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Thread: Don't know what to do now?

  1. #1
    Join Date
    Mar 2004
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    Oklahoma
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    Angry Don't know what to do now?

    I had back surgery about a year ago and ever since then I have had trouble. I had a Harrington rod removed and had some discs repaired. I called the Dr. who did the surgery today and was told he was no longer seeing scoliosis patients. The bad thing about it is, while he was on vacation I had to see two other Drs. They said they did not want to touch my back. This upsets me so much. I feel like my spine is trying to push out of my back and my shoulders are continuing to be lopsided. I know I'm going to need more surgery. I hope I can find a new Dr to help me get the pain down some and to stabalize my spine and shoulders. I know I will never be pain free, but less pain than what I am in now will help tremendously. Any suggestions will greatly help. thanks

  2. #2
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    Hi...

    If there's any chance you can get to St. Louis, I'd bet that Keith Bridwell would be able to help. It can be difficult finding a surgeon who has a lot of experience in treating people with prior scoliosis fusions.

    --Linda

  3. #3
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    Oklahoma
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    St Louis

    I've called my insurance company (last week) and was told they wouldn't cover me having the surgery in St. Louis. I have Pacificare. Today, I saw my PCP and he told me he really felt that if the Dr. in St. Louis was the only Dr. who would be able to help me,,,he felt my insurance would take care of it. Turns out my PCP was able to get my surgeon to see me tomorrow....this is even after he claims he no longer sees scoliosis patients. I believe my surgeon will try to refer me out to someone else. Just don't know what to do. I saw a psychologist today because I'm experiencing depression because I can't work and because of the pain. Just don't know what to do now.

  4. #4
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    Nov 2004
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    fl
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    I felt fed up too..

    Hi,
    I just read this topic and it brought back alot of thoughts about doctors and their obligations. When I tried to get in to see my surgeon as an adult they told me the doctor doesn't see adults. BUT if they do the surgery the HAVE to either see you or refer you. I called alot of people about this including the Department of Health here in FL. They can be sued for not seeing someone. Which maybe since you are suffering from a failed surgery seek the advice of a lawyer. They can tell you quickly what your rights are as a patient. I think it is nonsense for any doctor to not see there patients.

    Also I thought if I get turned down by one more doctor, I am going to the emergency room and I will refuse to leave until I either get admitted or reffered to a ortho. Then they can't refuse me anymore. It is time that we start showing doctors are here to treat us for all different causes. They need to realize they should not have to be forced into taking us, but we can work around that too.

    Don't give up. It will work itself out. I had to move to a different town to find better doctors. I am currently in the works to have the second surgery and have narrowed it down to three doctors. It took 2 years but I will soon go in and be on the road to recovery. Good Luck. Krystal
    Diagnosed 11 at school screening, surgery 16.
    Had Harrington rods w/fusions.
    Luque-thorasic.
    Full term pregnancies,no major issues.sciatica with the first. Epidurals with C-sections
    2005:lumbar reconstruction, 2 plates, 6 screws in sacrum, and 2 cages with my own bone.
    2007: cervical surgery to correct 4 bulging discs, two fusions with cages using cadaver bone.
    Both of my daughters have scoliosis. Both were diagnosed by 7.
    http://spinedoctors.md/ Dr, Jospeh Flynn Jr

  5. #5
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    Oklahoma
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    thanks for the reply. I was able to see my surgeon on Thursday of this week. He told me the reason he is not seeing scoliosis patients anymore is because he is going thru a rough time in his life right now. He went on to say that his brother had recently passed away and he is going thru a divorce. I suppose my back problems have to take the back-seat to his personal issues. But he did set me up with another physician in Midwest City, OK. I hope this physician is able to fix the problem. All I can do is hope and pray. But the fear of never being corrected scares me.

  6. #6
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    I can't imagine why someone would want to see a doctor who states that s/he is no longer treating scoliosis patients. While it may not be convenient, it seems to me that one would be better off with a doctor who WANTS to treat patients.

    --Linda

  7. #7
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    I just felt that my surgeon owed me an explanation. I feel he's responsible for my follow-up care, especially since it seems that this surgery was a mistake. The fact that he decided just in the last few weeks to no longer see scoliosis patients leaves me high and dry.

  8. #8
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    Angry upset


    Went to another Dr. and he told me that it is hard to believe that my
    shoulders haven't also been lopsided. Even though I told him that they
    weren't. I told this DR that my shoulders have gotten a whole lot worse
    since my last surgery in June 2005. He than proceeded to tell me that
    everyone with scoliosis has uneven shoulders and that the surgery which
    removied my Harrington rod had nothing to do with it. But I know that
    before my surgery I had level shoulders and my upper back did not hurt as
    bad as it does now. I felt like this new Dr thinks this problem is all in
    my head. And I know different !!! I know my body and I know that my
    shoulders were pretty even until I had this last surgery. Has anybody
    ever had a DR make them fell really bad about themselves? It just upsets
    me to know that this DR made me feel this way.

  9. #9
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    Sep 2003
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    Northern California
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    Hi JustLee...

    Maybe you need to get a second opinion. Uneven shoulders are usually a pain response. (You hold your high shoulder like that because it's less painful.) If you have more pain since the surgery to remove your implants (beyond the typical short-term surgery pain), it's possible that you have an area that isn't fused.

    Regards,
    Linda

  10. #10
    Join Date
    Nov 2004
    Location
    fl
    Posts
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    Hi,
    i am sorry to hear how the doctors keep coming up short for you. I finally found a doctor that has the ability to read an xray by himself. He pointed out something to me that I over look alot. I am so tense that I make myself hurt. I think I start to hurt and then get muscle spasms from being so afraid to let my arm hang or to misstep and hurt my lower back. Which by the way after 10 doctors I have tried to tell this to, my disc is gone in the lower vertabrae. I knew it. It is bone on bone. EEEwwwwwwww. I hate the sound. But Lee I have gone to alot of doctors to find ONE that has experience. I refused to give up and moved two times to find this one. Keep looking you will find one. I have been told I was faking it, I am depressed, I have fibromyalgia, I was also told I am trying to get pills to sell. I have heard it all. The funny thing is I don't ask for any pills ever. I suffer silently just so I didn't have to hear those things said. It crushes me to know how uncaring doctors can be, but rest assured there is one out there. Dr. Flynn Jr. will do the surgery I need to have done. spinedoctors.com check them out. Keep trying and keep the faith. Krystal
    Diagnosed 11 at school screening, surgery 16.
    Had Harrington rods w/fusions.
    Luque-thorasic.
    Full term pregnancies,no major issues.sciatica with the first. Epidurals with C-sections
    2005:lumbar reconstruction, 2 plates, 6 screws in sacrum, and 2 cages with my own bone.
    2007: cervical surgery to correct 4 bulging discs, two fusions with cages using cadaver bone.
    Both of my daughters have scoliosis. Both were diagnosed by 7.
    http://spinedoctors.md/ Dr, Jospeh Flynn Jr

  11. #11
    Join Date
    Apr 2005
    Posts
    913
    Wow, some doctors are really cold.

    The doctor that operated me was really good, but had NO bedside manners whatsoever, he reminded me of a nazi. All he could repeat was "pain is pain"...

    After a few years of having the surgeries done, I switched to another one(who is my ortho now), and was pleasantly surprised when he actually took the time to explain how exercises, and acupuncture can help, besides prescribing pills that I hardly ever took. But ever since last year when my rod broke, he is disappointing me. First he gave me Vioxx for over three months and THANK GOD it was taken off the market as I nearly had heart attacks many times. Couldn't function anymore, and of course he said that he didn't believe Vioxx was bad. Then he prescribed Bextra that I did NOT use since it's from the same family of Vioxx and trusted MY instincts, not his. When he talks to me, he does explain everything but in a complicated medical terms, and he doesn't like that I was mad that they took a year to see that I had a broken rod and didn't believe that I knew it must be that. He has an ego.

    Anyways, I understand what some of us feel regarding them and will see another one.

  12. #12
    Join Date
    May 2004
    Location
    Southern Illinois, USA
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    Exclamation St. Louis Spine Center - Barnes

    Quote Originally Posted by LindaRacine
    Hi...

    If there's any chance you can get to St. Louis, I'd bet that Keith Bridwell would be able to help. It can be difficult finding a surgeon who has a lot of experience in treating people with prior scoliosis fusions.
    --Linda
    Hey Linda....!
    My name is Irene Wilkey... It's been a long time since I've been here in this Forum... Hello to everyone...! ~ Linda, I live in Southern Illinois, and I had my surgery 3 years ago by Dr. Keith Bridwell's partner, Dr. Lawrence Lenke. I'm still going crazy with that terrible "crushing" sensation ~ I can't get anyone to understand... I went for my 3-year post op exam yesterday, (May 25, 2005), and when I told Dr. Lenke how much discomfort I'm in ...24 HOURS A DAY... guess what his reply was....! ~ He told me that none of his patients complain as much as I do!!!!!!! How do you like that??!!! That simply CAN'T be true!! ~ I am in the category of "I don't know what to do".... There are so many of us in that situation... How frustrating... I get myself through one day at a time by "reminding" myself of the fact that "paralyzed people" would give anything to feel my pain!!! UGH! I need to read "posts" in this Forum more often... At least I know I'm not alone.... Thanks!
    God Bless us ALL!
    Last edited by Irene; 05-26-2005 at 06:08 PM.
    ~ Irene ~
    Lumbosacral Scoliosis: Corrective surgery (12 hours anterior and posterior) on June 19, 2002 at age 56; Surgeon: Lawrence G. Lenke; Hospital: Barnes in St. Louis, Missouri; Pre-Op 58/56 degrees "S" curve; Post-Op: 40/33 degrees; Fusion: T-11 to S1

  13. #13
    Join Date
    Nov 2004
    Location
    fl
    Posts
    73
    I totally understand. After I had my second child the only thing that didn't give me problems was my scoliosis.
    I was told by a primary care doctor that I went to was "I had a 70 year old with less problems than I do." I yelled and cussed him out with the worst language that has ever been spoken. Since then I have been afraid to tell doctors how I truly feel. At that time I really had alot of internal problems that was attributed to a high fever from mastitis and kidney stones, and gall stones. I wish the problem would have been in my head.

    The doctors I have now see how bad my back is from looking at it on the outside and say the pain is legitament. I have lost the disk in the lower back and they hone in on that giving the problem. Truthfully the worst pain is in the neck from the disks bulging inward. I can hardly lift my arm to brush my hair. I had to stop seeing my chiropractor and I feel awful all the time.

    I feel like I am nearly there, and hope the surgery cures some of the fatigue. I would like to stand up straight again.
    Diagnosed 11 at school screening, surgery 16.
    Had Harrington rods w/fusions.
    Luque-thorasic.
    Full term pregnancies,no major issues.sciatica with the first. Epidurals with C-sections
    2005:lumbar reconstruction, 2 plates, 6 screws in sacrum, and 2 cages with my own bone.
    2007: cervical surgery to correct 4 bulging discs, two fusions with cages using cadaver bone.
    Both of my daughters have scoliosis. Both were diagnosed by 7.
    http://spinedoctors.md/ Dr, Jospeh Flynn Jr

  14. #14
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,794
    Hi Irene...

    I think that what you were told by Dr. Lenke is totally inappropriate. Obviously, someone has to be the worst. I wonder if you need to be more specific about your pain so that he understands. Your description of "crushing feeling" is something I haven't heard before. Here are some elements of pain that might be helpful in really defining what you're feeling:

    * Is your pain 24/7, or does it come and go. Do certain activities bring it on or make it go away?
    * Where is the pain?
    * Is the pain sharp, burning, dull?
    * Do narcotics make the pain go away?

    Perhaps others can step in with other descriptions that might help you define your pain.

    I'm sorry that you're going through all of this.

    Regards,
    Linda

  15. #15
    Join Date
    May 2004
    Location
    Southern Illinois, USA
    Posts
    55

    "Don't Know What to do Now"...

    Quote Originally Posted by LindaRacine
    Hi Irene...

    I think that what you were told by Dr. Lenke is totally inappropriate. Obviously, someone has to be the worst. I wonder if you need to be more specific about your pain so that he understands. Your description of "crushing feeling" is something I haven't heard before. Here are some elements of pain that might be helpful in really defining what you're feeling:

    * Is your pain 24/7, or does it come and go. Do certain activities bring it on or make it go away?
    * Where is the pain?
    * Is the pain sharp, burning, dull?
    * Do narcotics make the pain go away?

    Perhaps others can step in with other descriptions that might help you define your pain.

    I'm sorry that you're going through all of this.

    Regards,
    Linda
    Wow, Linda... I can't believe you replied so quickly... thank you so much...
    You've asked some very good questions. I should have stated that I get COMPLETE relief from all pain & discomfort when I'm laying down. That's because I don't have to fight gravity! That "crushing" sensation that I always feel while standing or sitting is kind of like a pressure build-up. I feel like my lower spine is in a vice. Something is "squeezing" me in there! The longer I must deal with gravity vertically, the more "pressure" I feel, which begins to hurt more and more. I've explained this to Dr. Lenke and he still says I'm the only one that complains about this. I simply don't believe it. There are other people just like me out there... suffering from the same type of post-surgical discomfort from all that inserted instrumentation into my spine and hips. I think the world of Dr. Lenke... I'm still better off because of the corrective surgery... I can breathe better and I can stand up much straighter and for longer periods of time. I had no idea that I would still be suffering this much 3 years after my surgery and I sincerely believe that Dr. Lenke has not been totally honest with me. It's quite a disappointment. ~
    Yes, certain activities make it worse... anything "strenuous" ... even too much walking. Laying flat in bed makes all the pressure and pain go away completely. The worse part of my pain is about the size of a large dinner plate... all through the lumbar area. The pain varies from all 3 forms you mentioned... sharp, burning, and dull. It all depends on what I do physically. Narcotics just make me sleepy... Sure would love it if you could email me sometime... (ReenMommy@aol.com) ~ Perhaps you could give me some advice... Thanks so much, Linda!
    ~ Irene ~
    Lumbosacral Scoliosis: Corrective surgery (12 hours anterior and posterior) on June 19, 2002 at age 56; Surgeon: Lawrence G. Lenke; Hospital: Barnes in St. Louis, Missouri; Pre-Op 58/56 degrees "S" curve; Post-Op: 40/33 degrees; Fusion: T-11 to S1

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