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View Full Version : First time here, hello everyone



standingcows
08-21-2004, 02:19 AM
Hello
I am brand new here and hope to get to know some of you. I am 53 and have just been diagnosed with idiopathic degenerative scoliosis along with degenerative arthritis of the spine.
I had my first surgery for nerve root compression in May. My pain started about 3 years ago and it was basically down my leg into my foot. It has really been disabling.
AFter the surgery I had some short lived pain free days, but it has come back. No DR. says more surgery will probably be necessary. But he doesn't want to do a fusion because it will cause weakness and stress on the next vertabre and it will start a chain reaction.
So for now, he has set me up with another nerve block (I hate those) and physical therapy and I take Darvocet or Oxycodone (only on REALLY bad days) and try to learn to live with it.
I don't know what the numbers are on the curve as DR hasn't told them to me, but everytime I go in to see him he sighs and says what a mess my back is! I do know that the problem is at L3 and L4.
Anyone have any experience with PT or spinal blocks? Any other things that have worked for me in releaving the leg pain?
Thanks for reading
Liz

suejeryl
08-21-2004, 08:06 AM
hi, liz! how depressing to have surgery and still have pain! for years i managed my low back/leg pain with chiropractic; pilates (supervised by qualified teachers; you can hurt yourself doing pilates the wrong way!); accupuncture; accupressure. none of these things work anymore, but i bought a lot of time with them. i've never had pt but it sounds like a good idea. i take vioxx everyday (it helps a lot) and darvocet on bad days; sometimes a valium at night. finally, epidural cortisone injections keep me on my feet while i wait for my surgery date. best of luck to you; refuse to "live with it"! there's an answer out there somewhere...

lrmb
08-22-2004, 05:18 PM
Hi Liz,

So sorry to hear about your pain. I'm a lot younger than you and in a slightly different situation--bad scoliosis as yet untreated by surgery, and with degenerative low disks. I injured a disk last year (at least that's the current theory) which has caused chronic low back pain, about a year so far. I tried epidural injections with steroids but they didn't seem to work for me--apparently this is really unusual though.

This may be a dumb question but have you ever tried low-level anti-depressants for the pain? (Dumb because they are a level lower than the drugs you mentioned I think.) I had Elavil for nerve pain which really ratcheted my pain down so I could do some physio. If you can, try one or two therapists; I had absolutely no luck with the first couple I tried who were too willing to write me off if I couldn't get through some exercises without some pain. Finally I found somebody who taught me to spend time with really, really simple things, even doing half an exercise or a quarter of one, building up strength really gradually. It makes me feel better just to know I can do it, even if I still have some pain.

I agree with Suejeryl, try not to give up... I know it's so hard. Being in Boston you should be able to find somebody good and / or sympathetic, if you have the luxury to shop around in your insurance package. Your back may be a mess--there are a lot of us with them out there!!--but you have to believe there are ways of managing.

Wishing you all the best, and know you're not alone...
Laura

suejeryl
08-22-2004, 05:39 PM
hi, liz!

laura is on to something; the antidepressant elavil is often used to treat chronic pain. i have never used it, but i know people who take it for depression...it is effective and very inexpensive; how often do you find that combination these days? why not try seeing a pain management specialist? they would know if an antidepressant therapy would work for you...i went to a pain management specialist this spring; it was the best move i've ever made for my back! hang in there....

lrmb
08-27-2004, 05:52 PM
Hi there,

Out of curiosity, Suejeryl, do your docs think that your low-back pain is related to the scoliosis? I have similar pain, but many docs and physios have told me it is from a disk and not related to the scoliosis, only one pain doctor thought it is related. (I'm seeing another surgeon soon so will also ask him.) I'd be curious to know what your docs said about your case.

Thanks!! Laura

suejeryl
08-27-2004, 06:23 PM
hi, laura! i have suffered off and on from sciatica that was due to some bulging discs; the sciatica was resolved with cortisone injections and chiropractic. however, my rib pain and the pinched nerve that is slowly disabling my left leg is due to the scoliosis. if i had wanted it, the surgeon would have attempted to relieve the pressure on the nerve without attempting correction, but he cautioned that my curves were severe enough and my bones weak enough to cause my spine to collapse; then we would be fixing things on an emergency basis...not an appealing option! i found this surgeon through a pain management specialist and i would recommend that to anyone...the pain could be from lots of things and it's important not to blame the scoliosis right off the bat!

momoflacrosse
08-27-2004, 10:49 PM
Hi Laura:

Now this is only my opinion but as far as I am concerned any problem I have with my back whether degenerative dics Disease or what ever I can directly relate to my scoliosis - I am having major problems with my lumbar curve and sciatic nerve trouble and it is in the lumbar curve and my thoracic curve and the twisting of my rib cage are the root problems in that area - I am really so fed up with the orthopedic Dr's out there that don'r want to admit just how many problems are off shoots of the scoliosis - heck the last one I saw todl me that scoliosis wa not a painful condition - HMMMMMMMM now waht does that say? Antway I would be asking him why he says that your issue has nothing to do with the underlying condition?

Nancy

exactly150
08-28-2004, 06:40 AM
Nancy,

Run, don't walk, to another orthopedist. I am now on disability because of my back, and I had an orthopedist refuse to help me acquire the disability, because it was his opinion scoliosis CAUSES NO DISABILITY!! I wanted to ask him what box of cracker jack he got his medical license out of. I left him, fast.

I go to a complimentary medicine doc,, and he has suggested pantothenic acid , taken several times a day for pain. I believe it does help somewhat. I am all for trying natural things, if at all possible. Deb

momoflacrosse
08-28-2004, 06:52 AM
Hi Deb:

Not to worry I haven't seen that guy again- I am finally approved on disability but in 1998 my ins long term disability was cut off due to one of their dr's saying scoliosis sisn't limit my abilities - that caused me to lose me home and car but I have survived to be a continued fighter no money etc but still here. I am now waiting to see another surgeon in Nov but I doubt anything will happen until I lose weight and get my current heart issues under control. Sigh it is always something - thanks for the words of wisdom

Nancy

exactly150
08-28-2004, 07:11 AM
Nancy

I understand muchof what you now face. It took two years to get my disability, and, during that time, we nearly lost our home as well. During the last two years, it seems life has just taken a terrible turn. Unable to work to support myself, which does something to your self esteem, losing half of our total income. And, living here in New York, every little bit helps, it is so incredibly expensive here.
We were unsure the disability would go through, we amassed credit card debt to nearly 30,000. That is how we paid for food and the mortgage. Talk about feeling sorry for yourself!!! I did, ten times over.
Every month, we wonder if we can make it with the bills or else we will lose our home - and all because of this damned scoliosis.
Positively - I learned how to make my own laundry detergent!!! Pretty cheap, too. Deb

lrmb
08-28-2004, 08:28 PM
Thanks Sue and everyone for your replies, I really appreciate it. I know it's really important to try and figure out where the pain is coming from prior to surgery. (I think the surgeon I previously saw said that he thought the pain was unrelated to the scoliosis because I had very recently had an acute injury which was a "classic" disk injury from lifting a box). Sue, your lumbar curve is a lot worse than mine, but it's interesting to hear of pinched nerve pain. I'm thinking of you in the run up to your surgery.

All the best, Laura