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Thread: What to do

  1. #1
    Join Date
    Apr 2007
    Location
    Sydney
    Posts
    249

    Unhappy What to do

    Hey folks, me again, and I am not doing well. Today my lumbar pain was so bad I had sweat rolling off my forehead. Also had this numbing and tingling sensation down my left leg, boy, that feelling is terrible. I just dont know what else I can do. My surgeon sent me a letter from my appointment 3 months ago stating that he believes surgery would not offer me any reliable pain relief and on that basis does not recommend surgery unless all other options have been exhausted. I am not sure what else i can do now with alternative therapies. I have been swimming heaps and getting remedial massages plus chiro treatment, all with only brief relief. This lumbar curve is baaad, the muscle on the left side is constantly rock hard, swollen and very sore and from my waist to the top of my head is always aching. I dont see how any therapies would help with that.
    I really dont want to keep hassling my surgeon, but he did say in his letter that if i get a worsening in my pain to go back and see him. I just think he will think that I have not given the recommended therapies enough time to work, but I know my body and can tell they are not going to work because they havnt in the past and are not now. I feel my pain is getting worse, evident aswell as i am popping constantly codeine for some relief. I put up some pics of xrays, feel free to check em out and tell me what you think.

    I think i am losing my mind with all this, I am worried what it might come too, any advice, as usual, will be much appreciated.

  2. #2
    Join Date
    Jul 2008
    Posts
    407
    Jimbo,

    Sorry to hear you are having problems.

    Have you had an MRI done to see if there are any pinched nerves? The tingling down the leg makes me think that is a problem there.

    For the rock hard back, do you have anyone that can give you massages? I need a massage every 2 or 3 days or the knots in my back start causing lots of pain. Its kind of a circular problem, my lower back pain causes knotting, which causes further pain, after the massage we rinse and repeat constantly.

    Brad
    Surgeries July 26th & August 3rd 1983 (12 years old)
    Still have 57 degree curve
    2 Harrington rods
    Luque method used
    Dr David Bradford
    Twin Cities Scoliosis Center
    Preop xray (with brace on)
    Postop xray

  3. #3
    Join Date
    Sep 2008
    Location
    Colorado
    Posts
    94

    Just a thought!

    I am 32 have scoliosis and had four surgeries. But I also had a friend with scoliosis who is 60 and she was having similar problems they found it to be associated not with her back but fibromyalgia. Just an idea to look at a specialist that deals with fibromyalgia. They helped her tremendously.

    Auge
    T4 - L4 fusion 1999
    66 degrees thoracic
    58 degrees lumbar

  4. #4
    Join Date
    May 2008
    Location
    Central NJ
    Posts
    1,956
    Jimbo,

    I'm sorry that you're having so much pain. Maybe you should go back to the surgeon since he said to do so if you were in more pain. I hope you can get some relief in the mean time.
    __________________________________________
    Debbe - 50 yrs old

    Milwalkee Brace 1976 - 79
    Told by Dr. my curve would never progress

    Surgery 10/15/08 in NYC by Dr. Michael Neuwirth
    Pre-Surgury Thorasic: 66 degrees
    Pre-Surgery Lumbar: 66 degrees

    Post-Surgery Thorasic: 34 degrees
    Post-Surgery Lumbar: 22 degrees

  5. #5
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,794
    Hi Jimbo...

    Since your xrays were taken on a short cassette machine, I suspect that your doctor may not treat a lot of scoliosis patients (although it's possible that things are done differently down under). If your surgeon isn't listed here (or maybe even if s/he is):

    http://www.srs.org/find/index.php?mo...lia&specialty=

    ... you might want to consider getting a second opinion.

    Best of luck.

    Regards,
    Linda

  6. #6
    Join Date
    May 2009
    Location
    Topeka, KS
    Posts
    397
    Please do not lose your mind. If you do - we all will. We are here for you - vent as much and as often as you can.
    I, too, am in awful pain, have problems swallowing and (get this) even have experiended 2 episodes of not being able to hold (shall we say) it when on the way to hte bathroom. I hate to even mention that. Like the swallowing roblems wasn't enough. What other surprises are there yet to experience. I'm not one to look forward to yet another surgery, but this is absdolutely driving me nuts. Not one person should experiencde this much pain - let alone these other problems. I see surgeon next week - so hohpefully he has some tricks up his sleeve.

    So, do not feel alone here. I understand that you have already had surgery?" But, whatever pain - we are all in this together....

    Keep hanging in there....

  7. #7
    Join Date
    May 2009
    Location
    Adelaide, Australia
    Posts
    424

    Thumbs up

    Hi Jimbo, just had a look at your x-rays, bit hard to see, but looks similar to mine. Have you checked the Scoliosis Australia site? There are surgeons listed here that you may want to consult with. As you will see by my signature, my surgeon was done by Dr. Hall-assisted by Dr. Cain both on the list for South Australia. Good Luck!
    Vali
    44 years young! now 45
    Surgery - June 1st, 2009
    Dr David Hall - Adelaide Spine Clinic
    St. Andrews Hospital, Adelaide, South Australia
    Pre-op curve - 58 degree lumbar
    Post -op - 5 degrees
    T11 - S1 Posterior
    L4/5 - L5/S1 Anterior Fusion

  8. #8
    Join Date
    May 2009
    Posts
    3,745
    Hi Jimbo
    i am not sure i understand your situation...i believe you have never had surgery...is that correct? have you been to pain management doctors? if you cannot have surgery, perhaps injections of some sort might help you?

    have you seen other surgeons for other opinions?

    not trying to upset you, just want to understand what you are dealing with...?

    hope you start to feel better soon...

    jess

  9. #9
    Join Date
    Oct 2008
    Location
    Sunshine Coast, Queensland, Australia
    Posts
    3,261
    I too, think it might be time for a second opinion, if you haven't already done so, Jimbo. I would highly recommend my surgeon and I know he has had some patients come up from Sydney. It's a matter of getting your GP to refer you then send up your xrays for him to see. He will then schedule an appt. I know, easier said than done when you live interstate.

    PM me if you would like his contact details.
    Surgery March 3, 2009 at almost 58, now 63.
    Dr. Askin, Brisbane, Australia
    T4-Pelvis, Posterior only
    Osteotomies and Laminectomies
    Was 68 degrees, now 22 and pain free

  10. #10
    Join Date
    Oct 2007
    Location
    Indiana
    Posts
    1,974
    This is a dated post-- Jimbo wrote it in Sept. 2008. It may not be pertinent anymore... maybe Jimbo will let us know.
    66 and still heartbroken...
    2007 52 w/ severe lumbar stenosis & L2L3 lateral listhesis (side shift)
    5/4/07 posterior spinal fusion T2-L4 w/ laminectomies and osteotomies @L2L3, L3L4
    Dr. Kim Hammerberg, Rush Univ. Medical Center in Chicago

    Corrected to 15
    2014 DXd w/CMT (type 2)

    Click to view my pics: pics of scoli x-rays digital x-rays, and pics of me

  11. #11
    Join Date
    Oct 2008
    Location
    Sunshine Coast, Queensland, Australia
    Posts
    3,261
    Oops!

    Hope things are much improved now!
    Surgery March 3, 2009 at almost 58, now 63.
    Dr. Askin, Brisbane, Australia
    T4-Pelvis, Posterior only
    Osteotomies and Laminectomies
    Was 68 degrees, now 22 and pain free

  12. #12
    Join Date
    May 2009
    Location
    Topeka, KS
    Posts
    397
    Go through the sweaty forehead all the time myself. So, nothing unusual huh? Gosh, nice to hearj of someone else in that much pain....hang in there.

  13. #13
    Join Date
    Apr 2007
    Location
    Sydney
    Posts
    249
    Quote Originally Posted by JenniferG View Post
    I too, think it might be time for a second opinion, if you haven't already done so, Jimbo. I would highly recommend my surgeon and I know he has had some patients come up from Sydney. It's a matter of getting your GP to refer you then send up your xrays for him to see. He will then schedule an appt. I know, easier said than done when you live interstate.

    PM me if you would like his contact details.
    Thanks Jen, but I have found my surgeon

    I love Queensland though, I might go there for a trip after I recover.

  14. #14
    Join Date
    May 2009
    Posts
    3,745
    Hi Jim
    you said your surgeon said injections "are not an option for you"...are you sure...it might be worth a trip to a skilled pain management doctor to hear why or why not...cause i just dont buy it...my muscle pain on upper 40 degree (lesser) curve is stopped in its tracks..literally...with botox shots...every 4-6 months...my lower lumbar is 63 degrees & am considering T11-S1 & L4-S1 front & back surgery for 2010...in meantime, i refuse to give up on pain management...after ineffective epidurals, facet block & nerve ablation (or very little effect i should say) i got real relief with sacroiliac injections....dont know for how long, but am deeply grateful for ANY pain relief i can get from anywhere!!!!

    also, is that a sciatica you have, or nerve pain/damage...have you tried enuf doctors & second opinion to be sure there is no (even temporary) help for you? i would just encourage you to keep an open mind & try another doctor for the pain...i mean, if they dont operate, what option is left?

    i will probably have surgery in the end, but for now i gratefully accept whatever help i can get!!!

    best of luck to you
    jess

  15. #15
    Join Date
    Jun 2009
    Location
    Tucson, Arizona
    Posts
    15

    Holding it

    Quote Originally Posted by RitaR View Post
    Please do not lose your mind. If you do - we all will. We are here for you - vent as much and as often as you can.
    I, too, am in awful pain, have problems swallowing and (get this) even have experiended 2 episodes of not being able to hold (shall we say) it when on the way to hte bathroom. I hate to even mention that. Like the swallowing roblems wasn't enough. What other surprises are there yet to experience. I'm not one to look forward to yet another surgery, but this is absdolutely driving me nuts. Not one person should experiencde this much pain - let alone these other problems. I see surgeon next week - so hohpefully he has some tricks up his sleeve.

    So, do not feel alone here. I understand that you have already had surgery?" But, whatever pain - we are all in this together....

    Keep hanging in there....
    Hello, Just read your posting of last August and noticed I have a smiliar problem with 'holding it' on way to bathroom. Arriving home, just opening the car door seems to start the urge. I even had an 'accident' recently while at a dinner party and was so embarrased I nearly left at once. So, are you saying this is related in some way to the scoliosis? Since my diagnosis (28 degree curve) many other problems have arisen but perhaps they are related to aging.
    I don't know, but this incontenence is very worrying and don't know what to do about it. I told my doctor but he doesn't give, or know any remedy. If it is due to scoli, then I'll take it as just another by product. WOuld be interested in your opinion, but since it's nearly a year ago, perhaps you have conquered the problem. Thanx. Richka

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