back & spine pain--long, opinionated post by Rose

[Guest guest]

I have a swollen brain. Otherwise my mri is ok.

Jodi, I hope you don't take offense, but I laughed out loud when I read this, because it sounds like something many of our doctors would say, you know, like, "Your leg fell off, but other than that I don't see any problems."

As far as the disk, it's tempting to blame everything on sarc, and it can certainly affect our spine, but I've known many people with herniated disks & other spine problems, and none of them had/have sarc. On the other hand, if you already have joint/spine problems, then I think sarc will surely intensify them. I've had back pain for more than 25 years, starting when I helped carry a very heavy sofa & felt something pop. Then years of poor body mechanics as a nurse didn't help. Seven years ago I blew a cervical disk turning over in my sleep. Absolutely the worst pain I've ever had, not in my neck, but my shoulder. At times it felt like someone was twisting my arm off at the shoulder. After 2 months of p.t., traction, muscle relaxants, chiro, massage therapy, narcotics & going around at work with a balled up towel wrapped in tape that I would put against my shoulder & lean hard into the wall for a little relief--the pain continued, I lost all the reflexes in my right arm & most of the strength. So I opted for an anterior spinal fusion, which was immediately successful. I had a couple of days of pretty bad post-op pain, but nothing like the pre-op pain; the strength began to return pretty quickly & numbness resolved within a few weeks. Now I'm debating surgery on my lower back, because the pain in my legs is really debilitating. I've had 2 surgical opinions; there is probably a 50-50 chance it would help the back pain, but 80% it would decrease the leg pain. There are newer techniques which have lower risks & reduced recovery time, but I'm still hesitant. A very good friend of mine, an OB doc who has experienced many years of back pain, along with a variety of joint problems, has encouraged me to wait & had me read a book called "Back Sense." I'm working on the book now. If anyone but this woman had told me this stuff, I would have blown it off, but she is probably the most grounded, objective person I've ever known. This is how she explains it:

The book that I referred to is Back Sense by Ron Siegel et al. .This work stems form new understandings of how back pain worsens after an initial injury due to kinesiaphobia (fear of movement that may cause pain) and that a history of trauma in one’s life and psychological stress are more predictive of chronic back pain than physical or x-ray findings. The pain is VERY real but is due to the secondary muscle tension (severe) from the chronic stress. The work I do with stress reduction along with yoga and very slow gradual conditioning has been shown to be more curative than surgery (unless of course there is a spinal tumor, spinal infection etc.). It has made a complete turn around in my pain—it is gone and used to be severe (ever since the second spinal fracture when I was 23). I have heard people say that they think that this is denying the reality of the pain—it is anything but this. For those who enter into seeing the possibilities that this raises, there may be great reward in decreased suffering. After you read it, I’d love to hear what you think.

So, I'm going to give it a try. I've always believed in a powerful mind/body relationship, which can be very critical in pregnancy & childbirth, so I guess I'll put my money where my mouth is. I do know that many nights when my neuropathic pain in my feet was keeping me awake, that if I really focused on my breathing, that often I would be able to fall asleep & sleep for at least a few hours.

This is all in addition to the commonsense stuff we already know, hydration, stretching, good nutrition, etc.

Ramblin' Rose

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[Guest guest]

No offense at all. I think it's pretty crazy how dr's talk to us

sometimes.

My neck injury was from a car accident I had 5 years ago. I went back

to work too soon afterwards and told myself the pain wasn't so bad. I

think in the long run that is what caused it to not heal right. If I

would have waited a little while longer and not been so stubborn to go

right back to heavy work (was a dog trainer at the time) then maybe my

body would've healed itself. I'm leaning toward the surgery mostly

because of the fact that my right leg has been twice the size as my

left for quite a while and I am having to think to walk and move it.

The doc thinks that it's cuz the spinal cord is compressed and not

allowing signal. I also get the shoulder and arm pain really bad. I'm

going to " interview " the surgeon really well before I make any final

decisions. I don't want to have to repeat this surgery sometime in the

future because the discs bulge on either side of the fused one but I

also don't want to lose function of my leg either. So confused

[Guest guest]

Jodi, a herniated cervical (neck) disk could be causing your arm problems, but I don't know how it would cause your leg swelling. Is this a new symptom, or have you had it awhile? Have any of your docs done a thorough evaluation? It might be something like lymphedema, which would possibly respond to a qualified massage therapist. As far as surgery, the neck surgery actually has a better track record for relieving symptoms than the lumbar surgery, which is what I'm considering. If you have neurological deficits from the disk, like muscle weakness, loss of reflexes, numbness, etc., there might be more urgency about surgery. My arm was so useless that several docs told me I was risking permanent impairment to wait too long. The only reason I waited 2 months was that I had planned a trip to Anchorage, Alaska, for 2 years! If I had the surgery right away, the surgeon wouldn't clear me to go, so I took a pneumatic traction gizmo, lots of pain pills, and had the surgery a couple of weeks after I got home.

I'm still squeamish about the lumbar surgery, though. Because all of my disks are abnormal, & 2 would need to be fused, it would put more stress on those adjacent, like you said. I don't want to have a few good months, then be just as bad off. So I'm going to give it 2-3 months, then decide.

I would make a list of questions for the doctor--specifically which disks could be causing which problems, and get some more information about the leg swelling.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: back & spine pain--long, opinionated post by RoseDate: Thu, 31 May 2007 16:53:12 -0000

No offense at all. I think it's pretty crazy how dr's talk to us sometimes.My neck injury was from a car accident I had 5 years ago. I went back to work too soon afterwards and told myself the pain wasn't so bad. I think in the long run that is what caused it to not heal right. If I would have waited a little while longer and not been so stubborn to go right back to heavy work (was a dog trainer at the time) then maybe my body would've healed itself. I'm leaning toward the surgery mostly because of the fact that my right leg has been twice the size as my left for quite a while and I am having to think to walk and move it. The doc thinks that it's cuz the spinal cord is compressed and not allowing signal. I also get the shoulder and arm pain really bad. I'm going to "interview" the surgeon really well before I make any final decisions. I don't want to have to repeat this surgery sometime in the future because the discs bulge on either side of the fused one but I also don't want to lose function of my leg either. So confused

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