Wednesday, June 17, 2009

Symptom Watch and Alternative Treatments

My head is killing me. It gets blurry at the top of the pain scale, but I'll call this headache an 8.
My heart and breathing have been bad on and off.
I actually don't have a stomach ache today (which leads me to be more confused about whether or not I should see a GI doctor, since my symptoms are intermittent).
My knees have been really sore. The fibulas have been popping out often, which is probably the cause of the pain.
My muscles are insanely tight. I have large "marbles" of muscle throughout my neck, shoulders, and lower back.
The fatigue has been keeping me in bed for 12 hours nightly, and then on the couch for at least another 6 hours EVERY DAY!
For the hours that I am upright, I have to wear my neck collar all the time. It is the only thing that keeps the symptoms from becoming unbearable, most of the time. If I had a CTO that fit or a traction device that was made for my size, it might also help with symptom alleviation.
I have difficulty sleeping at night. I have trouble falling asleep. Then I wake up after about 4 hours, and I'm wide awake. I cannot fall back asleep by any method other than medication. My whole life, I was successful using progressive muscle relaxation to fall asleep. But that doesn't work for this kind of awake. I feel unnaturally wide awake...especially knowing how much sleep my body requires.
And my head pain is horrible! Did I mention that? So much pain. It hurts through the back of my head, my temples, the top of my head, my forehead, behind my eyes, my cheeks, and my jaw. So, pretty much everywhere.

I wanted to share a few articles about chiropractic care and Chiari. I will also include articles about cranio-sacral therapy and Chiari. Chiari is a contraindication for both of these types of treatment. Both treatments can actually make the symptoms of Chiari worse. I believe that most practitioners mean well when they use these therapies to try to help Chiari patients. They simply are not adequately trained or equipped to improve the situation. And the treatments they have to offer are not safe for those with fragile cranio-vertebral junctions and CSF pressure sensitivity.

However, massage therapy can be helpful. I do get massages, and they do provide some amount of relief. It is just very temporary relief. I would probably experience less pain if I had daily massages, but obviously, that isn't a feasible option. I did read about something that has helped a fellow Chiarian to relieve the terrible knots of muscle. It is called a Thera Cane. It is a tool that maximizes leverage to allow for beneficial self-massage of "hard, knotted trigger-points". I'm considering buying it, although I just feel that I can't spend any money right now. (I recently bought a GPS for my car, some more salt pills, and new daily contacts. My bank account is a bit depleted.)

Also, the neurologist that I am going to see next month is part of a group called "Integrative Pain Medicine". They believe in the use of both medical and holistic treatments for the management of chronic pain conditions. I hope they can come up with something to help me survive until surgery.

I'm also concerned (although this is all based on hearsay). I've read about multiple patients now that were scheduled for Cranio-Cervical Fusion surgery, and upon completing osteoporosis treatment, it was found that surgery is no longer an option, due to some amount of bony fusion between C-1 and the skull having formed. The problem: whatever kind of fusion is forming in these patients, it is not fusing them in the needed extracted position. Only surgery could do that. Something seems to have gone awry at TCI. (Again, keep in mind that I don't have any real evidence of this.) Dr. B doesn't seem like himself. He is no longer promoting surgeries for which he used to advocate so strongly. I truly hope this doesn't happen to me. If anything, maybe my conservative treatment for osteopenia will prevent any improper bony fusion.

I just have my whole future wrapped up in this surgery. I can't move into the next stage in my life until I have this surgery. I just can't wait. I don't know how to wait any longer. Not when my body is torturing me daily.

I've been watching "Mystery Diagnosis" daily since it became summer rerun season. I relate so much with the suffering patients; but when they are diagnosed and treated, I get jealous. These people are very unfortunate in the medical world, because they've gone so long without diagnosis. But on this show, most patients return to their normal life after treatment. It just seems so unfair that with my conditions, people suffer endlessly. So many are enduring so much pain right now. Please keep my Chiari friends in mind, including Kristen, Hannah, and Hannah!