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Thread: Don't know what to do now?

  1. #61
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,801
    Hi Krystal...

    Make sure that the orthotist drills holes into the brace. That will allow the heat to dissipate some. I think your best bet for under the brace will be 100% cotton men's undershirts (not T-shirts). (I've heard them referred to as wife-beaters. YIKES!)

    Regards,
    Linda

  2. #62
    Join Date
    Nov 2004
    Location
    fl
    Posts
    73
    Hi Linda,
    That is a good idea. I remember wearing those "wife beaters" alot. I am looking forward to getting myself better. I am in alot of pain.

    How often have you heard of people being worst off after myelograms?

    It really gave my a jolt when they stuck the needle in both times. The second time was the worst cramping I have ever felt. That is why when the other doctor told me that one of the treatments recommended was the epidural injections I nearly cried.
    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

  3. #63
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,801
    Hi Krystal...

    I can't tell you how often, but I've definitely heard people complain that they were very painful. That's why I was surprised that my own myleogram wasn't painful at all. Maybe it depends on the radiologist? The radiologist who did mine has done thousands. I'd love to find out exactly what causes the pain. I'm thinking that maybe they hit a nerve root?

    Regards,
    Linda

  4. #64
    Join Date
    May 2005
    Posts
    19

    my two cents

    Hi!

    I had an epidural in July and it was the worst experience I've had in a long time. The 'theory' was that there just wasn't enough space for the fluid they injected at the spot they injected it, but the pain mgmt. doc said there is no way to know for sure. It hit me the worst when I got home and took one step up at my front porch - sent shocks through my entire body. I am pretty darn tough when it comes to pain and I completely lost it. I cried uncontrollably and told my mom to call the hospital and tell them something was seriously wrong. She thought I was over-reacting. After taking my pain meds and lying down for about 3 hours, the pain finally was under control, but I refused to go through with the other 2 epidurals they wanted to do. I had zero relief from the first one after the initial pain calmed down.

    Then, when I went in for my myelogram, I found out that there was no pain management planned and had a mini anxiety attack - almost rescheduled with an anesthesiologist - but my doctor's nurse assured me it would all be OK. They said I could take a hydrocodone before they started and I was really glad I asked. It was painful and I did cry, but I survived. I don't think I would feel the same if I hadn't taken something before they started. It also was kind of nice because I actually fell asleep while they were doing the CT scan. The tech came in and said I was all done and he hadn't told me to hold my breath. I gave him a funny look and he realized he hadn't told me. He said the images were great so it didn't really matter. That was the very best part of the experience. I did end up with a headache, but opted to stay in bed (because it was the weekend) and by Tuesday afternoon, I felt fine. I guess I just sealed slowly.

    Anyway, I have no idea why some people hurt and some don't, but I have great empathy for those that do!

  5. #65
    Join Date
    Sep 2003
    Location
    Northern California
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    I'm not sure why, but I wasn't asked to hold my breath for the CT either (and I was completely awake). I've had half a dozen CTs prior to this, and each time, I was told to hold my breath. I kept waiting for them to start, and when they pulled me out of the tunnel, I wondered if something had gone wrong, but they said they had great images.

    --Linda

  6. #66
    Join Date
    Nov 2004
    Location
    fl
    Posts
    73
    Hey All,
    JUst to note that when I did the first myelogram the doctor that did it injected me with little shots to numb it first. So then when it went in it felt like pressure. But when he hit the nerve ending my leg jumped uncontrollably. He then took the needle out some, and reinserted it until my leg stopped jumping. He said "I brushed up against a nerve". I laughed (I do that when I am nervous or in pain) and said I hate to see the nerve get hit head on, I'd probably kick someone in the head. Everyone laughed. So when I went for the blood patch it was the same thing except they were putting in the blood and not the dye. It was way worst.

    He didn't inject the little shots first to numb. He put the needle straight through but the pressure was intense and then the fluid/blood went in and it was the worst cramping ever. I have never had such a feeling. I will give and example like this. I had a cramps in my leg when I was pregnant from I guess the hypertension I had. I had a "charley horse" in my leg that tore a muscle. This was pain from the myelogram was 10 fold to that pain. I was so sore from the tension i could not stand it. I could not sit on the toilet because the joints in my hips and butt felt like I had worked out for days.

    I would imagine that my back is pretty messed up nerve wise and maybe it is effected differently than normal. They said they nerve roots are so pinched and shifted that many of them are so far out of wack. The sciatic nerve is nearly not visible on the cat scan because of the disc is taking up the whole space.

    I almost went in for these epidural injections for my neck because it has 4 buldged discs. On the way there I got lost and couldn't find the place I had an anxiety attack and went home after trying to call and not getting through to the office. I am glad I did now. I wouldn't have taken that like a trooper.
    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

  7. #67
    Join Date
    Apr 2005
    Posts
    913
    The only experiences I had with shots were cortisone, two where my hooks were(now taken out) and one in my hip bone, and only the hip bone hurt but good God not as bad as what you guys are describing I do remember terrible pain when I was severely anemic and they injected me for months with Iron in my butt muscles. Ohhh the pain, couldn't walk, sit or go to the loo There is also a side effect that can happen when we get shots, and that is to lose consciousness due to them hitting a nerve that makes your BP drop severely. Doctors told me that it VERY rarely happens but it happened to me twice That's why everybody is different.

    Krystal I didn't know you had to wear a hard brace, I hope for not too long I only wore the soft/belt type one, but your surgery is lower now as well.

  8. #68
    Join Date
    Sep 2003
    Location
    NJ
    Posts
    1,291

    pain with injections

    The present standard of care in anesthesiology is for some type of sedation for nerve block injections to avoid those terrible experiences.

    You have the right to insist on it or go elsewhere.

    I work in an inner city hospital and our patients are sedated. My point is this is not something new.

    Karen
    Original scoliosis surgery 1956 T-4 to L-2 ~100 degree thoracic (triple)curves at age 14. NO hardware-lost correction.
    Anterior/posterior revision T-4 to Sacrum in 2002, age 60, by Dr. Boachie-Adjei @Hospital for Special Surgery, NY = 50% correction

  9. #69
    Join Date
    Nov 2004
    Location
    fl
    Posts
    73
    Hi All,
    Nancy I hope all is well today. I stayed up late to read about fusions and this cage that they are putting in. I got alittle curious to were they will get the bone to fuse it. I also came across a few sites that were very informative about lumbar injections. It enlightened me on those epidural injections and I don't know if I will ever agree to them. LOL.

    Karen how are you doing? These doctors the do the injections seemed very over confident. The one said I have done 100's of these without one having a spinal fluid leak. I have no clue as to why it didn't seal. I wonder if people who have DDD (degenerative disc disease) have those problems too.

    I wish they would quit referring to injections as bee stings. I started to laugh when they said that to me I thought that might work on a child not on me I have never been stung in the back. Plus my daughter hates shots and now she is terrified of bees.
    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

  10. #70
    Join Date
    Sep 2003
    Location
    NJ
    Posts
    1,291
    Krystal:

    I am doing well. I never had the injections because I needed the surgery; nothing else was indicated. I was able to control the pain with Pilates.

    I did have a myelogram 20+ years ago. They gave me a sedative pill before it and numbed the skin beforehand.

    I have no pain now.

    Karen
    Original scoliosis surgery 1956 T-4 to L-2 ~100 degree thoracic (triple)curves at age 14. NO hardware-lost correction.
    Anterior/posterior revision T-4 to Sacrum in 2002, age 60, by Dr. Boachie-Adjei @Hospital for Special Surgery, NY = 50% correction

  11. #71
    Join Date
    May 2004
    Location
    Southern Illinois, USA
    Posts
    55

    Julia Heaven

    Hi All ~ Under the thread "I tried to commit suicide in the hospital", Julia has never responded. She wrote on June 3, 2005... almost 2 weeks ago... and I haven't seen a post from her since then. Has any one out there heard from her? I'm sure worried about her... I just need to know that she's OK... 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

  12. #72
    Join Date
    Apr 2005
    Posts
    913
    Irene...

    I know what you mean about Julia, I do worry too. I would think if she logs back in this forum and sees what we all have posted to her, that she would respond to ease our worries, but as I checked in her profile, she hasn't logged in since June 3rd, the day she posted that thread. Maybe she's taking care of herself and hasn't been online. Maybe a private e-mail to her would reach her, if she checks her e-mails, who knows.

    Hope you're doing all right Irene
    Last edited by sweetness514; 06-17-2005 at 03:03 PM.

  13. #73
    Join Date
    Nov 2004
    Location
    fl
    Posts
    73
    Just to let you know I sent Julia a message. She received it but didn't respond. I am assuming she is ok.

    Hope everyone is doing better.
    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. #74
    Join Date
    May 2004
    Location
    Southern Illinois, USA
    Posts
    55

    Thank you!

    Thank you Nancy (Sweetness), and Krystal... I'm going to try and send Julia a "private" note myself. Last time I tried, it didn't work. I'll try again!
    ~ 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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