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  1. #1
    Join Date
    Sep 2016
    Posts
    21

    Joyce B

    I'm new to the forum today. I need some help please. I'm a 66 year old female who had thoracic scoliosis, probably before age 10. I don't believe that my parents understood the severity of my condition.to. They finally took my to a local Phila. ortho when I was 14 who put me in a Milwaukee brace. I wore it for a year as my curvatures worsened. My mom heard about a chiropractor who had a great reputation. I saw him 3 times a week. After 3 months, my X-rays showed actual improvement. I continued with the awful brace and chiropractic treatments until I was 15, when my chiropractor suddenly died. At that point, I put my brace in the closet and nothing more was done. I graduated high school, started working, had a great insurance plan, and decided to pursue surgery. I don't recall the exact degrees of curvature, but they were significantly over 70. I saw Dr. Anthony DePalma at Jefferson Hospital in Phila. in the Spring of 1969. I was scheduled and had surgery in Aug. 1969. I was in the hospital for 2 weeks, in a body cast in a hospital bed in my mom's living room for six months, the back to the hospital to learn how to walk again. I wore a walking cast for another six months. A year later I returned to work. Despite some occasional discomfort, and getting used to my fusion/rod, I was fine. Fast forward 13 years, my husband and I had one beautiful daughter (natural childbirth, no scoliosis & getting married this year), I got my real estate license in NJ, and life was great. Fast forward another 22years, I began having significant lower back pain in 2004. By Feb 2005, I made an appointment to see a local orthopedic surgeon. After X-rays, he said "it's not a matter of if you need surgery, but when." I was devastated. After much deliberation, I chose to go back to Jefferson Univ Hosp in Phila, and saw Dr. Alexander Vaccaro. We scheduled my adult scoliosis revision surgery for July 17, 2006. The initial prep surgery was performed on Monday, then the major surgery was performed on 7/19/06. That's where the problem began. Somewhere after 6 or 7 hours into the surgery, my blood pressure dropped, and Dr. Cohen and the trauma team brought me back. I don't remember much, was in the NICU on a ventilator for 17 days, then slowly came back. I was admitted to a rehab center near my home in Mercer County, NJ, for another 2 weeks, then went home. There were many months of therapy, physical, neurological, and occupational. I am fused from T-2 to the sacrum. I could never return to work due to my new physical disabilities. I had immediately dipped into a deep depression. I needed narcotic pain management after physical therapy caused (in my opinion) sciatica in my right leg. After six months of "recovery" I began Aqua-therapy. It helped with my physical stamina, and I could eventually walk without a cane. In 2012, we moved to the gulf-coast of Florida. I forgot to say that I have a wonderful husband who does so much for me, and is great support, too. Since moving here, my overall stamina and ability to walk (even a block) has diminished. Then last year, I fell on a ceramic tile floor and fractured T-5, was hospitalized, then to rehab for about 2 months, and in a back-brace for stabilization for 6 months. When you are accustomed to health care in the Northeast, I must say that Florida's care is sub-standard. I do have regular check-ups with my internist, blood work, cardiologist visits & testing, etc. My concern is this - I
    have little or no energy, difficulty walking unassisted, difficulty walking very far even with a walker. I have some difficulty with balance, too. I sent myself back to Aqua-therapy, but after 6 weeks or so, I saw no improvement. Where do I go from here? I DONT want further surgery. Where can I go for help? Someone with knowledge, please help me. I'm too young to waste away!

  2. #2
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    3,557
    Joyce

    I wanted to welcome you to the forum. You have quite a history....and have done your battle.

    You know they started doing stem cell injections in the US. There are neurologists doing these, and there are testimonials out there that are hard to ignore. I think that we need to be aware of things like this......I like to believe that there is hope and healing.

    https://www.youtube.com/watch?v=iRSHT89uvws

    I am also formerly from NJ

    Keep posting

    Ed
    49 yr old male, now 59, the new 55...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  3. #3
    Join Date
    Dec 2008
    Location
    illinois
    Posts
    766
    Ed great post. It gives hope to so many.
    T10-pelvis fusion 12/08
    Fractured t-9 six days out of surgery
    C5,6,7 fusion 9/10
    PJK at t-9
    T2--T10 fusion 2/11
    Removal of left side t6-t10. 8/14
    C 4-5 fusion 11/14
    Right scapulectomy 6/15
    Right pectoralis major muscle transfer to scapula
    To replace the action of Serratus Anterior muscle 3/16

  4. #4
    Join Date
    Sep 2016
    Posts
    21

    Exclamation Thank you Ed!

    Quote Originally Posted by titaniumed View Post
    Joyce

    I wanted to welcome you to the forum. You have quite a history....and have done your battle.

    You know they started doing stem cell injections in the US. There are neurologists doing these, and there are testimonials out there that are hard to ignore. I think that we need to be aware of things like this......I like to believe that there is hope and healing.

    https://www.youtube.com/watch?v=iRSHT89uvws

    I am also formerly from NJ

    Keep posting

    Ed
    The stem-cell avenue is very interesting and impressive. I'm not sure if it could help me. But like the much younger woman in the video, I can't run, Nike, lift, or hardly walk unassisted. I have to look into this. Where did you live in NJ? We lived about six miles east of Princeton. It sounds like you have done similar battles!

  5. #5
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    3,557
    Quote Originally Posted by Joyce B. View Post
    I'm not sure if it could help me.
    Were not completely sure if anything can help us.......but the modalities that we do have, “do help most of us”.....

    Living with scoliosis can be a grab bag of different options, depending on our wants and needs, depending on pain and severity. Having this new stem cell choice, is another option that may not be completely proven today, but like anything else, like the progression of scoliosis events through the years, is something that I am extremely hopeful with. We can only stay hopeful, as we were when we submitted to major scoliosis surgery. We all remember how hopeful we were....Maybe, I will remind everyone from now on, even myself....

    I grew up in Wayne, then moved to Bergen county.....ignoring my scoliosis back then as an adolescent. Moved out west for skiing in 1980.....

    If you or anyone do decide to pursue stem cells, please let us know as we are EXTREMELY interested. There are neurosurgeons in Los Angeles that are active and they have DDD Degenerative disc disease listed.

    Hang in there Joyce

    Ed
    49 yr old male, now 59, the new 55...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  6. #6
    Join Date
    Sep 2016
    Posts
    21
    I've submitted twice, first to extensive surgery, then to adult revision surgery, by supposedly one of the top
    neuro/orthopedic spine surgeons in the country. But it hasn't taken away my pain or given me my life back. I guess this is not the place for help if one has anything negative to say. Thank you.

  7. #7
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    3,557
    Joyce, we are getting mixed up here with multiple threads.......its probably best to simply keep everything on this thread.

    There are plenty of revision patients here in pain and there are similar testimonials to yours.....

    Yes, that’s a T2-Pelvis construct you saw on my Twisting limitations thread, did they fuse you to the pelvis on your revision?

    Also, very interested in any details you have on your 1969 surgery, any photos or even x-rays from back then? I couldn’t imagine doing the cast method. There are a few “cast scolis” here, Karen Ocker is probably our most senior member, she was done around 1958 by Dr Cobb.

    I have no problems sleeping, or doing most things. My neck is vey crunchy these days, My description of cervical herniation’s can vary from day to day, today, I will use the word “crunchy” (smiley face)

    Ed
    49 yr old male, now 59, the new 55...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

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