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  1. #1
    Join Date
    Mar 2004
    Location
    Oklahoma
    Posts
    39

    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
    Join Date
    Sep 2003
    Location
    Northern California
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    6,802
    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
    Join Date
    Mar 2004
    Location
    Oklahoma
    Posts
    39

    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
    Join Date
    Nov 2004
    Location
    fl
    Posts
    73

    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
    Join Date
    Mar 2004
    Location
    Oklahoma
    Posts
    39
    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
    Join Date
    May 2004
    Location
    Southern Illinois, USA
    Posts
    55

    SWEETNESS514, LINDA, and KRYSTAL

    Linda, Krystal, and Sweetness514,
    Thank you so much for your input. I really need to make myself stay in better touch with everyone here... It's a wonderful "support group", in my opinion.
    Yes, Linda... I've told Dr. Lenke many times... One year ago he told me this: "You'll get used to it"...! Yesterday he told me that I'm the only one who complains so much! He was extremely nice about it... but I don't know how he kept a straight face. ~ I am fused from T11 down to S1, and he said that all the fusion areas around the rods are solid and he would not remove them; but he said he would be able to remove the balancing screws from each hip. He also told me that there was no guarantee that removing those screws would help much. Since I don't want anymore surgery right now, I will have to work on my pain management. I think the pain goes away when I lay down because much of the spine is like an accordion... (only vertical instead of horizontal!) - - When I stand up, the accordion closes; and when I lay down, the accordion opens up or releases. Hey, it sounds good!
    "Sweetness"... Thank you also for your response. Strengthening our muscles is a good thing! My thighs are as solid as a rock from being very faithful to physical therapy, daily exercising and walking. It's much easier to stand up from a squatting position now!
    Krystal... Thank you for sharing... I'm glad I'm not the only one who gets frustrated with "inappropriate remarks" by physicians! Remarks like that are very demeaning. Let's all hang in there together, Girls! ("Girls"! Ha! I am 59 years old!) ~ Good night to you all!
    ~ 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

  7. #7
    Join Date
    May 2004
    Location
    Southern Illinois, USA
    Posts
    55

    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 07:08 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

  8. #8
    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

  9. #9
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,802
    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

  10. #10
    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

  11. #11
    Join Date
    Apr 2005
    Posts
    913
    I do get the weight sensation, but noticed that reinforcing the muscles in a mild way like swimming, light weight lifting and stretching helps. The first two years after surgery were the worst, and back then I didn't know it was normal and result of the fusion taking place, since the doctors told me that recovery was supposed to take three months... I have a LOT of patience and all I want is for people to be frank with me and tell me what I have and if/when it will go away, what to do to help the pain, etc.

    As for burning and sharp pain, I have that too mostly in the shoulders and arms, and occasionnally the sciatica. Those are nerves pinching and acupuncture does help. I never went back to my chiro after the surgeries, he told me not to and am too scared that he would misplace hardware. The pain is always worse has the day goes by and the more I do.

  12. #12
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,802
    Hi Irene...

    I wonder if you're having muscle spasms. That's what it sort of sounds like.

    My recommendation would be to write an unemotional letter to Dr. Lenke to see if you can get his attention. Or, what would happen if you tried to make an appointment with Dr. Bridwell? I think that Dr. Lenke deals more with kids than adults, so perhaps that's part of the problem. If he truly told you that none of his patients complain of pain, I'm sure he didn't mean it. Sometimes, just like in the rest of life, there are personality clashes that sort of get in the way of things.

    Hope you get some help.

    Regards,
    Linda

  13. #13
    Join Date
    Jan 2005
    Posts
    96
    Irene - your pain sounds quite a lot like mine, which has just been clarified at my last hospital appointment (6 months post-spinal fusion, age 55). I too was convinced it was the instrumentation hurting, and this was what the consultant said in February. He also said it should settle down, which it didn't. It was stopping me leaving off my brace and generally making life a misery, a feeling of metal digging into flesh which receded when I lay down, so best in the morning and worse as the day goes on or as I do more (after swimming it was terrible!). The suggestion this time makes sense, that it is muscle spasm - which makes sense, since the pain goes when I lie down. Probably because I expect it to hurt, so when the pain begins I tense up (round the top connector) and the pain gets worse, so I tense up more. He suggested I try taking ibuprofen now that the initial period of fusion is over, but unfortunately it upsets my stomach. But just knowing it must be muscle tension rather than the hardward itself helps a lot. Hope to get some physio and later some yoga lessons which might help me learn to relax it.

    Best of luck,

    Lavinia

  14. #14
    Join Date
    May 2004
    Location
    Southern Illinois, USA
    Posts
    55
    Sweetness514 ~ Hi again! How in the world did one of your rods break? I'm sure if I did some "digging" through this Forum, I'd find your answer. Please forgive me for taking this shortcut! If you'd like to talk direct, please do! My email address is ReenMommy@aol.com ~ Thanks, "Sweetness"!
    ~ 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

  15. #15
    Join Date
    Nov 2004
    Location
    fl
    Posts
    73
    Hi All,
    I hope everyone feel great today. I feel like I am in pain for everyone, LOL. I had the myelogram and it apparently didn't seal and I have a leak. I have a headache and back ache that wont stop. Tuesday I go in for a bloodpatch. The doctors are all out for the weekend so no one can come in til tomorrow. My luck.

    Well I have had some time to think back to wearing a back support during my job at a grocery store, and I remembered how the muscles in my back were very weak from wearing it but I also remember right above the line wear I wore it was always sore. I guess it took the brunt of the lifting. I can't wear them now at all the pressure is so bad that I feel like it makes my spine feel crushed. The lower back is the worst for me after I gained weight and at times even wearing pants that have a waist band that is snug hurts.

    I am trying to figure out how I am going to make it through laying in bed after surgery. I cant stand it now just a few days. I am going stir crazy. Well I gotta go the headache is coming on strong. Have a great holiday .
    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

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