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Thread: Don't know what to do now?

  1. #16
    Join Date
    Apr 2005
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    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.

  2. #17
    Join Date
    Sep 2003
    Location
    Northern California
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    6,794
    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

  3. #18
    Join Date
    May 2004
    Location
    Southern Illinois, USA
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    55
    Thanks for another quick response, Linda... It's not muscle spasms... It's the instrumentation. I can feel all that stuff inside of me. Maybe it's because I'm so thin. I don't know. I've thought about making an appointment with Dr. Bridwell, but they are partners... I don't know how he could give me an honest opinion if it conflicts with Dr. Lenke's. But I will really think about it again. It certainly wouldn't hurt just to meet with Dr. Bridwell and have a good chat!
    ~ 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

  4. #19
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    Northern California
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    Hi Irene...

    I've known others who have told me that it was always obvious that their implants were the cause of their pain. I wonder why the pain goes away when you lay down. Did you tell Dr. Lenke that that's what you think? (I ask because it wasn't at all clear to me until your last post.) Anyway, you should investigate having your implants removed. There are some potential risks, but many people say they're very happy that their implants were removed.

    Regards,
    Linda

  5. #20
    Join Date
    May 2004
    Location
    Wilmette, Illinois
    Posts
    20

    Call Children's Memorial in Chicago

    They will direct you to someone who will be happy to look at your back and to help you out, I promise. See my new thread for more details!
    Jill's Mom - Surgery, Children's Memorial Hospital - June 4th, 2004

  6. #21
    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. #22
    Join Date
    May 2004
    Location
    Southern Illinois, USA
    Posts
    55

    Jill K's Mom....

    Jill K's Mom... Hi! I can't find your new thread! May I please have the title? Thanks!
    ~ 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. #23
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    Sep 2003
    Location
    Northern California
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    Hi Irene...

    The area within your fusion should not be opening and closing. If it is, your fusion isn't solid.

    --Linda

  9. #24
    Join Date
    May 2004
    Location
    Southern Illinois, USA
    Posts
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    Solid Fusion

    Mornin' Linda! I'm only fused up to T11. Isn't it possible that when I stand up the rest of my upper spine automatically reacts to gravity, and the "pressure" begins to build up? At least that's what Dr. Lenke indicated. Wednesday's X-rays showed my fusion as being very solid. I forgot to mention that wearing a support belt helps me quite a bit. The outside pressure seems to make the inside pressure more bearable. Maybe Dr. Lenke is right... Maybe I'm the only one who complains about that "crushing sensation"... Perhaps my skinny body is simply overly sensitive...
    ~ 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

  10. #25
    Join Date
    Apr 2005
    Posts
    913
    I don't think you are the only one Irene...

    I do feel it too(the upper weight, that is also hard for my lower back), and am not skinny(am normal weight for my height). It is also a matter of muscles, bones and physical strenght. I was never physical or did any violent sports before the surgery and was not build very strong, since I am very delicate when it comes to my bone density and when I was 18, doctors told me that I had bones of a 12 year old. Like I said, I do feel it less with time and exercise for the back muscles like swimming and light weight lifting helped me, but I take also calcium and have to be careful as my mom has osteoporosis

    Your doc is not the first one to say that about you being the "only" one to complain, they often say that as they don't like to hear people in pain especially when they feel helpless

  11. #26
    Join Date
    Nov 2004
    Location
    fl
    Posts
    73
    Hi Irene,
    Sorry I haven't been responding. I had a cat scan with a myelogram and it didn't go well. Major headache with pain in the right leg. They "brushed" up against a nerve. Then the pompous ass said the pain wasn't from the myelogram. Yeah o.k. Then offered pain medicine. I told them that isn't why I called I called to find out if I should ice the headache and back. I get so fed up. They act like it is all about narcotics.

    Anyway I was thinking back to when I was skinny. LOL and wondered if I felt the same way with the rods. I don't remember any pain at all. But I do recall when I stopped working out and the muscles in my stomach were weaker. You mentioned wearing a brace type of thing. I wonder if your muscles have weakened due to prolonged wearing? Just curious. Let me know.
    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

  12. #27
    Join Date
    May 2004
    Location
    Southern Illinois, USA
    Posts
    55
    Hi Sweetness ~ Hi Krystal! ~ Your comments lifted me this morning. Getting out of bed was depressing for me, but when you showed me that I'm not "alone" with my scoliosis problems, my attitude changes for the better. Sweetness, what a warm feeling to know you understand. Thanks for telling me that you have felt it too. You especially helped me by saying "Your doc is not the first one to say that about you being the 'only' one to complain, they often say that as they don't like to hear people in pain especially when they feel helpless". I think I agree! ~ I exercise quite a bit and my muscles are strong. ~ Krystal, I don't know what to do about using my support belt. I agree with your logic that using it too much could be interfering with muscle strengthening. I asked my doctor about that and he told me using it is fine... that even "normal" people use those belts, especially if they have jobs that require much standing and lifting. But maybe he said that to shut me up! Like Sweetness says... "roll eyes"! Who knows! I think I'm going to take Linda Racine's advice and get Dr. Bridwell's opinion. ~ Hope you all have a nice Memorial Day...
    ~ 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. #28
    Join Date
    Apr 2005
    Posts
    913
    Aww, thanks Irene

    I too get courage coming here and trust me, lately I don't feel like getting up in the morning either, since I know that I have to spend my day trying to to "cope" with the pain. I also am not looking forward to spending this Summer looking for another ortho and going to other doctor's appointments b/c my broken rod is getting on my nerves and I want a second opinion, don't know what do to now and for like a lot of us here, surgery always is scary not only just b/c of the surgery and risks but b/c of the fear of ADDITIONAL surgery, sigh Like Krystal said, I was wondering about your belt, since I did wear the brace for a year after the first surgery and the doc told me that it wasn't good for the muscles, but it is only a belt for you and not a whole brace and you're right, many people wear them.

    But anyway, let's take it day by day, that's what I say

  14. #29
    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. #30
    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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