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Thread: Disc Degeneration - Need Dr in Ontario

  1. #1
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    Jun 2005
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    Waterloo, ON
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    Disc Degeneration - Need Dr in Ontario

    I'm so glad I've found this web-site!! I thought I was alone out there. I had CD rods (similar to Harrington rods) and fusion in January of 1986 the full length of my back, with 2 vertebrae at the bottom remaining unfused to give me mobility. This corrected my scoliosis and has given me almost 20 years of a wonderful life, practically pain-free. My Dr., John Kostiak moved from Toronto, Ontario to Johns Hopkins Hospital in Baltimore shortly after my surgery, leaving me with no one to go to for check ups.

    Recently, now at age 50, I've been having tingling in my left leg, and lower back pain when doing almost anything. X-rays have shown forward sliding disc of L5 in relation to S1. There is narrowing of disc space from L2 to S1. I have mid-lumbar rotoscoliosis, and moderate disc degeneration from L2 to L5 and advanced from L5 to S1. (this is all from the x-ray report, don't know what it really means...) Has anyone had similar problems? I've been reading the web-site and wonder if artificial disc replacement works. Or any other experiences or advice?

    And here's a question that I need help on quickly. Does anyone know of a good doctor in Southern Ontario? I've been waiting over a month for my family doctor to refer me to someone. There is an Orthopedic Clinic in London Ontario but the waiting list to even get an appt. is unreal. And who knows if they even have a scoliosis specialist at that Clinic? (oh the traumas of Canadian Healthcare...) Thanks to anyone who responds.

  2. #2
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    Hi Carol...

    I'm going through similar problems. :-( I have an appointment on July 13th to discuss the possibility of extending my fusion.

    There's another discussion on one of these forums about Dr. Stephen Lewis in Toronto. He's got excellent credentials, and has confirmed that he routinely treats patients with prior scoliosis fusions.

    Best of luck in finding someone to help.

    Regards,
    Linda

    P.S. For the record, C-D rods aren't all that similar to Harrington rods. Harrington rods were attached to the spine (usually without any bends) at the top and the bottom. C-D rods were the first of what are classified as universal rods, which are still pretty much the gold standard. Universal rods are attached at various levels to the spine, and are bent to match the normal kyphosis and lordosis of our spines.

  3. #3
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    Response - C-D rods

    Thanks Linda for the info. I'd be interested to know what your doctor recommends after your visit July 13. And thanks for the tip on Dr. Lewis in Toronto. I'm going to follow up on that.

    As for the difference between C-D and Harrington rods, I find that quite interesting. No one has ever explained it to me. My surgery was to correct a 54 degree upper and 46 degree lower curve when I had the surgery done in 1986. In my teenage years I wore a Milwaukee brace which slowed down the curve somewhat. But after 2 pregnancies in my 20's the curves developed more significantly. So I'm pleased with the C-D rods thus far, only the disc degeneration below the rods/fusion are where the pain is now.

    Best of luck to you too with your doctor.

  4. #4
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    Hi Linda...

    I would like to ask you for your help in case you would know who is a good ortho in Montreal, Quebec, Canada. I know you are from the US and didn't want to bother you and didn't know if you had any info on Canadian orthos, but since you know about Toronto, I thought I'd give it a try. I think I'm seeing the best one, his name is Dr. John Ouellet, and my ortho that I've already seen is Dr. Gilles Maurais. I had surgery from Dr. Max Aebi who was considered to be one of the tops in the world, as he went back to Switzerland, don't know if you ever heard of him? But I know that could be just talk from the medical field.

  5. #5
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    Hi...

    I couldn't find any educational references for Dr. Ouellet. It did seem that most of what I found referred to Dr. Ouellet as a pediatric surgeon. So, you might want to check to be sure he's got enough experience in adult revision surgery.

    I also found this list of of Members of the Quebec Scoliosis Society. Thought it might be a useful resource:

    Max Aebi, M.D.
    Vincent Arlet, M.D.
    Thierry Benaroch, M.D.
    François Cabana, M.D.
    Marie-Andrée Cantin, M.D.
    André Desjardins, M.D.
    Julien Dionne, M.D.
    Morris Duhaime, M.D.
    François Fassier, M.D.
    Roger Gallien, M.D.
    André Ghibely, M.D.
    Guy Grimard, M.D.
    Stéphane Guay, M.D.
    Reggie Hamdy, M.D.
    Chantal Janelle, M.D.
    Peter Jarzem, M.D.
    Alain Jodoin, M.D.
    Hubert Labelle, M.D.
    Gaétan Langlois, M.D.
    Patrick Loisel, M.D.
    Dante Marchesi, M.D.
    Gilles Maurais, M.D.
    Alain Moreau, Ph.D.
    Pierre Mercier, M.D.
    Patrice Montmigny, M.D.
    Benoit Morin, M.D.
    Nicholas Newman, M.D.
    Jean Ouellet, M.D.
    Benoit Poitras, M.D.
    Charles-Hilaires Rivard, M.D.
    Jean Rousseau, M.D.
    Jean-François Roy, M.D.
    Constantin Stanciu, M.D.
    Thomas Steffen, M.D.
    Chantal Théorêt, M.D.
    Yvan St-Cyr, M.D

    I honestly know very little about Canadian specialists. Sorry that I couldn't be of more help. Best of luck in finding the right surgeon.

    Regards,
    Linda

  6. #6
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    Thank you for that list Linda, and yes I just found out two days ago that Dr.Ouellet was a pediatric surgeon and he has replaced Dr.Max Aebi who was my surgeon, so I will check out what he's about, and compare him to my ortho, Dr. Maurais

  7. #7
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    Hi Carol....

    Thought you might want to know the outcome of my appoinitment today.

    Dr. Hu thinks we should fuse just L3-L4 at this time. Unfortunately, it means removing all of my current implants and replacing them, which I'm not very happy about. But, she says that there is no fool-proof way to attach an extension system to C-D rods. Unfortunately, removing C-D rods is a lot of work, as the hooks that attach the rods to the spine are locked down on the rods with no way of unlocking them. So, they apparently have to cut the rods between every hook, and then pull the hook out of the bone. (Apparently, the inventors just didn't foresee the need to ever remove these implants.) She thinks she can do everything from the back (yeah!! finally some good news), but that it will probably be a long surgery.

    Because she knows I'm concerned about preserving levels, instead of an additional fusion level (L4-L5), Dr. Hu thinks a new artificial disc system on the horizon might be appropriate. This artificial disc (Kineflex - http://www.spinal-motion.com/) is all metal, and thus would not be at risk of wearing out like they think the current artificial discs may be, when placed below a long fusion. Dr. Hu is also proposing a small decompression at L4-L5 to relieve my leg pain, but I'm concerned about the possibility that it might destabilize my spine, so I think I may opt to live with the leg pain for a few more years. We also talked about the possibility of extending my fusion up, as I have junctional kyphosis caused by my original surgery. Since I'm not really anxious to have the fusion extended higher, I'm going to try physical therapy for awhile to see if I can condition myself to keep my shoulders back.

    Best of luck finding someone to help you.

    Regards,
    Linda

  8. #8
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    May 2005
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    19

    I'm intrigued

    Linda,

    I am intrigued by your news and glad that you have had an opportunity to talk with Dr. Hu again. If you can, I would like to know a little more detail about why she thinks this artificial disc will work for you. Is it officially approved or will you be footing the entire bill? Are there any circumstances that make you a more likely candidate than someone with a similar situation (longer/shorter fusion, condition of unfused portion of the spine, etc.)?

    Thank you for posting.

    kam

  9. #9
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    Hi Kam...

    The Kineflex isn't approved, and I think it's just about to start trials in the U.S. So, it will be several years before we know anything. Dr. Hu knows that I'm desperately trying to save the L5-S1 joint. If she fuses both L3-L4 and L4-L5, I'll almost certainly have to have L5-S1 fused at some time in the future since the L5 vertebra doesn't sit squarly on top of S1. Dr. Hu believes that the Charite and ProDisc artificial discs may not be appropriate for people with long fusions, as they don't know how they'll wear with the additional force from above. Dr. Hu mentioned that she has one patient who really wants one of the current artificial discs at the bottom of her fusion, and is willing to take the risks. Apparently her insurance company has said absolutely not, so they're trying for a compassionate care exemption so they can get the disc for free. Anyway, Dr. Hu feels that the metal disc may be appropropriate for people with long fusions, as they think it would take much longer to wear out than the current polyethylene replacement discs.

    Hope that explains it.

    Regards,
    Linda

  10. #10
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    Jul 2005
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    Linda, what were your original symptoms? whenever i lean or reach or bend i feel it in my lower back. my left foot falls asleep and gets numb. also my shoulders are always cramped up or i have a sharpish pain under my left? did you experience similar?

  11. #11
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    Dear Linda,

    Thanks for posting the details of your appointment. It's good to know the UCSF people are starting to do artificial disk trials with scoli people... or have they been doing it a while?

    Just to clarify about the Kineflex disk: in your case, you could go ahead immediately with fusion L3-L4 but you would have to wait a few years for the Kineflex - or would you be able to go in the trial?

    Do keep us posted on what's happening. Sincerely, Laura
    30y/o
    Upper curve around 55
    Lower curve around 35

  12. #12
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    Hi Laura...

    I don't think the trial parameters have yet been set, so I don't know whether they'll include people with prior fusions (the other lumbar disc replacements specifically excluded people with prior fusions).

    And, I don't think UCSF is going to routinely suggest that people with scoliosis, whether they have a prior fusion or not, have an artificial disc placed. I got the impression from Dr. Hu that she had one patient who was really pushing for the artificial disc, and so she's trying to make that happen.

    Regards,
    Linda

  13. #13
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    Quote Originally Posted by BeachinIt66
    Linda, what were your original symptoms? whenever i lean or reach or bend i feel it in my lower back. my left foot falls asleep and gets numb. also my shoulders are always cramped up or i have a sharpish pain under my left? did you experience similar?
    I've had lower back pain for about 8 years, which only occurs if I stand in one place for more than about 5-10 minutes, or if I walk slowly. After I'd had the pain for about 6 months, I went in for an x-ray that showed degeneration in the L3-L4 disc, the first below my fusion. It's the same pain I had prior to my original fusion. In addition, I have dull pain down my left leg that comes and goes. Usually, all of the my pain can be relieved by lying down for 5-100 minutes.

    For the record, the CT-myleogram of my lumbar spine showed:

    L3/L4-There is facet arthropathy, right greater than left along with a centric osteophytic spurring on the right which results in marked right neural foraminal narrowing. There is a moderate degree of canal stenosis.

    L4/L5-There is a diffuse disk bulge with a left paracentral component which contacts the exiting left L4 nerve root. This along with ligamentum flavum hypertrophy results in moderate canal stenosis.

    L5/S1-There is a focal central disk protrusion but without evidence of neural foraminal narrowing or bony canal stenosis.

    Entirely separate is upper back pain that comes and goes. It changes so much that it's impossible to describe. Mostly it just feels like I'm fatigued.

    --Linda

  14. #14
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    Jun 2005
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    Waterloo, ON
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    Hi Linda,
    Thanks for sharing the outcome of your visit to Dr. Hu - very interesting. It sounds like it would be a horrendous surgery to go through, to remove C-D rods, but good to know that now.
    It's interesting that you have the same leg pain I have. I cannot stand or walk very far without numbness in my left leg, as well as lower back pain, and it's getting worse quickly.
    So interesting to hear about the new artificial disc system. Is there a web-site that would outline the disc location numbers (ie L3, L4) ? I would like to visualize your fusion location compared to where I have the fusion.
    Sorry I did not respond last week, but I was waiting until I visited my family doctor once again, today. He did send a referral to Dr. Lewis at Toronto Western on July 7th, per your suggestion. So far no response back. There is a definite lack of specialists in southern Ontario. My dr. said he could refer me to any other specialist I find, but he's leaving it to me to tell him who I want to go to. Could take over a year for an appt.
    In the meantime, my family dr. is prescribing Voltaren and Tegretol for pain. I've looked at details on the internet for these and hesitate to take them. Have you ever heard of them? Or what other medication works for this type of pain? He did suggest physiotherapy, but when the least little thing causes pain, just the thought of physio is hard to work with.
    It's hard to know only surgery would help the pain, yet I can't even talk to a specialist to give me options.

  15. #15
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    Lightbulb voltaren/tegretol

    These meds are;VOLTAREN(DICLOFENAC) is a non-steroidal anti-inflammatory prescription. It really helped my husband with sciatica and we saw no side effects.

    TEGRETOL(CARBAMAZINE) is an anti-seizure medication that is also used for nerve pain. We have something similar in the US that I took and it really helped for my nerve pain.

    You can always try it- if it works you will be grateful.

    Karen
    Original scoliosis surgery 1956 T-4 to L-2 ~100 degree thoracic (triple)curves at age 14. NO hardware-lost correction.
    Anterior/posterior revision T-4 to Sacrum in 2002, age 60, by Dr. Boachie-Adjei @Hospital for Special Surgery, NY = 50% correction

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