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Thread: Frustrating experience with the surgeon

  1. #1
    Join Date
    Jul 2006
    Location
    British Columbia, Canada
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    35

    Question Frustrating experience with the surgeon

    So I saw the surgeon on Thursday, and it was certainly not what I expected! I had been told by my GP that my curve had increased from 29 to 55 degrees in 5 years, that I had a problematic disc at L5/S1, and to expect spinal fusion surgery. She even told me to plan to take a semester off school to recover. When I saw the surgeon, he said that the curve was 43 degrees, that there was nothing we could do about the disc, and sent me for physiotherapy.

    I've had good and bad experiences with surgeons in terms of their personality, but I have to say I was surprised by how rude he was. I think he was annoyed that I was seeing him because of my "mild" (his words) curve. He was very rough and hasty during the physical exam. I tried to ask him three times why there could have been such a large error between the two readings, and every time he got defensive and said that he was a specalist and that his number was the right one. I did not doubt his number, I just wanted to know WHY the difference? 12 degrees is a very large marin of error.

    He said that all of my pain was coming from the disc problem, and that disc problems are common "because we walk on two legs." Are disc problems really that common in 20 year olds? Also, I do not believe that my scoliosis is painless. I can feel where my spine "curves" to the left and the muscles that align against it are very tight and sore. He finally said as he was walking out the door that in very rare circumstances scoliosis can cause back pain but he didn't think mine was bad enough to.

    Now this isn't bad news; I certainly don't want surgery unless I really need it. I'm going to start the physiotherapy on Monday and I'm going to work hard and I hope it helps. I REALLY want to go back to school in September. But, if I had been told this in June I could have been having physio for all this time! I wouldn't have wasted weeks reading and researching about surgery.

    I'm now kind of worried about the degree of my curve. What is it? Who measured it at 55? I'm going back to my GP to ask, but I think it was a radiologist, and the same one who had measured it five years ago at 29 degrees. I've never heard of such a large margin of error between two readings. Should I get a second opinion? If I did see another surgeon and s/he confirmed the ~43 degree reading, then I would feel a lot better. But what if the curve actually is 55? Or closer to 50? Is 43 really mild? And how are we going to know if it's getting worse every year if we can't agree with the reading within 12 degrees?? This surgeon won't normally be doing the readings.

    Sorry for the long message! Help!!!

    Kathryn

  2. #2
    Join Date
    Aug 2005
    Location
    Illinois
    Posts
    151
    Kathryn, I would definately get a second opinion. Some Drs. are just like that, they can be jerks and others take the time and explain things. It wouldn't be a bad idea to also ask your gp about this. Maybe she will recommend someone else. My curves were 56 degrees and as soon as my surgeon seen my x-rays he thought I needed surgery. Good luck.
    Mattie

  3. #3
    Join Date
    Jul 2006
    Location
    Spring Hill, Florida
    Posts
    358

    Doctors

    Excuse my language but some doctors are real asses ! If you are not happy with the dr, especially how he spoke to you, I think a second opinion is definately warrented with another specialist. If anything just to ease your mind so that you have a better idea what is going on.
    Good LucK!
    jsully
    36 year young cardiac RN
    old curve C 29, T 70, L 50
    new curve C 7, T 23, L 20
    Surgery June 11, UCH, Dr. Cronen T2-L5, posterior
    Revision December 20 L5-S1 with pelvic fixation
    and Osteotomy to L3 at Tampa General Hospital

  4. #4
    Join Date
    May 2006
    Location
    Bucks County, Pa
    Posts
    274
    I would definitely get a second opinion. My surgeon took a lot of time with me during the appointments and the physicians assistant is also wonderful. She has made herself available to me for any questions that have come up. If she doesn't call me back, the person who can answer my question does. Definately keep trying, but the physio won't hurt while you are waiting for a second opinion. I actually had a doctor tell me that my back problem wasn't related to my scoliosis. He then told me to forget about the scoliosis. Needless to say I did not go back to him. Good luck in finding the right treatment.

  5. #5
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,951
    Hi Kathryn...

    Doctors who aren't used to measuring scoliosis curves are usually pretty bad at it. I don't know how it worked in your case, but I'm guessing that your xrays were probably measured originally by a radiologist. Where the lines are drawn can make even more of a difference than what you saw in your case. So, I find myself wondering if you and the scoliosis specialist got off on the wrong foot because he thought you might be questioning his ability???

    I don't know how the system works in Canada, but if you can, it would be good to get a second opinion from another scoliosis specialist. You may want to try from Stephen Lewis in Toronto, as I'm familiar with his training, and trust that his assessment would be accurate.

    Regards,
    Linda

  6. #6
    Join Date
    Jul 2006
    Location
    British Columbia, Canada
    Posts
    35
    Hi Linda,

    He was grumpy from the start of the apointment and I didn't ask him about the difference until near the end. But yes, like I said in my post, I think he was thinking that I was questioning his number. I wasn't disagreeing with him, I just wanted to know WHY the difference. Also, if the same radiologist measures 29 degrees and then 55 degrees, does that not at least show progression? If the surgeon has started at different vertebrae, why could he have not just said that? He wouldn't explain it to me. Toronto is very far from where I live, on Vancouver Island. Hopefully I can find someone closer to me who is knowledgable about scoliosis.

  7. #7
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,951
    Hi...

    Sorry, for some reason I thought I'd read that you were in Ontario. The only person I've heard about near you is Stephen J. Tredwell in Vancouver. You might want to do a search on his name (see Search icon above).

    IF you have an increase from 29 to 55 degrees, that would probably be significant, but there's no way of knowing if that's actually happened. If you're willing to spend $75US, you can get a second opinion here:

    http://www.espine.com/second-opinion.htm

    Regards,
    Linda

  8. #8
    Join Date
    Jul 2006
    Location
    British Columbia, Canada
    Posts
    35
    IF you have an increase from 29 to 55 degrees, that would probably be significant, but there's no way of knowing if that's actually happened.
    What do you mean Linda? Now I am really confused. A radiologist can measure 29 degrees on one x-ray, and then the same radiologist can measure 55 degrees on another x-ray, and that may or may not be significant, or have really occured? How can I track the progression if I can't get an accurate measurement? I won't be seeing this surgeon every year. What should I do?

  9. #9
    Join Date
    May 2005
    Posts
    147
    Ok, everyone...let's get our brains to thinking to see if we can find someone who knows of a doctor in British Columbia or somewhere nearby.

    I would definitely get a second opinion. I agree with asking your GP about a doctor he knows and trusts. Good luck to you! I agree with you that if the same radiologist measured your xrays and there is that much difference, it is good to question. You might ask your GP to show you the xrays and the differences in measurement.

  10. #10
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,951
    I was trying to say that we don't know if the increase is a correct measurement. I would recommend that you try to get to another specialist to get some confirmation of your actual measurement.

    --Linda

  11. #11
    Join Date
    Apr 2005
    Posts
    913
    I also think a second opinion is in order, but I know how long it takes to get appointments in Canada, very frustrating You should also compare your old Xrays with your new ones(by looking at them through light), and that can give you an idea of the curve's progression(although not 100% accurate, but an idea).
    35 y/old female from Montreal, Canada
    Diagnosed with scoliosis(double major) at age 12, wore Boston brace 4 years at least 23 hours a day-curve progressed
    Surgery age 26 for 60 degree curve in Oct. 1997 by Dr.Max Aebi-fused T5 to L2
    Surgery age 28 for a hook removal in Feb. 1999 by Dr.Max Aebi-pain free for 5 years
    Surgery age 34 in Dec.2005 for broken rod replacement, bigger screws and crosslinks added and pseudarthrosis(non union) by Dr. Jean Ouellet

  12. #12
    Join Date
    Jul 2006
    Location
    British Columbia, Canada
    Posts
    35
    Yes you're right sweetness, it takes forever to get an appointment. >.< And I think that Dr. Wahl might be the only surgeon in Victoria so I will probably have to travel to Vancouver. But I don't really mind waiting a few months if I can get a good second opinion. Since I'm not looking at surgery now, the extra time isn't such a big deal.

    Thanks so much for all of your help everyone!

    Kathryn

  13. #13
    Join Date
    May 2006
    Location
    Central PA
    Posts
    31
    I was told that even the way you are standing on a particular day can affect the xray. Each xray tech positions you in a certain way and if you are leaning or off center compared to the previous xray then that would make a difference. This is just what I was told but it makes sense to me. I was also told that even the time of day you have your xrays can make a difference. I think I read that on this forum.

    I had xrays earlier this year and the radiologist from the hospital where I was xrayed said I had a 50 degree curve, however, that was the reading I had got back in 1995 so I knew if couldn't be correct. My family doctor sent an order to have the same xray re-read just in case but it came back the same (not that the radiologist would admit he made a mistake but it was worth a try). I chose to go to a different doc and have new xrays done which came out to 62 degrees by his measurements and was more in line with the changes I've seen over the years.

    I know what you mean though...it's very unsettling when you're not sure. Even my current ortho told me that these readings are usually correct to within 5 degrees...but I feel like 5 degrees is even a big difference when you're trying to determine if it's getting worse or not. It is frustrating but I found the more you try...you just get different numbers. I have had 3 sets of xrays done this year so far in my quest for a correct number...then I realized....I must be crazy getting all those xrays...so I stopped the insanity and picked one doctor and that is who I'm sticking with.
    43 y.o. married w/a 12 and 14 y.o
    62 degree curve T7 - L2 that is now being measured at 54 degrees?????
    Never had surgery/Thinking about it and gathering all the info I can!

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