Mar 9, 2015

Survival Mode

The past few months I've been stagnating in survival mode due to horrendous, persistent pressure headaches at the base of my head and upper neck. Throw in some charlie-horse muscle spasms on the sides and back of my skull and in my upper neck that are palpable to the touch and it's a recipe for intense pain, the kind that keeps me awake at night. When I finally do pass out from pain and exhaustion, the pain promptly awakens me again in a mere two to three hours. Subsisting on two to three hours of sleep per night is enough to render even the sanest of people completely mad. This lack of sleep, coupled with intense chronic pain really gets me down at times. I feel like a zombie most days and on my "good" days where the pain is bearable and I can attempt to distract myself from it, I get overzealous and overdo it because I never know how long the low-pain stretch will last and I feel the need to take advantage of those times whenever I can. However, on the low-pain days, all my body seems to want to do is catch up on sleep, but my mind is telling me I need to get out of the house and enjoy whatever I can before the headache becomes hellish again. The worst part of all this is, my doctors still can't seem to tell me with any certainty whether this head pain is a result of my 5mm chiari malformation or more due to my atlantoaxial instability (right lateral subluxation of C1 on C2). Or it could possibly be occipitoatlantoaxial instability (meaning my ligaments are so lax due to EDS that they're failing to hold my head on straight). But again, not even neurosurgeons can pinpoint with any certainty what exactly is causing the intense pain.

My best bet, no doubt, would probably be to travel to a place like The Chiari Institute of New York where they fix the instability and decompress the chiari in the same 6-hour procedure, taking a team approach with two surgeons present in the operating room, one to fuse the upper vertebrae and one to decompress the chiari. That means (hopefully) only having to go under the knife once and ensuring that my bobblehead is stabilized. However, New York might as well be Mount Everest to me right now as travel has become just about impossible lately. Even car rides in my trusty Aspen Vista cervical collar have become almost unbearable. Any movement really triggers and worsens my neck and head pain, which would suggest instability is likely the pain-causing culprit. This is not to say that my chiari is not causing me any problems. My balance has become really bad this past year or so. I used to be so graceful, so poised back in the olden days when I danced ballet. Now I am so clumsy I am tripping over my own feet, dropping things left and right and I have to concentrate really hard on basic tasks like walking or carrying something. I know that is not normal, not for me, not for anyone. I used to enjoy going on walks even after getting sick with POTS, but lately I fear that I look like a drunk person trying too hard to keep my balance and I wonder if people think I'm a drunk when I'm out in public...

I know that it's definitely time to do something. I've been told by my physical therapists, neurosurgeons and primary care physicians that unfortunately physical therapy is never going to remedy the problem, no matter how diligent I am with my exercises. My ligaments are too lax thanks to stupid EDS hypermobility. And while physical therapy can help to strengthen the surrounding supportive muscles and hopefully preserve the rest of my neck function and help provide stability to my neck's lower vertebrae (I currently have four bulging discs in my c-spine and some mild arthritis between all my vertebrae), the upper vertebrae are probably going to require a cervical fusion procedure to correct the instability. The prospect of a risky neurosurgery makes me sick to my stomach.

In terms of major surgery I've only had an emergency appendectomy, and fortunately I didn't have too much time to ruminate on the issue or be scared as I wasn't really given a choice. I do remember asking the on-call surgeon if I could just go home, research the procedure for a bit and then return the next morning for the surgery. He informed me that I could do that, but then he'd see me again in a day or two at most with a ruptured appendix and have to perform an even more painful surgery with a much longer hospital stay. So I consented to have a laporoscopic appendectomy that same night, and honestly, it was the best decision I ever made! I was in the hospital recovering for one day and then they released me the next night. Luckily the nurses and anesthesiologist were all very careful with me because of my dysautonomia and EDS. I was well-hydrated and there were no complications. I took some extra strength Tylenol at home and didn't even need the narcotic pain meds they prescribed. It hurt, sure, but in a few days the worst of the pain had subsided and I was able to get on with my life and start eating and drinking normally again.

I have a feeling that neurosurgery is a whole different ballgame though. I don't like the thought of anyone cutting into my neck and head. I just don't. It's icky. Necessary, but icky, and frankly very scary. There's too much important stuff up there. I have thought long and hard about what will happen to me if I don't have surgery though and the possibilities are also scary. I can't get in any more car accidents or sustain any type of major injury as it could easily be game over for me. Internal decapitation does not sound like a good way to go. So although it will be scary and painful, I have decided I need to stop being so afraid and proceed with surgery at the soonest opportunity. I do not want to live perpetually in pain and a neck brace. It would be nice to not have to wear this thing indefinitely. And even nicer to be out of pain. I can barely remember what it feels like to be pain-free but I know it would be amazing and I could accomplish so much more with my time and get so much more out of life.

Most importantly, if I get my health back I can devote 110% of my energy and focus to helping others who are still in pain and suffering from chronic, painful and misunderstood conditions like dysautonomia, EDS and chiari: the trifecta or "The Sara Syndrome" as the brilliant Dr. Rekate has coined it. Also, if you haven't seen it already, last week The Today Show featured a news segment about a young boy suffering from the debilitating effects of chiari malformation, dysautonomia and EDS. Please watch his story and share with your friends and family. This kind of national, mainstream media coverage is a huge deal for patients like us.

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  1. I'm very sorry to hear you have has such a major setback and have been feeling so terrible. Have you had the surgery?
    I was just checking in to see how you are and if you had been up to writing lately. I took a long break writing myself and I'm just now trying to get back. After 11 years of progressive neurological chronic pain and then several more disorders 4 years ago making me bedbound and unable to move or speak, etc. I'm now working on the recovery process. I thought that wouldn't happen for me. You never know... Don't give up hope. No matter what happens, you are so special and important. Thank you for sharing your story. God bless you. Mary

  2. Thank you so much Mary for checking in! I have not had the surgery. I have been on a blogging hiatus as well due to some scary symptoms that struck last fall, I was unable to walk for several weeks and it was very scary. Over a full year later and I am almost back to my baseline. I am so glad you're working on the recovery process as well. I have been wondering how you've been doing as well. I am going to attempt to update this blog more regularly. I am happy to hear from you!