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Thread: the same old story...

  1. #1
    Join Date
    Apr 2007
    Location
    Sydney
    Posts
    249

    Unhappy the same old story...

    Well I saw the orthapaedic surgeon in Sydney. Well, I was told to do the same stuff I have been doing for ages, pilates, exercise and keep yer chin up! I mean what a load of crap that is. I have done all these things and I am in the same state. So frustrating! People, what have I got to do to convince these surgeons that I have exhuasted all options. Why wont they cut me open? I asked the surgeon, for arguments sake, what he would do if he were to operate. He said they would do an anterior approach and fuse 2-3 in lumbar vertabrae that would reduce the curve in the lumbar and thoracic. Why doesn't he just do it for !!!! sake!
    I don't mean to whinge and I know that most of you have worse scoli than I do, but I am so frustrated getting told by surgeons to repeat therapies that have failed me in the past.
    Funny thing is the physio that my surgeon referred me to looked at my xrays, and said "why the hell don't you get the surgery". She told me I was fit and had great core strength and said that she couldn't really do any more for me.
    I just want some advise on what my next move should be. Is having a 40 degree and 25 degree curve not enough to get surgery, even if I am in constant discomfort? well, I need to relax and continue my search for a compassionate surgeon.

  2. #2
    Join Date
    Aug 2007
    Location
    Auckland, New Zealand
    Posts
    185
    Hi Jimbo,
    Is it time for a second opinion? Or have you had one! Either way, you're doing all the right things and if they're not working for you then why not have surgery! There seems to be a 'magic' number of degrees that they wait for you to hit until operating, but if you are in pain, then why not! Especially if you are likely to get a really good correction when you have a smallish curve.
    Best wishes from across the tasman
    1994 curve at age 13, 70 degrees, untreated
    2000 Anterior fusion with instrumentation T9-L2, corrected to 36 degrees, 14 degree angle between fused and un-fused thoracic spine.
    2007 26 degrees junctional scoliosis
    Revision surgery, 6th December 2007 T4 to L3, Posterior approach.
    msandham.blogspot.com

  3. #3
    Join Date
    Apr 2007
    Location
    Sydney
    Posts
    249
    Yea, that dude was my second opinion, cost me 250 bucks too! Maybe I should go to NZ and see a surgeon, cause here in Australia they are all a bunch of weiners who seem scared to operate on me. I better watch what I say though, I bet some of those surgeons come on this forum, might not appreciate the weiner comment!

  4. #4
    Join Date
    Mar 2008
    Location
    New Bern, NC
    Posts
    1,445
    Hi Jimbo,
    I doubt the the weiners (I mean Dr's) have much time to do any posting on here. Anyway, I got a laugh out of it. Did this Doc tell you why he wouldn't operate on you? I'm sure you told him that you had already exhausted all of the non-invasive stuff. I thought with a lumbar curve, it isn't so much the degree of curve, but the degree of pain you are in that matters. Maybe this guy doesn't have enough confidence in himself to get a successful outcome for you. By the way, did you ask him what his success rate is? If he doesn't have better than a 90 % success rate, then you don't want him anyway. Also, you don't really need a great correction in the lumbar region, just decompression of the vertebrae and a good and stable fusion. You must be so frustrated by now. I hope you find the help you need.
    Sally
    Diagnosed with severe lumbar scoliosis at age 65.
    Posterior Fusion L2-S1 on 12/4/2007. age 67
    Anterior Fusion L3-L4,L4-L5,L5-S1 on 12/19/2007
    Additional bone removed to decompress right side of L3-L4 & L4-L5 on 4/19/2010
    New England Baptist Hospital, Boston, MA
    Dr. Frank F. Rands735.photobucket.com/albums/ww360/butterflyfive/

    "In God We Trust" Happy moments, praise God. Difficult moments, seek God. Quiet moments, worship God. Painful moments, trust God. Every moment, thank God.

  5. #5
    Join Date
    Nov 2007
    Location
    Houston, TX
    Posts
    1,757
    Yeah, stick with it, Jimbo ... although my curve was higher (but at the range 48-53 over the years - and not progressing ... just Cobb variances) than yours degreewise, I know how frustrating it is to have pain all the time - and no relief.

    Mine started at age 10 - and just kept getting worse over the years (even though the curve wasn't moving). I tried every trick in the pain management arsenal (at least once!), and I was still miserable.

    I really feel for you, and it's tough to explain that kind of pain to anyone who hasn't lived it .

    Don't give up on finding a doctor. I know the last thing you probably feel like doing is looking for one over and over, but I'd like to think there HAS to be one out there for you.

    And, please ... heed Sally's words: No matter how desperate you are, don't lower your standards to the first surgeon who'll say yes. This is something you'll have to live with the rest of your life, and I've got my fingers crossed you find a qualified surgeon soon!

    BTW, Sally ... it isn't just lumbar curves that qualify for surgery based on extreme pain. And *I* laughed that YOU laughed at the "weiner" thing - LOL! Aren't you supposed to be on vacation, or not yet?

    Regards,
    Pam
    Fusion is NOT the end of the world.
    AIDS Walk Houston 2008 5K @ 33 days post op!


    41, dx'd JIS & Boston braced @ 10
    Pre-op 53, Post-op < 20
    Fused 2/5/08, T4-L1 ... Darrell S. Hanson, Houston


    VIEW MY X-RAYS
    EMAIL ME

  6. #6
    Join Date
    Feb 2008
    Posts
    51

    Get A Wheelbarrow

    Jimbo is right about Dr.s looking on here, I know for a fact one does and there are possibly more. I don't really see any harm in it so long as folks are mindful of the fact. The PM allows folks to communicate delicate issues if the need arises. And concerning that be sure to remember ANYTHING you write in confidence may come back to haunt you, or someone may threaten to expose it. And while I'm on the subject never never underestimate what some companies will do to save a dollar, sometimes spend two or three to save one. Billionaires love deductions and love to make examples. Also remember you must not bite the hand that feeds you so to speak! Well I started rambling again. I hope you can find a competent surgeon to fix you up. I've heard mention of Dr. Cree over there maybe you could try him. If I were you I would walk in the door being assertive like I already had two opinions that reccomended surgery and and ask a large amount of questions (I'll e-mail you a bunch if you want me to just tell me your edress). I would say that I'd tried every excercise on the planet but they did not give ANY pain relief. Tell him you hate drugs and don't want to kill your liver with them. (You are taking several per day right! and they seem to be losing strength, if you don't have strong ones get a script for some wether you use them or not)Plus tell him the others said anterior and posterior and the latest rage in the U.S. is posterior approach only if at all possible. If he's competent and you need anterior & posterior he'll go that way. Maybe you are already being very assertive. If you can, let them know they work for you in a respectful manner by taking the high ground so to speak you may get a different result. Plus you may keep him off balance letting him know that the other Dr.s reccomended surgery (you just don't say they said maybe year 2025).I may be giving you bad advice so think before you leap. You can pull it off without lying just insert a little gray here and there. Remember most Dr.s aren't stupid! Walk into the exam room in charge and don't let him be physically above you during the discussion. If he stands you do too, if you sit in a chair you fidget and change positions because the pain won't let you get comfortable.Etc-etc
    Good Luck Buddy

  7. #7
    Join Date
    Apr 2007
    Location
    Sydney
    Posts
    249
    Thankyou everyone once again for the outstanding advice, it is very much appreciated. Myachingback, you are a classic! Some interesting points you make. Maybe I should crawl into his office, lol, that would get his attention. Might end up in the psych hospital though. I just wish they could understand the problems this is causing me. How much pain and psychological punishment does one need to endure before seeking a more aggressive treatment. Just the stress involved can wear you down over time and you really have to wonder how much damage that causes.

    I can say one thing, being a male and having this is quite lonely. It appears as if there are not many of us out there, definately in the minority. Well I just got prescribed some tramadol and I am gonna pop a couple and resort to the fetal position, I feel like a big baby, should stick my thumb in my mouth too!

    Goodnight

  8. #8
    Join Date
    Feb 2008
    Posts
    51

    It Is Tough

    I thought of something else. The tramadol is very addictive (look at side effects etc.http://www.drugs.com/tramadol.html). I'd print the side effects and show it to the doc and ask him if he would like to depend on the drug to be able to function. If you have been using this very long you could be addicted. That is or could be another reason for surgical intervention. Can you get a regular night's sleep without pain meds? I don't know how your $ situation or insurance is but if you could not take a pill and have a sleep study done the results may go in your favor if you toss, turn, and moan most of the night. Do you work? If so what do you do? If you are still able to be gainfully employed it may go against you. I know the alternative may be to starve (or work for cash). The Dr.s always ask about recent weight change, (uhm yep 12 lbs. this month doc, it's easy to lose weight if you can't work and buy food.) They also look at the psyche angle. I've been told that on each Dr. visit in the U.S. the doc evaluates you but only notes negative things. You could do some research and learn some things that could be used in your favor but be careful, like I said, MOST of them ain't stupid!
    Be persistent and do not give up. As messed up as we are it is not a suprise we get overcome with stress. I know I'm dealing with a bunch. Just found out I may have one of the most prevalent genetic mutations in people of European decent. Been having trouble for months as I described to docs some time back I am like a house of cards someone thumped. Well it ain't completely confirmed but it looks like hemochromatosis is what thumped me. My rear end is sore from being kicked from one Dr. to another with a relativly common ailment. My wrist joints have 4mm gaps from that, one
    quacko-ortho "SPECIALIST" told me when I asked what caused the gaps was "some people have better houses to live in than others". How do you put one on Quackwatch? After I get straighted out (no pun intended) I will march into his office and demand my 250.00 back. Would have helped my liver if he'd have done his job back in Feb..The worst part is that really totally upsets me that I may have handed this to my 25 y/o daughter whom I love dearly. That hurts me worse than my liver damage. Her I am getting off scoli again.
    Hang Tuff Buddy,
    Chris

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