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Thread: Help! I'm in a lot of pain!

  1. #1
    Join Date
    May 2004
    Location
    Cambridge, Canada
    Posts
    15

    Unhappy Help! I'm in a lot of pain!

    Hello,

    My name is Lisa and I am 27 years old. I had surgery for scoliosis when I was 13 years old. I was fused from the back from T4 to L3 (12 vertebrae) and also fused from the front from T4 to T9. My curves were 75 and 55 and due to the severity they did these extensive surgeries. I had some problems when I was younger with sitting and occassional pain with weather changes, etc. On top of that I am a migraine sufferer (runs in the family), which does not help. Then, last April I woke up one day in excrutiating pain. I didn't make to work for almost 15 days in one month! My regular family doctor put me on an anti-inflammatory and a pain killer. He also sent me for an x-ray, which they thought might have showed a loose screw. I had a bone scan which said there was no infection. I've seen two orthopaedic surgeons who have said that the fusion and hardware are fine. Then why am I in so much pain??? I am so frustrated with seeing doctors and they tell me there is nothing wrong, but I am still in so much pain! Am I supposed to feel this much pain? Does anyone out there know of any good doctor's in Canada (Toronto, Hamilton area) that deal with these kinds of situations 14 years after surgery? Every doctor I see is so afraid to touch me, they give me no answers and just tell me it's chronic pain due to the original surgery.

    Lisa

  2. #2
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,797
    Hi Lisa...

    If you were in the U.S., I'd tell you to see another doctor, but I know that isn't an easy option in Canada. If you can afford to come to the U.S. and pay for an examination, you might get a real answer. I'd recommend Dr. Oheneba Boachie in New York City. He routinely treats people with prior scoliosis fusions and can probably help you figure out what is actually causing your pain. He's not inexpensive, but you can help reduce the bill by bringing recent x-rays and other test results with you to the appointment. And, in the meantime, I'd encourage you to keep a pain diary to see if you can figure out any patterns.

    Good luck!

    Regards,
    Linda

  3. #3
    Join Date
    May 2004
    Location
    Cambridge, Canada
    Posts
    15
    Linda,

    Thanks very much for the information. Do you know approximately how expensive this doctor would be? I really don't know much about the US health system and I'm just curious. I already have x-rays, etc. I really appreciate your response. As for any pain patterns, I've already been keeping a diary (since I'm a migraine sufferer anyways) and I've not noticed any difference or patterns. There is no rhyme or reason, it's just always there.

    Thanks!

    Lisa

  4. #4
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,797
    Hi Lisa...

    I've heard people say that it was $600+, but I don't know if that includes x-rays. You should call his office and be sure to tell them that you'll be paying for this appointment out of your own pocket.

    --Linda

  5. #5
    Join Date
    Jun 2004
    Location
    Ireland
    Posts
    35
    Dr. Marcel Dvorak, MD, FRCSC
    D-6 Heather Pavilion
    2733 Heather Street
    Vancouver, BC
    V5Z 3J5
    I've heard some good things about him and he's appearently the first to do the flatback revision surgery in Canada.
    Sins

  6. #6
    Join Date
    May 2004
    Location
    Cambridge, Canada
    Posts
    15
    Thank-you so very much! At this point, I don't care if I have to fly across the country to get some help. I really appreciate it - thanks!

    Lisa

  7. #7
    Join Date
    Mar 2004
    Location
    Oshawa Ontario Canada
    Posts
    55

    toronto areas dr's

    Hi :

    here are the two Dr's I know of in the Toronto area that do adults

    Dr S Ford
    Sunnybrook/Woman's college

    Dr S Lewis
    Toronto Western

    I hope that helps

    You can also go to the Physcians and surgeons of Ontario website and look up other orthopedic specialists

    Nancy
    Nancy

  8. #8
    Join Date
    May 2004
    Location
    Cambridge, Canada
    Posts
    15
    Nancy,

    Thanks for the info on the 2 Toronto docs. Do you know what there specialties are? I'm going to try to get my family doc to refer me to one of them.

    thanks!!

    Lisa

  9. #9
    Join Date
    Mar 2004
    Location
    Oshawa Ontario Canada
    Posts
    55

    specialties

    Hi Lisa:

    They are both orthopedic surgeons. If you go to the Ontario College Of Physcians and Surgeons site you can do a search by specialty or name and get the info on them as to when and where they trained etc and the info on where they are now. Please feel free to email me if there is anything else I can help you with - not that I am the know it all but you never know lol.
    It took me forever to get an app't with Dr Lewis - my GP wrote in Dec '03 and I have a date of Nov 15th '04 but hey at least I got one.


    Nancy
    Nancy

  10. #10
    Join Date
    May 2004
    Location
    Ontario, Canada
    Posts
    9

    A doctor in Ottawa

    Hi there!
    I recently saw Dr. Garth Johnson at the Ottawa Civic Hospital. He is supposed to be one of the best orthopaedic surgeons in Canada, so he may be worth seeing.
    Unfortunately, he is not able to help me at this point in time, but he was able to make recommendations that may alleviate some of my pain as well as suggest some additional tests that may shed some light on why I hurt so much.
    I can understand your frustration as I am going through pretty much the same thing right now. I had my surgery at 14 (fused from L3 to T11, I think). I'm now 26 and have been having pain in my lower back, right hip and down my right leg for over 2 years.
    I've been trying some cranio-sacral therapy recently and it seems to help a little, so that may also be something you can look into.
    Good luck and hang in there!

    Kelli-Ann

  11. #11
    Join Date
    Mar 2004
    Location
    Oshawa Ontario Canada
    Posts
    55

    A couple of questions

    Hi Kelli Ann:

    I have a couple of questions for you

    1. What is cranio sacral therapy involve?

    2. What ideas did he give you for pain reduction?

    thanks for the pointer on the Ottawa Dr but right now I am going to continue the Toronto base as even that is far enough for me to have to deal with. The thing that still annoys me the most is that so many of these Dr's still don't understand the pain involved with scoliosis - don't they listen to their patients? Sometimes you have to wonder. Anyhow once again thanks and do keep in touch in case you get any other ideas.

    Nancy
    Nancy

  12. #12
    Join Date
    May 2004
    Location
    Ontario, Canada
    Posts
    9
    Hi Nancy!

    Craniosacral therapy (CST) is based on the theory that the flow of cerebrospinal fluid (from your cranium to your sacrum) is central to everything that happens in the body. My CST describes it as all of your body parts working together and that when one part is not doing its job, other muscles, tissues, etc. have to take over. It's extremely non-invasive. You don't even have to take your clothes off! The CST just applies light pressure to your body in order to feel where the flow of cerebrospinal fluid is disrupted and you concentrate on your breathing and becoming aware of that area.
    I know it sounds a little odd, but it seems to help. My CST seems to be able to find exactly the areas that I'm having pain in without me telling her and as I relax and concentrate on that area, I can feel the tissues shifting around inside. It's a strange sensation.
    I'm only just beginning to experiment with this, so I'm sure I'm not explaining it very well. Here are a couple of websites that might make more sense: www.craniosacraltherapy.org/
    and upledger.com
    As for the doctor's recommendations, he suggested that I get a bone scan done to show where there is pressure on my bones and a nerve test to determine if there is any nerve damage that is causing the pain down my leg. It may give us some more answers as to where the pain is coming from. He also said that wearing a corset may help to support my back and prevent me from moving in ways that cause damage. I'm supposed to exercise as well because the pain can apparently get worse if your muscles don't stay strong. He suggested swimming, but I really hate swimming. Instead, I'm going to look into taking aquabics since that would also be low impact. I've also developed bursitis in both of my hips because of my back, so I've been getting cortisone shots to alleviate that.
    I haven't gotten the full report yet, so I may know more once that gets here. I saw him at the end of May. I can't believe how long it takes!! Plus, my doctors here won't do anything concerning my back until they see the report from Ottawa. It's enough to make you scream.
    Anyhow, if I think of anything else, I will let you know and please do the same for me. Take care!

    Kelli
    Fused from L3 to T11, Harrington rod inserted, Dec. 1992.
    Now 26 years old and have been having pain for almost 3 years in my lower back, right hip, and down my right leg.

  13. #13
    Join Date
    May 2004
    Location
    Cambridge, Canada
    Posts
    15
    Kelli/Nancy,

    Thanks for the information! It is so great to finally identify with people who are going through the same things as I am. Like Nancy, I am running into many doctors who do not understand why I am having pain. They are treating the effects without finding out the cause. I've resorted to seeing a pain specialist and he didn't even know how to read my x-rays!

    Kelli,
    In response to your swimming recommendation from that doc, my pain specialist actually recommended the same, but since I don't even know how to swim, he suggested a warm pool therapy program. It is different from the aqua fitness programs that most places run. Actually most of them are run by the arthritis society (my insurance company helped me with this one) and the pool is kept warmer than a regular pool. Most pools are at 80 and these ones are usually kept above 90. It is also a lot lighter impact because it is for people with arthritis. I'm just started to test it, so I will let you know how it goes, but so far it's nice. It's a way for me to exercise without killing myself.

    Lisa

  14. #14
    Join Date
    May 2004
    Location
    Ontario, Canada
    Posts
    9
    Hi Lisa

    Thanks for the advice about pool temperature. Someone else mentioned that to me at one point, but I'd forgotten about it. I'm not sure if we have a program like that around here (I'm in Thunder Bay), but I have a guy coming to visit me tomorrow from Sudbury who works for my insurance's rehabilitation program, so he may be able to tell me more about what is available. Please keep me posted on your progress. Good luck!

    Kelli
    Fused from L3 to T11, Harrington rod inserted, Dec. 1992.
    Now 26 years old and have been having pain for almost 3 years in my lower back, right hip, and down my right leg.

  15. #15
    Join Date
    May 2004
    Location
    Cambridge, Canada
    Posts
    15
    Well all,

    I just wanted to update you. It is said that I have osteoarthritis and chronic pain due to the original surgeries. My pain is being managed with medication and I am due to return to work in a week or two. I also go to see if nerve block therapy (shots) will be helpful for me in November. Does anyone else have any experience with that?

    Talk to you all soon!

    Lisa

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