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Thread: Introduction and Kyphosis Surgery

  1. #1
    Join Date
    Dec 2011
    Posts
    2

    Introduction and Kyphosis Surgery

    Hello, my name is Amy, and I'm a new member of these forums. I have been reading for quite some time, and recently decided to join. I wanted to start off by saying thank you, as this forum has been a huge support system for me.

    I have Kyphosis, which I first noticed in my early teen years. I had one appointment with a back doctor who was going to refer me to the Sick Kids Hospital here in Toronto, Ontario, but I'm not sure how communication fell by the wayside and nothing really came of it.

    In recent years (I am now 20), I feel as if the curve has progressed, and my pain has definitely increased. Standing for long periods, as well as sitting for long periods often results in pain and at times numbness. As a university student, sitting in class for three hours at a time often has me shifting this way and that, trying to deal with the back pain.

    The physical pain is only part of it, I will admit. My curve has definitely taken a huge toll on my self-esteem and self-confidence to the point where I feel as if I have none. I'm not comfortable with how I look, and it leads me to constantly question how much others are noticing my "deformity" (don't mean to offend anyone else with Kyphosis - it's just how I refer to myself).

    I talked to my family doctor last month and had X-rays done. I also asked for a referral to Dr. Stephen Lewis, a highly recommended surgeon here in Toronto.

    Long story short, I've been informed that the wait time for an initial consultation with a specialist is a year plus. That's not including the subsequent wait for surgery if I qualify for one. I should make it clear that I've been dwelling on this for years, and if given the option to have surgery, I will take it.

    Another option that I've recently become aware of is having my surgery done in the United States, with a much lesser wait. This is what I need advice on. I don't think I can wait what looks like 1.5 to 2 years to have surgery here at home - this is taking my schooling and general state of mind into account. Would it be, for lack of better word, stupid to have spinal fusion surgery in the US (I live in Canada)? Obviously I would talk to the surgeon in question in detail before proceeding, and look up his/her experience beforehand. I am aware of the expense associated with doing this in the US, as OHIP will not cover this surgery. Travel expenses would also be significant. And I would be lying if I said I wasn't concerned about the post-op checkups and contingencies of whether something goes wrong. On the other hand, the US is not too far away and people have surgeries abroad all the time.

    So please, provide some advice. Any and all input is welcome. Thank you all so much again.

    Finally mustered up the courage to attach some pictures of my back.

    ETA: Sorry that this post is all over the place; it is reflective of the confusing thoughts running through my head.
    Attached Images Attached Images
    Last edited by Aimz; 12-21-2011 at 09:51 PM.

  2. #2
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,801
    Hi Aimz...

    Welcome.

    Since you're in Toronto, New York city is probably your best bet, since they have an abundance of well regarded surgeons. The surgeons who I hear most about in NYC are Oheneba Boachie, Frank Schwab, Christopher Hamill, Baron Lonner, and Michael Neuwirth. I'd be interested in hearing what you find out in terms of how much they think it will cost. I'm guessing that they'll expect you to put up $250,000-$500,000 for the works.

    Regards,
    Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Dilbert
    I'm sarcastic... what's your super power? --Unknown
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
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    If you've signed up and are having trouble posting, please check your spam folder. An email was sent to the email address which you subscribed. You have to follow the instructions in that email. Done that and still having trouble posting? Contact Joe O'Brien at jpobrien@scoliosis.org.

  3. #3
    Join Date
    Apr 2010
    Location
    Waterloo, IL
    Posts
    1,691
    Amy,
    Welcome to the forum. I can see why you don't want to wait to have the surgery since you are in pain. I had one of the best surgeons in the United States (Dr. Lenke) and waited 13 months for my surgery, however, I wasn't in pain so it didn't bother me to wait. Whether you get surgery in Canada or the United States, make sure you have one of the best surgeons for scolisosis. Good luck with your decisions.
    Karen

    Surgery-Jan. 5, 2011-Dr. Lenke
    Fusion T-4-sacrum-2 cages/5 osteotomies
    70 degree thoracolumbar corrected to 25
    Rib Hump-GONE!
    Age-60 at the time of surgery
    Now 66
    Avid Golfer & Tap Dancer
    Retired Kdgn. Teacher

    See photobucket link for:
    Video of my 1st Day of Golf Post-Op-3/02/12-Bradenton, FL
    Before and After Picture of back 1/7/11
    tap dancing picture at 10 mos. post op 11/11/11-I'm the one on the right.
    http://s1119.photobucket.com/albums/k630/pottoff2/

  4. #4
    Join Date
    Mar 2010
    Posts
    2,755
    Welcome Amy,

    I have to agree with the other posters. It's very difficult to come up with that kind of cash. However, if you are able to do it, then take Linda's advice and go to someone on her list. She works with scoli specialists and knows all the best ones.

    As far as your appearance goes, yes you can see the kyphosis, especally in the bending photo. It is apparent that it is probably severe enough to get it fixed (I'm by no means trying to give medical advice). But in your sitting or standing photos, it doesn't seem that obvious, especially if you dress it down. I know how scoliosis hurts the self-esteem, especially with someone your age. I used to run around with one shoulder much higher than the other and I had to alter many of my cloths to fit. I especially had to watch the necklines, otherwise things would fall off one shoulder. I have the opposite problem as you. I have hypokyphosis which makes a dip between my shoulder blades. My curves are progressing and so is the pain, but one curve has balanced out the other and now my side sticks out instead of my shoulder being raised. I'm 43 and a little self-conscious as well, so I do understand.

    I think the pain issue is a big issue. You are way too young to have to be in pain. I don't know if you can get in to see another doctor in a different province. I'm not Canadian. I'm in the U.S. so I'm not that familiar with the Canadian medical system. I have seen other people from your country make that suggestion to others, though. If you can do that, it might be helpful. I would definitely make sure you see a scoliosis specialist, though. You don't want just anyone working on your back. I hope someone else, especially from Canada, chimes in with some good advice.

    It seems nothing is easy when you are dealing with health care systems. We have private insurances here, but many of us have these lovely things called HMO's that limit who we can see. So even though we can get in reletively quickly, we can't just go where we want. My insurance will only let me see one scoli specialist and will not allow me to get a second opinion. We pay about $830 a month for our insurance and still have to pay part of the medical bills besides. It's crazy! That is a full third of our income. My family is what we call "insurance poor". But with my health condition, we have no choice. There's no way I can come up with 1/4 to 1/2 a million $$. One guy's medical bill was over $1,000,000! I'm not trying to scare you, but this stuff isn't cheap and you can't afford to cut corners with a less than top notch doctor when you are dealing with your spine.

    I wish you the very best and hope I haven't offended you by my statements. Sometimes, even though I am well meaning, I accidentally offend people. It really makes me sad when that happens. So know that my thoughts are with the best of intentions to be encouraging but honest at the same time. Take Care and I hope you can find resolution in getting in to see a doctor.

  5. #5
    Join Date
    Mar 2010
    Posts
    2,755
    Hello, Amy. It's me again. I don't want you to think your situation is hopeless, because I know that feeling. I came up with an idea. Would it be possible for you to come to the States for an evaluation? I don't think most doctors charge over $500 or in that range. At least with that, you will have x-rays and an expert opinion of your condition and what needs to be done. That might give you some peace of mind in just knowing how serious your back is or isn't and if you need surgery right away. I'm also wondering if you took that information back to your doctor if it would expedite things for you in your own country. Also, is there any way you can get your primary care doctor to give you some form of pain management? I can't imagine them just letting you suffer. Anyway, that is what I've come up with as I've been thinking about you and your situation. Take Care.

  6. #6
    Join Date
    Dec 2011
    Location
    Toronto
    Posts
    27
    Hi Amy,
    I have been lurking in this forum for a long time and I had to respond to your post, so I signed up and here is my response (unfortunately the sign-up process took longer than expected so, the delay). Please note that I am not trying to provide you with any medical advice here, just my experience.

    I am a 43 year old male with congenital scoliosis/kyphosis with a 72 deg Thoraco-lumbar left convex scoliosis curve. My scoliosis had never been diagnosed (probably because in my country of birth no-one cared about it and I was also quite obese so, I guess people thought I was weirdly built anyway ) I found about about my scoliosis because of pain and neurological symptoms that I have been experiencing for the last year or so through MRI's/XRays etc.

    I am also located in Toronto Canada and faced the same dilemma that you seem to be facing.
    In July of 2011, I was not able to get a referral to Dr Stephen Lewis probably because my Family doctor did not make a good case for referral ( I guess he just sent a one line referral to Dr Lewis with Back-pain as the chief complaint). Needless to say I got a letter from Dr Lewis's office saying that he is unable to take my case because he is too busy.
    So in late July 2011, I got very frustrated and started looking to US for help. I reached out to Dr Boachie's office (HSS) for an appointment and I had a consult with Dr Boachie in late August in NY. It was all self paid (I think 450 USD for the appointment and another 500 USD for the X-Rays) paid at the time of the consult.
    I found Boachie to be very calm and nice and he clearly recommended surgery. He was not able to identify the cause of the back-pain and neurological problems from my MRI's and CT scans, he recommended that I get a CT Myelogram done to get a better idea of the neurological issues.
    I also got an idea of the cost from his office (The doctor fee is close to 50 K + hospitalization of 250 K for a uneventful surgery and recovery). I would expect the real cost to be in the amount closer to 400 K to a Million USD depending on how things go. No offense, US medical bills are death by a thousand cuts
    OHIP does not pay for this type of a surgery from the US as this is not an emergency surgery and Canadian doctors have the ability to perform this surgery.
    Considering these costs, I decided that I cannot get the surgery in the US.
    My reasoning was ..
    No point having a perfect back, but being crushed under the burden of this kind of a debt.
    Even the perfect back is not a guarantee because this is a very complicated surgery and I have seen people needing revision surgeries despite going to top surgeons in the world.

    So I decided to take my chances in Canada. Armed with Dr Boachie's report, I changed my Family doctor and again sent a referral to Dr Stephen Lewis.
    My doctor sent the referral in middle of September and I have an appointment with Dr Lewis in May 2012. Apparently Dr Lewis's office takes about 3 months to triage a referral and I got the details of my referral date in end of November 2011. BTW you should directly call Doctor Lewis's office. I found his office staff to be nice and responsive.

    Meanwhile I also have been hearing good things about Dr Dana Wilson from Trillium. I have heard that he is an excellent and very experienced spine surgeon and he has performed challenging scoliosis revision surgeries including Osteotomies. I have also heard of him doing an excellent job on a 60+ year old woman with severe Kyphosis with a good outcome.
    I decided to reach-out to his office to consult with him and I have an appointment with him on end of January 2012. I will make up my mind if I want to go ahead with him based on how comfortable I feel with the consult.
    So this is where I am.
    With respect to your kyphosis surgery, the good news that I can think of is that you are very young and, generally the younger you are, the better is the outcome in terms of healing and lack of complications.

    I understand that you are worried from cosmetic perspective etc, but from my perspective, I think the pain that you are experiencing and the inability to sit from longer duration without squirming/fidgeting is something that I can totally empathize with. I wish you good luck in your path and feel free to reach out to me through personal message etc if you need to talk. After all we are all together in this Fellowship of the Spine
    Last edited by rajma; 10-19-2012 at 08:49 AM.

  7. #7
    Join Date
    May 2009
    Posts
    3,745
    well, of course it would be expensive to come to the US from another
    country and have surgery here....
    those of us who live in the US most often have insurance that pays for the
    surgery....
    Boachie does not take my insurance, so i coudn't go to him either, even being in America
    and having insurance....
    i would not expect to go to Canada from America and have any organization pay for
    my surgery there...

    my sister lives in Montreal....been there some 35 years now....
    the problem seems to be exactly WHAT is considered an "emergency" there....

    jess

  8. #8
    Join Date
    Dec 2011
    Location
    Toronto
    Posts
    27
    Jess,
    I agree that getting care across countries is really not an easy proposition unless one is very well off. When I mentioned death by thousand cuts, I was talking about my previous experiences with the medical system in the US. I lived in US for 5+ years and had pretty good employer insurance. I still recollect getting explanation of benefits letters from Blue Cross. I really felt, I needed a PhD to decipher it in terms of what was covered and what I needed to pay.
    I have a lot of respect for US Medical technology and establishment, so please don't take offense.
    You are exactly right wrt Canada. It has its own challenges in terms of wait times and timely care.

  9. #9
    Join Date
    May 2009
    Posts
    3,745
    well, the insurance situation in this country has been going downhill
    for years....
    i remember way back, when doctors actually made house calls, and the bill
    was paid when it was paid, and the family doctor was really a family doctor...
    and those memories are from growing up in NYC!

    i guess HMO's were supposed to make things better, but then charges
    became ludicrously high, i suppose because hospitals knew they would
    only get paid a percentage of what they charged the insurance companies...
    problem is, when an individual is paying instead of insurance company, we are
    expected to pay the full amount, like $300 for an aspirin!
    it is all a shame!

    my sister likes the insurance ways of Canada,,but then again, her back is OK...
    i am sorry you have such long waits for attention to scoliosis and other
    spinal problems!


    jess

  10. #10
    Join Date
    Dec 2011
    Posts
    2
    Hi all,

    I thank each and every one of you for your replies. I'm sorry I couldn't reply sooner - the holidays as well as school-related things took up the majority of my time. I will be replying to each and every post very soon.

    An update on my situation:
    *My chances of actually being seen by Dr. Lewis, even a year from now, seem to have become even slimmer. The X-rays I originally had taken only included a posterior view (a total oversight of either my family doctor or the X-ray department), which is not relevant to Kyphosis - this turned up a slight Scoliosis curve, which I had not noticed on my own.

    *I went back and had a lateral X-ray done of my thoracic and lumbar spine. The radiologist had gone on vacation at this point, and I had to wait for his return to receive my report. At the beginning of this month, I was able to view the radiologist report, and to my shock, he had not bothered to measure the curve. In fact, the report consisted of one sentence, "There is no evidence of Kyphosis."

    I cannot really even begin to articulate how it feels to be told that there is nothing wrong with me, when my spine is clearly not normal. Everyone around me seems to be telling me "case dismissed" despite my protests about the pain I am experiencing and the emotional battle I fight every. single. day. I have become obsessed with looking at the straight backs of others, and it is not fun.

    Thank you all once again taking the time to reply.
    Last edited by Aimz; 01-12-2012 at 07:04 PM.

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