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Thread: Questions for Surgeons

  1. #1
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    Questions for Surgeons

    Titaniumed- You said you would post some relevant questions to ask a surgeon? Let me type the report from my last visit to an Ortho. who said he wasn't comfortable handling my case. I'm going to see Dr. Orr at Cleveland Clinic in a few weeks.....

    HISTORY:This is a 29 year old male with most likely the diagnosis of Marfan Syndrome who presents with rather severe chest pain. On physical exam, the patient is 6'9". He appears to have an arm span greater than height. On grasping his wrist, his thumb overlaps the entire distal phalanx of his long finger. The patient denies any previous eye problems.
    The evaluation of the back reveals moderately severe double structural thoracolumber curve. The patient has severe chest wall deformity; particularly on the right side with significantly diminished right chest volume from a combination of unexpected narrowing of the thoracic chest wall anteriorly as well as a severe right rib hump. It should be noted that this is the site of the patients most extreme pain. The patient otherwise appears to be fairly well balanced in the sagittal and coronal planes. However, he does have a significant right thoracic, left lumbar curve. Neurologically, the patient is alert and oriented times three, cranial nerves are intact, no objective distal dysesthesias.
    Diagnostic X-rays AP and lateral and scoliosis views obtained. The patient has a 68-degree thoracic curvature with severe rib hump. The patient has a significant 60-degree lumbar curve. The patient appears to have significant ankylosis across the disc spaces particularly in the lumbar spine on the concave side.

    PLAN:At this time, secondary to severe thoracolumbar scoliosis would reccpmend the patient be referred to either the Cleveland Clinic or Ann Arbor for evaluation of the scoliosis. At this juncture, unfortunately I suspect that his curves have largely stabilized through degenerative processes and subsequent ankylosis and therefore are not likely to progress. However, secondary to his quite complex nature, I believe he would be best treated by someone more experienced with treating of scoliosis and Marfan's. We will therefore see if we cannot get him a referral.

    David A. Beeks, M.D.
    DAB/dls





    Any thoughts?

  2. #2
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    I have had my son screened for Marfan's. Many of the skeletal signs that people with connective tissue disorders have could be indicative of Marfan's but are also commonly found together in the absence of Marfan's. Doctor's always looked at me carefully and made me do some strange things and I now know that they were probably screening me for Marfan's.

    You might already know this, but keeping on eye on your heart is the most important thing. Have you had an echocardiogram? Sounds like it would be a good idea to find someone who understands how to diagnose Marfan's, as it can be difficult to diagnose. There is also a very specific formula used for comparing wingspan to height. My son's cardiologist finally gave us the "all clear" and he was very familiar with all the measuring, etc.

    Good luck!
    Kathy, 43
    Diagnosed as a teen
    Boston brace 2 years
    63 degree lumbar curve
    Surgery August 26, 2009
    Anterior approach fused T12-L4
    now 28 degrees

  3. #3
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    Mike

    Wow you are tall. I used to ski with a friend that was your height. I used to joke around that he was a great powder skiing partner due to the fact that when he would crash in 3 feet of powder, there was still about 3 feet of him sticking above the snow, and was easy to find. I know, he didn't think that was funny either.....

    I feel that humor is necessary having scoliosis. Anyway, here is a start. You can print this out and take with you.

    https://www.infusebonegraft.com/fact...t_surgery.html

    https://www.infusebonegraft.com/ques...r_surgeon.html

    Linda Racine also has lists on her site.

    http://www.scoliosislinks.com/

    Marfans syndrome
    http://en.wikipedia.org/wiki/Marfan_syndrome

    Anklosis
    http://en.wikipedia.org/wiki/Ankylosis

    Anklosing spondylitis
    http://en.wikipedia.org/wiki/Ankylosing_Spondylitis

    I would read all these articles and get familiar with this material. At least you can get a head start for when you go and chat with the next surgeon.

    I'm wondering if you have had a full physical? Usually they can find out quite a bit from the blood work. It might not be a bad idea to ask if you need a physical before meeting with the next specialist.

    You will also need to bring all x-rays,mri,cts, etc that you have done in the past with you. The docs kinda like to have these things you know.

    Once again, you do not have to commit if you are unsure. Every surgeon knows that we are all scared, and its perfectly normal to just say that you need to think about it.

    Keep us posted
    Ed
    49 yr old male, now 58, the new 53...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  4. #4
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    Hi Mike...

    In case the last link that Ed provided sounds scary to you, you should know that ankylosing spondylitis is entirely unconnected to scoliosis and the "subsequent ankylosis" mentioned in your doctor's notes. I believe the ankylosis the doctor is referring to means that you potentially already have some fusion caused by degeneration.

    Regards,
    Linda

  5. #5
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    Mike

    I'm getting lazy in my computer work these days and just wanted to post the pics in the AS article. Then I figured, what the heck, I will post the whole article. It doesn't hurt to know.

    Only until your specialist or specialists do their diagnosis do you need "to worry" about other disorders. It is beneficial "to know" about scoliosis and ankylosis since this, for now, is definite.

    The Cleveland clinic does have quite a reputation. If Prince Charles comes over from England, that's a statement.
    http://en.wikipedia.org/wiki/The_Cleveland_Clinic

    One of the things that's available with digital x-rays is the fact that they can burn you a disc. I have asked in the past on x-rays, and cts, and it is neat to have these personal dated copies in your possession. They are your property. I also requested all my hospital reports on my surgeries and have them in my possession. For some reason, I find it very interesting.

    Adult scoliosis with Dr Orr
    http://my.clevelandclinic.org/multim...ranscript.aspx

    He mentions NSF at the end. There's a bonus point!

    Ed
    49 yr old male, now 58, the new 53...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  6. #6
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    Im in a big hurry here....trying to get out the door to work. But I do have a copy of my latest x-rays on disk, just dont have the right software to open it on my computer. I think its called pex software or something. But thanks alot for posting all that info. for me. I really do appreciate it. It really is nice to have other people to talk to that can relate to what you're going through. Well, gotta go give people tv. (I install Dish Network)

  7. #7
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    Another update here... Went to the Cleveland Clinic today to meet with Dr. Orr. It went pretty much as expected. He ordered a lumber and thoracic MRI, and bending x-rays. I also have to get clearance from a cardiologist, which ill be seeing on Dec. 14. Have another appointment with Dr. Orr on Jan. 19, and hopefully we'll set a date for surgery then. Man, what a long process. A little upset his office did'nt let me know he wanted these things BEFORE I made the trip out to see him.

    He mentioned the curve was around 70 degrees. Also said that he may only fuse the thoracic curve, as that would relieve the pressure on my lower spine, and reduce the pain.That doesnt make sense to me because I've been told I had a lumbar curve of about 60 degrees. Does that mean he would just leave the curve there? I also asked him about a thorocoplasty, and was told that he wouldnt do it. He said the new technology of this surgery would drastically reduce the rib hump by itself.

  8. #8
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    Quote Originally Posted by osumike View Post
    He mentioned the curve was around 70 degrees. Also said that he may only fuse the thoracic curve, as that would relieve the pressure on my lower spine, and reduce the pain.That doesnt make sense to me because I've been told I had a lumbar curve of about 60 degrees. Does that mean he would just leave the curve there?
    If the lower curve is compensatory and not structural as it seems like the surgeon is saying, the lower curve will straighten out by itself somewhat, mostly, or completely if the structural curve is straightened and fused. At least that is exactly what happened with both my daughters.

    I also asked him about a thorocoplasty, and was told that he wouldnt do it. He said the new technology of this surgery would drastically reduce the rib hump by itself.
    Pedicle screw constructs can achieve amazing degrees of derotation to the point that the patient has no visible rotation. At least that is how it went down with both my daughters. I don't think surgeons ever need to do thorocoplasty any more because of this but I don't know that.

    Good luck.
    Last edited by Pooka1; 11-25-2009 at 09:12 PM.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  9. #9
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    Jul 2009
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    Sharon,

    How long did it take for your daughters' compensatory curves to straighten? Did they realy straighten completely? My doctor said that this might happen with me, as my "other" curve is very small.
    Kathy, 43
    Diagnosed as a teen
    Boston brace 2 years
    63 degree lumbar curve
    Surgery August 26, 2009
    Anterior approach fused T12-L4
    now 28 degrees

  10. #10
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    Quote Originally Posted by kt2009 View Post
    Sharon,

    How long did it take for your daughters' compensatory curves to straighten? Did they really straighten completely? My doctor said that this might happen with me, as my "other" curve is very small.
    For the first kid, it was pretty much straight by the first post-op radiograph done in the hospital on day 4.

    For the second kid on day 4 in the hospital there was still a small curve very low although the top was now perfectly straight. I'd say it straightened at least 90% after surgery within that four days. It actually concerned me because of seeing the result for the first kid. It wasn't a large curve but it was noticeable and the other kid didn't have it so I was concerned.

    By the ~3 week visit to investigate her "hug" injury, the low curve had straightened noticeably more but she still has a slight curve there. I asked if that would ever straighten completely and he said maybe a little more but she would probably have that slight curve her whole life.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

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