Saturday, May 24, 2008

The Pain In My Neck, She Has A Name...

And no, her *name* is NOT Dr. She Who Will Not Be Named! SHE lives closer to the pain in my gluteus maximus, right below my sacrum...



Degenerative Arthritis...another name for Osteoarthritis. The most COMMON type of arthritis in over 100 different *brands* of the joint-inflaming disease we sometimes just call "arthritis". It usually affects many of us as we age and is caused by the inflammation, breakdown, and loss of cartilage in the joints (because, as we age, the composition of the cartilage/fluid content changes and is more susceptible to breakdown). Being over 40, fat, female, having prior injury to a joint, having another inflammatory disorder (such as gout, etc.), and just plain old wear and tear aging are all RISK factors for developing Osteoarthritis. Oh, and there is NO CURE (sound familiar MSers?!?), only palliative treatments. And, although I've heard the *urban myth* (I say with sarcasm, because I've heard this repeatedly from OTHER MSers!) CORTICOSTEROIDS (aka, Prednisone, Solumedrol, etc.) INCREASE the risk of developing Osteoarthritis in the joints, there is little DOCUMENTED information about this...God forbid, the drug companies/Medical Establishment should ADMIT 400,000 MSers might be right and tell us this!




And now, back to me...as I'm CERTAIN your life is revolving around MY world. LOL Let me give you an idea pictorially what is occurring in my cervical spine. This is a picture of a relatively NORMAL MRI of some poor, unsuspecting sucker's neck/spine:
You will note the thin, white lines running vertically along that long canal in the center? Well, that long canal/thick line is the spinal cord, resting comfortably within the spinal canal created by the bones. Those thin, white lines are cerebrospinal fluid (abbreviated as "CSF", for those that want to play along as armchair neurologists, such as myself)...that wonderful and necessary liquid that surrounds the brain and spinal cord and CUSHIONS our delicate neurological systems by providing a nice BATH for our little nerve fibers, tissue, and axoms to float around in. We HAVE to have it...CSF...without it, our brains and spinal cords would die, so believe me when I say it IS important and "should" surround these tissues and FLOW around them.




That Lego-like, chain-linked column running vertically along side the spinal canal to the left of it with the *bandy* looking sections is the actual spinal column or "vertebrae" (again, for that armchair neurologist in you!). Between each section, there is a thin, dark line, and those lines are the vertebral discs (simplified? cartilage)...the cushioning between each of our spinal bones that lets the bones flex, glide, spin, and move. There are 7 bones in our cervical spines and there is "supposed" to also be a natural CURVE in this area of the spine as well...it gives our fat heads something to rest upon and the "curve" (otherwise known as the lordotic curve...hehe...) bends slightly forward. Some attribute the curvature here to represent a "C" shape, and thus believe THIS section of the spine got its name "C-spine"...personally, I think it was probably just a lazy neurologist or radiologist that started this trend, who didn't know if the "C-spine" was spelled CERVICAL or CERVICLE (the latter referring to the CERVIX, or the...ah...cartilage opening of the uterus on the "neck" of the womb. Kind of a big difference in location!!!)...but, I digress as usual.




So, those little, dark bands, called "discs" are *supposed* to sit neatly and comfortably, with an EVEN CIRCUMFERENCE between those 7 cervical (huh, huh...I said *cervical*...humor for MDMHVONPA) bones. And those 7, cervical bones are not *supposed* to touch. Those discs are also not supposed to protrude (or bulge/compress/herniate) into the spinal cord (medial) or outward into the tissues (lateral) of the neck.




Now, MY NECK:
Note a few differences? And the cause of the PAIN IN MY NECK as well as the numbness in my lateral hands:
What is ALSO very, very important (at least to ME!) to conclude on my C-spine MRI is this: MY CERVICAL LESION HAS HEALED! Yep, no enhancement, no "shadow" (what would be seen with or without gadolinium...the dye used to show if there are lesion enhancements/active disease/inflammation), and no indication of it's former self...it is NOT causing my current symptomology (although I've been told not to toot my horn too loudly about this just yet, but I say PARTY). So, back to the pain in my arse...I mean neck...I mean, my appointment with Dr. SWWNBN!




Long story drawn out longer with embellishments for effect (LOL, Spaz Attack...just for YOU). I went to see Dr. SWWNBN on Thursday, with the sole purpose of putting my foot down about these MS drugs/treatments and to formulate a cohesive plan between us (because she HATES to be left out of my decisions and wants to believe they come from her) for any ongoing care I may need. I had decided to give TYSABRI one more shot (er...IV) in June and, if my systemic joint pain continued to debilitate me, I was/am stopping the MS disease-modifying therapies. The side effects and outcome ratios are just NOT worth it to me at this point in my life...I am losing too much time at work and QUALITY of life at this juncture to continue to consider the treatment(s) beneficial in the short term (hold your tongue all you CRAB/TYSABRI/NOVANTRONE/IVIg users! It's MY PARTY and I'll cry if I want to...or stop medications, too.). As I explained to Dr. SWWNBN, I am not CLINGING DESPERATELY TO LIFE and seeking LONGEVITY as much as I am the "here and now" moment...and I'm sick of feeling sick in the here and now...from drugs...from treatments. I'm willing to put the bullet in the chamber and spin it...take the gamble...for a few days/weeks/years of normalcy. Until something better comes around or I change my mind again out of FEAR of the unknown...and either could happen at any moment. LOL




With a look of bewilderment (or horror, it was hard to tell), Dr. SWWNBN proceeded to ask me if I was "suicidal"? The look of bewilderment (or horror, it was hard to know) shifted to MY face. "WOOT?!?" I exclaimed rather loudly in disbelief, followed by a resounding, "NO!"




I went on to attempt to explain that, just because I was no longer willing to accept treatment as deemed by the Medical Establishment, did NOT make me suicidal (although I WAS bordering on HOMICIDAL thinking), continuing with the "you're not God" lecture and the "you don't know everything and can't make me do/tell me what to do anything" speech. Yes, I DO banter with my neurologist and I find it most refreshing to have that opportunity to REALLY tell a doctor what I think.




Unfortunately, THIS conversation quickly became shadowed by the conversation (and subsequent "prove it" episode I developed) surrounding my NECK and the symptoms I am currently having NOT due to MS...allegedly. The MRI was quickly flashed across the sky like a Batman signal and the good doctor pointed and remarked and bullied me into submission (she had to find SOME way to shut me up and put me in my place) to listen to her belief (and a radiologist' report) that I have a "bad" case of osteoarthritis in my neck. She also did a thorough neuro evaluation and concluded I am developing much more weakness in my left arm/hand/wrist...AND, if I don't do something about this now, I will lose functioning of my left wing...huh. KABOOM.




She INSISTED I see a neurosurgeon for evaluation...I wore the heels off my shoes digging them into the floor and repeatedly saying "no" and that I "didn't care" (more bewilderment and that "are you suicidal?" look...LOL) as she tried to drag me by the nose to the neurosurgeon trough to feed. I won THIS one. She finally relented and moved on to plan #2: Physical therapy with steroid injections into my neck. My heels became bloodied at this point.




Ah, that would be "NO!" to having someone dig around in my spine (who I don't even know because Dr. SWWNBN would not be doing the injections...has to be done with a type of x-ray called "Flouroscopy") just to shoot steroids into the intervertebral spaces of my spine, which I believe have degenerated BECAUSE OF STEROIDS!!! Yeah, I'm breaking a leg (or my neck?!?) running to catch THAT band wagon to jump upon. No, no, no.




Now, after 3 days post appointment, I have compromised with at least TRYING physical therapy...although I'm not hopeful much will be resolved from this. But, hey? It's free massage, right?!? Although I've had a PT tell me they don't "do" massage much anymore...guess they are above that "touching" thing, like MOST medical practitioners. Whatever...I'll let them string my head and neck up in traction devices and hook up electrodes that shock me and give me the same old exercises to do that I SHOULD be doing anyway. Been there, done that...have had many sessions of PT before...back when ALL of my symptoms were attributed to degenerative disc disease in my neck and MS was not even THOUGHT to exist in my noggin. But I'll go. It's all about compromise. Dr. SWWNBN needs to FEEL like she is doing something proactive to "help"...I'll give her THIS much. And, after I've had some time to digest, research, and consult with a few colleagues, I *might* return to our conversation about injections and surgeons and "WHY YOU'RE (me) SO E-FFING SUBBORN!" And I quote.




So...here I am on a beautiful Memorial Day Weekend in Seattle, sitting at a computer desk, craning my neck to type on a keyboard with numb hands, when I should be outside enjoying the *here and now* moment of a gorgeous day...before I have to return to work a grave yard shift tonight...sigh. C'est la vie...or at least MY life anyway...

4 comments:

Anonymous said...

I have been reading your blog with great interest for some time now. I have the advantage of knowing a bit about you as a reust , but not the otherwayaround. I have a 28 year old daughter with MS and try to keep myself current and educated as much as time allows. You have such determination and I love the way you express yourself. You have a gift. I will await, as you will, the outcome of giving PT a try. Life needs to be better for you to enjoy. I hope your Northwestern weather is as good as our northeastern tomorrow since I picture you outside enjoying it more than you did today. Do keep us posted on how everything goes for you and your neck and spine. Having had a herniated disk a few decades ago, I appreciate your pain. I chose to do nothing and the disc receded so I have no symptoms now. I hope your body supplies you with somewhat the same relief.

Deb

pb said...

Actually, here in Upstate New York, we practically have an epidemic of steroidally exacerbated bone loss. My doctors feel that this is certainly how such an active person as myself could have early osteoporosis signs.

It's not an urban legend here, but accepted as fact and treated as such.

I avoid the steroids at all cost now. And no one is arguing.

Cause, I can be really scary during the roid rage!!!

Spaz Attack said...

Go for getting shot Cheese It (with Steriods that is). Since Jesus ain't callin ya yet might as well go for less pain, more gain, right? Face it ... you're already a degenerate so what's getting shot one more time gonna hurt? Seriously! As for the PT Dr SWWNBN is probably hopingthe electrodes will shock you into submitting to her Godly advice ;), And by stringing your neck out she's probably hoping to end you being such as stiff-necked, hard-headed stubborn gal (she's probably in agony over your stubborness same as the Almighty was when he called His people stiff-necked in Exodus and warning them to repent or else he'll exterminate them -- so ya gonna head the advice of your almighty Dr. S or continue to be a F*ing Mule?
Hey ... I know it's your bod so party on with it any which way you can. Be sure to suck up plenty of Dew tonight so you can make it out of the grave (shift) and no to fact another beautiful day in the neighborhood.

Charles-A. Rovira said...

That was one of the best posts on MS and other conditions {profusely illustrated, with arrows and labels and stuff. :-)

That was astoundingly good.

Thanks for sharing and enlightening us all.