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Thread: Joyce B

  1. #1
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    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
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    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 58, the new 53...
    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
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    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
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    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
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    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, ďdo help most of usĒ.....

    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 58, the new 53...
    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
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    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
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    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, thatís 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 couldnít imagine doing the cast method. There are a few ďcast scolisĒ 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 herniationís can vary from day to day, today, I will use the word ďcrunchyĒ (smiley face)

    Ed
    49 yr old male, now 58, the new 53...
    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

  8. #8
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    Ed, the confusion with the threads is my fault - not very proficient using this site yet. Unfortunately, I have no X-rays from 1969. That surgery was from T-2 to just above my waist (sorry don't know the level) with Harrington rod, tibial bone grafts, etc. The 2006 revision surgery was from T-2 to the sacrum, the very bottom tip of my spine. I have all of my X-rays from Jefferson, and CAT scans from last year when I fractured my spine. You probably won't believe this, but I have never looked at them. They would make me I'll. I have many limitations. The reason I have reached-out is because of my limited ability to walk as I have in the past. I remember talking to Karen O. after my '06 surgery. She was extremely helpful and supportive. I believe she is/was a nurse who went back to work after her surgery - something I was told I would be able to do by my last surgeon, tried, but could not continue. What specifically would you like to know about the 1969 surgery? (If I can recall &#128522. Joyce

  9. #9
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    Ed,
    I forgot to mention that I could not access your pictures of bending and twisting. I was able to open the link to your neutral standing X-ray, but not the others. If you could perhaps send to me, I will try to view them again. Thanks, Joyce

  10. #10
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    Joyce, You did do pretty good for all those years from 1969 to 2004. Roughly 34 years. I always think about what would have happened to me since I was a surgical candidate back in 1975. I didnít have the confidence conveyed at that stage, amazing how a kid can pick up on these things and make a judgment call on something as complicated as scoliosis surgery. Besides, I just wanted to keep skiing so I waited....

    Since you have sciatica, this kind of narrows it down to some sort of nerve impingement or disc related problem in your lumbar spine. You didnít have this before with your old setup. I had brutal sciatica before my surgeries that I battled for around 6 years and it did eventually drive me into surgery. My L5 was not looking too great, and in a 70 degree curve starting low right off the sacrum, I knew there was no choice in fusing me all the way to the pelvis. It all worked out great....my surgeon just smiles and shakes his head no repeatedly, since he was convinced that something was going to go wrong.....He rejected me and made me beg for my surgeries. They went in from the front, then 2 days later flipped me over and did the posterior.

    When we have nerve problems, they can really mess with the whole package so I can understand how you feel. To go into a tough revision and have all your old hardware broken out from the bone, and have a full rack installed is quite a demanding procedure. There are factors that are beyond even the best surgeons control, so there is an element of risk. I also felt like my whole nervous system was electrically hampered, and felt extremely lethargic right before I went in. I had multiple pain producing problems, so anything was going to be an improvement.

    There are posters here that have done well and some have had revisions that have continuing pain......Several come to mind, like yourself, and itís a hard thing to see others in such pain. I can understand not seeking anymore surgery especially after your low blood pressure episode. I have read that blood pressure does drop when we are put under so it justifies the delicacy of any surgery. Its always a really hard decision....

    I used hot water soaks for pain before and after my surgeries. 106 Degrees F and I would check it with a pool thermometer before getting in. Scalding hot water works quite well on bone and nerve pain. A deep tub is needed so you can float. Prescription NSAIDís also work well for this kind of pain, but these medications really need to be controlled as there is always some sort of tradeoff.

    I see that the photos of me bending and twisting are gone. This was likely due to a software update. How predictable......I will have to look for them as they are on one of my old computers. I also have to run that machine through all the new win 10 updates that have happened here recently. I should get this done in a few days...

    I found a video of me skiing after my surgeries, Iím in the red jacket. This was filmed up by Lake Tahoe in Jan 2011.
    https://www.youtube.com/watch?v=4tEypv3Vz8o

    Try to hang in there....

    Ed
    49 yr old male, now 58, the new 53...
    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

  11. #11
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    Hi Ed, I just watched your video - you are amazing! and truly blessed! One would never suspect that you have been through such a difficult surgery bc you have had such a great outcome! I know I did very well for a very long time - that's what makes it so difficult to have limitations now. I also often think of how I might be if I did not have both surgeries. We, and many others, might not be here today. And yes, as a young person, it was a difficult decision to proceed with the first operation. But nothing was as difficult as having to go through with an even more-complicated revision surgery. I was given a 25% chance of complications and even death! which sort-of occurred. After that physical and psychological ordeal, (I have lost one month of memory, too), I made the mistake of believing it was behind me, and that I would continue to improve. Not the case.

    The hot soaks would feel great, but I can't get out of my tub bc it's an over-sized soaking tub! 😊 I also
    have arthritic knees and will probably need at last one replacement in the next few years!

    I followed up on your post about stem cells. Interestingly, I read an on-line article by Dr. Cunningham at Hosp. For Special Surgeries. In the article, he discussed the many conditions and modalities we're all too familiar with, but what really piqued my interest was information about scar tissue, stenosis, etc. possibly causing imbalance and limitations in walking. When I fell last year and fractured T-5, it was due to losing my balance and falling backward. Sounds like he might be the man to see?? in addition to a second opinion. Do you think I would be wrong to go back to Dr. Vaccarro for a second opinion, since he has all of my records and MIGHT remember me and my case?


    My sciatica was treated with Lyrica for several years, then I started having some strange vision problems. So, I weaned myself off of Lyrica, the vision problems went away, and the sciatica is tolerable. I also have been on narcotic pain meds for years! Over the last few years, I began to feel over-medicated. Despite my objections to this drug, the Pain Mgt. Group said I would have to remain on it for the remainder of my life.
    I didn't like that. I wondered how I would know if my pain was still as bad as it had been for years. The only way I could know that was to wean myself off of the med. I have been doing that very slowly, and I have reduced from 30 mg daily, and now I am down to 5 mg. daily. I find that my pain levels come-and-go, especially if I get over-tired, and I'm hoping to get this drug completely out of my system over the next week!

    I understand about the IOS10 update. I just updated my iPhone 6, and I lost pictures & videos!
    I'm hanging in there, thanks. Just scared to take that next step, which could lead me down the path that I never want to take.
    j

  12. #12
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    Quote Originally Posted by Joyce B. View Post
    Do you think I would be wrong to go back to Dr. Vaccarro for a second opinion, since he has all of my records and MIGHT remember me and my case?
    This is an excellent question and would love to hear from other members here on this matter....there are a lot of revision patients on this forum.....and ďsometimesĒ it is best to move on.....you would only know after meeting with someone highly capable.

    Your going to need a top notch scoliosis revision surgeon. No matter who you see, they will shoot all new diagnostics....Also, sometimes its best just to go in and donít say too much and listen. I liked the fact that my surgeon thought about my case for so long....and believe me, they think deeply about our cases. I would expect to have a few visits over a few months if you commit. Also, nice to entertain a smaller approach since you probably have just one or two pain producing areas. Scar tissue can be a problem....it also makes revision surgery a delicate matter. Dr V could have solved most of your problems and you are living with just a few issues....I am assuming you donít have any infections because the other doctors would have caught it by now.

    HSS or Hospital for Special Surgery sounds pretty good to me, or UCSF where Linda works. Linda our moderator works with some of the best scoliosis surgeons at UCSF in San Francisco, and meets many scoliosis surgeons at different spine meetings. My surgeon trained at TCSC Twin Cities Scoliosis Center, its where the SRS was founded and many top scoli surgeons rotate through....This weighed heavily on my decision because I knew all about its history in excellence as far as scoliosis is concerned.

    It sounds like you do want to turn the page. Internet communication is a difficult thing, so its good to hear that your are open and determined to proceed and explore the options. The stem cell option is great, but you really need to be seen by a scoliosis surgeon with revision experience.

    I have never been very tolerant of taking any kinds of medications....I can go ahead and slam meds in general, and post the data, not a problem. Some say take your meds, I had it done to me, and yes, at that time it actually was the right thing to do...... I have taken a few blacklisted drugs, read the fine print and well, what can I say? Double edged sword? Yes and no. I am also a teetotaler.

    I donít know who is in Florida, maybe Linda knows. Where are you at in Florida? Panhandle?

    Also, are you leaning? Can you stand up straight?

    Glad you enjoyed the skiing....Going on my 55th year now...My original teacher when I was 3 is on her 90th year, so I still have a few runs left......She has to be one of the oldest skiers in the world.

    Ed
    49 yr old male, now 58, the new 53...
    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

  13. #13
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    Sep 2016
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    Ed,
    I would also like to know what other members think about my question. My surgeon is at the Rothman Institute at Jefferson Univ. Hosp in Philadelphia and is highly rated. I did my research prior to my revision surgery, and in all honesty Ed, I do not blame him or anyone with what happened to me. Maybe I am naive, but I believe it was the luck of the draw. But, I am still here.

    I guess having been through revision surgery...I didn't realize I might need revision revision surgery! 😊

    I would only explain my difficulties, and wait and listen, and make NO hasty decisions.

    I don't believe there are any infections, as I have been seen by several doctors, including a neurosurgeon when I fractured my spine last year. What is so frustrating to me now, is that my balance problems and walking limitations probably caused that fall.

    Born and raised in Philadelphia, my first surgery was at Jeff, our daughter was born there, so there has been a comfort level "going home."

    Regarding the meds, I agree with you. My pain was so severe for a long time that I had no choice. But when I started questioning Pain Mgt about the possibility of weaning, they pooh-poohed it. Now I'm at 2.5 mgs,
    and sincerely hope to be free of it within a week or two. I'm a teetotaler too.

    We're on the gulf coast of Florida about a half-hour south of Sarasota. I'm not interested in anyone in Florida. As I mentioned previously, I think health-care here is sub-standard compared to my experiences in the northeast.

    Yes, I stand erect, no leaning -I never have. Actually, my revision correction made a huge visible difference.
    My head is centered over my shoulders and hips!!! Sounds funny doesn't it? Also my "hump" is almost gone. So there are some good things to say.

    I am impressed about your skiing, and that your instructor is still skiing at 90! God willing, you will also be skiing at 90! Ed, thanks for talking with me. It really helps to speak honestly with someone who has been there. Best regards, Joyce

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