my "Franck protocol" upright MRI. Let me tell hour and a half MRI, sitting upright, with your head strapped to the wall, with sides squeezing is not fun. Then, they force your head and neck into awkward positions and you can't breath, move or swallow. It was a great way to start an already stressful Friday. Thus, we went and stress ate fries at Ruby Tuesday's before my appointment with Franck.

After lunch we headed to Dr. Franck's office and started the never ending paperwork a spoonie faces. Over 10 pages of questionnaires. They're the same thing every time and they never seem to ask the right questions. Like "what hurts?", why not "what doesn't hurt"? Once finally finishing all the paperwork, Dr. Franck brought my mom and I into the room and spent over two hours going over my entire medical history.

He spent an hour examining me, watching me walk and taking down vitals. Apparently I walk really funny. No one has told me that. At this point he tells my mom that he already knows what's wrong and what to do. After a few minutes he calls us back into his office to go over my MRI and DMX-ray. My initial impression was that I didn't have instability and that he was going to tell me that he couldn't help me. Nope. He gets to the lateral part of my DMX and starts showing me how my C1 on the right side slips 7mm off of C2 (standard instability patients who get fusions are a 4.6mm) and it slips 5mm off of the C2 on the left. I had a momentary rush of relief that wow, he might be able to fix me.

Then he starts looking at the MRI and says that I indeed have a herniated cerebellum...also commonly known as Chiari. My herniation is not caused by development, but by trauma - so he didn't want to label me with Arnold Chiari Syndrome. Yay being a horse back rider with two traumatic brain injuries, multiple concussions and whiplash...oh plus EDS. So here I am sitting here relieved that the doctor I came to for a cervical fusion agrees I need one, but now he's telling me that something I thought had been completely ruled out by my favorite doctor and surgeon ever...was a real thing? I still haven't completely been able to come to terms with it and am kind of in shock. I've heard about chiari a ton in the last year, and I was so relieved when it was taken off the table for me. Just the shock and sadness of being told that, "no you do have it"...was a lot. My tonsils have dropped 3mm and are being pressed on by the C1.

I also have scar tissue build up from the synovial joint damage on the C1, that is commonly referred to as a pseudotumor, that is causing stenosis to my spinal cord and CSF flow. No wonder I'm still not 100% after a stent that should have really fixed mostly everything. The stent has still made a major improvement in my life, but until we get my neck stable and the stenosis fixed it won't be able to work to it's full potential. Apparently the ligaments in my occipital, C1, and C2 are damaged. My alar ligament is extremely stretched out from compensating for the other ligaments that are damaged (yay EDS). He worked his way down my c-spine and noted that I do have the start of degenerative discs. However the biggest problem is the herniated cerebellum and the tendon damage at my C1.

Thus...we get into game plan mode. He says craniectomy and my heart falls. I know too many other zebras who have had these procedures completely butchered. Very few have been successfully decompressed and usually have problems later on. I thought we were past that. I was fine with the stenting, but this?
Then we get into the fusion - and I get over the craniectomy for a minute. It all seems like a fairly simple procedure. It's a three hour surgery, with the craniectomy and fusion, then I'm discharged that night. I do have to stay in Florida for two weeks post op, but I will be on my feet and able to be a tourist - pain permitting.

Once I got past the fact that the two week post op stay in Florida was non-negotiable, I started to think further on to the future. I'll be in a brace for 6 weeks and able to return to school when I feel ready. Which was a major concern for me. I may even be able to return to work sooner, if accommodations can be made.

Of course I asked about riding. Luckily Dr. Franck is a fellow equestrian and understands my "pain". No heavy activity for 6 months and no riding for a year.

A year. I had no other reaction but to turn towards my mom with tears in my eyes. A year of not sitting on a horse. A year my baby horse will be sitting in a field and not being ridden. A year that neither of us will be meeting my "deadline" for us. I had so many plans for my super pony. She'll be 5 this Spring, and 6 by the time I can ride her again. It's just crushing. I've hit so many road bumps in my "equestrian career" with Luna having just as many problems as myself. Now that it's all had a chance to sink in I've become rational and realize without these procedures I won't be able to ride anyways.

I'm excited, scared, overwhelmed, sad and happy. I came down to have my cervical instability confirmed, not for a diagnosis of chiari. My mom keeps reminding me that it's not truly chiari that it's just that my cerebellum has herniated. But really, truly, it's chiari. Any other doctor would call it chiari. It even shares the same insurance code as chiari. I'm hopeful that the decompression will "fix" it, if not for a little while.

I'm so thankful I have found Dr. Franck and even more thankful that I have answers, even if some of them are unwanted. I will be undergoing these procedures as soon as I can come off of the blood thinners from my stent. The goal is first week of February.

For now, I will enjoy my horses while I can and enjoy spending the holidays with my family.

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