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Thread: A newbie to the forum.......

  1. #1
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    Question A newbie to the forum.......

    As a long time scoliosis patient, I've done a lot of reading on this site and have been truly impressed with the knowledge and caring by all!! Hopefully you'll have some advice to pass along.....

    Here's my short history:
    A rural farm girl from mid Michigan, diagnosed with scoliosis ("S" curve of 36 and 45 degrees) at age 17 in 1972 at Henry Ford Hospital in Detroit. A Harrington rod was recommended, but my parents wanted to try the Milwaukee Brace instead....which I wore until age 19 and in college. Yes, it was the BIG monster with the metal head posts along the back of the skull and the chin rest, etc. I wore it 23 out of 24 hours every day for two years. My lower curve was reduced to 26 degrees. I finished college, worked, married, had two lovely daughters, and tolerated the growing curve and pain well through the years with exercise and a busy work schedule. I had L2-L4 fused around age 24 or 25. At age 35, the "hump" on my back was growing larger, and my lower curve measured 68 degrees. I started visiting some doctors and getting advice. At age 45, I took the plunge and had spinal fusion with instrumentation done from S1 to T11 with great success by Doctor Herbert Roth, Beaumont Hospital in Troy. The pain and discomfort was greatly reduced for many years. I then had cervical fusion with instrumentation done in 2011, C4, C5 & C6. Again, great success. Due to increasing pain and "flat back" syndrome (even with the rods, my curves are 39 and 48 degrees), I'm now looking at revision surgery with Dr. Patel at University of Michigan Hospital in Ann Arbor, S1 to T7 or T4. I would love to return to Dr. Herbert Roth, but he has retired. :-(

    I meet with Dr. Patel February 2nd to discuss the surgery, as I have more questions. I'm a high school secretary - 60 years old - and was told I could return to work in three months??? Really??? I'm a front desk secretary who is constantly up and down, squatting, bending, etc. I was off 6 months after my fusion 15 years ago, and I was much younger. Dr. Patel said this surgery will be much worse because of having to remove all the old bone and fusions, rods, etc.

    I would love to hear ANY and all advice you can offer on time off work, recovery compared to prior surgery, information on doctors, etc. Technology has changed so much! Also, I exist on just cymbalta, ibuprofen, tylenol for arthritis, etc. I have trouble sleeping at night due to the pain. Any ideas or suggestions there? I do not like to take any narcotics as they make me sick to my stomach.

    I'm so excited to have found all of you!!! I look forward to your responses!

  2. #2
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    Hi...

    There seems to be a vast range in terms of recovery rate. On average, the majority of patients who have complex spine surgery get back to work between 3 and 6 months postop. This is purely a guess, but I'd say somewhere around 10-15% of patients take more than 6 months (or never return to work), and about 10-15% take < 3 months.

    Surprisingly, sitting can be very difficult after spine surgery. Jobs that require gentle movement are much better than those where one needs to sit for long periods of time.

    Good luck with your revision.

    Regards,
    Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Dilbert
    I'm sarcastic... what's your super power? --Unknown
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    If you've signed up and are having trouble posting, please check your spam folder. An email was sent to the email address which you subscribed. You have to follow the instructions in that email. Done that and still having trouble posting? Contact Joe O'Brien at jpobrien@scoliosis.org.

  3. #3
    Join Date
    Jan 2012
    Location
    Yacolt, WA
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    1,525
    Can you return to work on a reduced schedule/hours?
    Susan
    Adult Onset Degenerative Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Severe disc degen T & L stenosis

    2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 in 2 surgeries
    2014: Hernia @ ALIF repaired; Emergency screw removal surgery for Spinal Cord Injury at T4,5 sec to PJK
    2015: Revision Broken Bil T & L rods and no fusion: 2 revision surgeries; hardware P. Acnes infection
    2016: Ant/Lat Lumbar diskectomy w/ 4 cages + BMP + harvested bone + prayer

  4. #4
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    Michigan
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    No, I cannot return part time. I wish I could!!!

  5. #5
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    Connecticut
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    we have a few similaraties

    Quote Originally Posted by SewBzzzy View Post
    As a long time scoliosis patient, I've done a lot of reading on this site and have been truly impressed with the knowledge and caring by all!! Hopefully you'll have some advice to pass along.....

    Here's my short history:
    A rural farm girl from mid Michigan, diagnosed with scoliosis ("S" curve of 36 and 45 degrees) at age 17 in 1972 at Henry Ford Hospital in Detroit. A Harrington rod was recommended, but my parents wanted to try the Milwaukee Brace instead....which I wore until age 19 and in college. Yes, it was the BIG monster with the metal head posts along the back of the skull and the chin rest, etc. I wore it 23 out of 24 hours every day for two years. My lower curve was reduced to 26 degrees. I finished college, worked, married, had two lovely daughters, and tolerated the growing curve and pain well through the years with exercise and a busy work schedule. I had L2-L4 fused around age 24 or 25. At age 35, the "hump" on my back was growing larger, and my lower curve measured 68 degrees. I started visiting some doctors and getting advice. At age 45, I took the plunge and had spinal fusion with instrumentation done from S1 to T11 with great success by Doctor Herbert Roth, Beaumont Hospital in Troy. The pain and discomfort was greatly reduced for many years. I then had cervical fusion with instrumentation done in 2011, C4, C5 & C6. Again, great success. Due to increasing pain and "flat back" syndrome (even with the rods, my curves are 39 and 48 degrees), I'm now looking at revision surgery with Dr. Patel at University of Michigan Hospital in Ann Arbor, S1 to T7 or T4. I would love to return to Dr. Herbert Roth, but he has retired. :-(

    I meet with Dr. Patel February 2nd to discuss the surgery, as I have more questions. I'm a high school secretary - 60 years old - and was told I could return to work in three months??? Really??? I'm a front desk secretary who is constantly up and down, squatting, bending, etc. I was off 6 months after my fusion 15 years ago, and I was much younger. Dr. Patel said this surgery will be much worse because of having to remove all the old bone and fusions, rods, etc.

    I would love to hear ANY and all advice you can offer on time off work, recovery compared to prior surgery, information on doctors, etc. Technology has changed so much! Also, I exist on just cymbalta, ibuprofen, tylenol for arthritis, etc. I have trouble sleeping at night due to the pain. Any ideas or suggestions there? I do not like to take any narcotics as they make me sick to my stomach.

    I'm so excited to have found all of you!!! I look forward to your responses!
    Hello.........my name is Carol and I'm very very new to this site......still not even sure if I am doing this right. I have a hunch I'm going to wish I had gotten to this site earlier. So anyway...........I am almost 60 as you are, and I am also a secretary in a high school I have been secretary to the principal of our fairly larger (1200 students) high school for about 18 years. I had spinal fusion surgery w/correction for my scoliosis May 2015. Iwas fused T6 to L4. Long story short (I'll go into a few details later).......but it have not been able to go back to work......and most likely will not be going back because I am facing a revision surgery (yep, after only 7 months). I have pretty much given in to the fact that I won't be able to go back to work after my next surgery (scheduled in two weeks).......just not going to happen.....too much recovery to get through. I'm pretty much ok with it, have figured out my finances and although it will be tight, it will be ok.
    I'm going to look into this site on how to seek support for my reason for needing revision surgery. Let me try to make this short.........it seems I am allergic to the stainless steel rods my doctor used. I didn't know he was going to use stainless......I would have told him I am allergic.........i didn't find out about the stainless that was used until 2 months ago. I went to see my surgeon because I am in tremendous pain.......pain pain pain all day long. It just didn't seem right to me......so at my 6 month check up I asked the doc what could be wrong. That is when he told me about the stainless. I am flabergasted.......and have not been able to find much information on similar cases as mine.......so I am hoping to find here, someone else who may have had this problem.
    Sorry for such a long reply. Good luck with your revision.............and if you can plan a way to not go back to work.......you deserve the recovery time...sincerely, Carol

  6. #6
    Join Date
    Mar 2014
    Location
    Michigan
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    Question Thank you!

    Thank you, Carol, for your words of wisdom! Nice to see another High School Secretary in the group.

    Stainless Steel? I thought all they used was Titanium? I know my existing rods are Titanium. I guess I should ask what they plan on using this time! How did you finally find out you were allergic to the Stainless?

  7. #7
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    Quote Originally Posted by SewBzzzy View Post
    Thank you, Carol, for your words of wisdom! Nice to see another High School Secretary in the group.

    Stainless Steel? I thought all they used was Titanium? I know my existing rods are Titanium. I guess I should ask what they plan on using this time! How did you finally find out you were allergic to the Stainless?
    It really depends on the surgeon. Titanium is brittle, and actually will break faster than stainless steel. The advantage to titanium (and cobalt chrome) is that it interferes less with MRI images. Unfortunately, these metals still cause artifacts on the images, so the value isn't cut and dry.

    --Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Dilbert
    I'm sarcastic... what's your super power? --Unknown
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    If you've signed up and are having trouble posting, please check your spam folder. An email was sent to the email address which you subscribed. You have to follow the instructions in that email. Done that and still having trouble posting? Contact Joe O'Brien at jpobrien@scoliosis.org.

  8. #8
    Join Date
    Oct 2007
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    Indiana
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    Hi SewBzzzy! Welcome to the forum! I don't know if what I say may be a help or not, but I'll go ahead. I had my surgery, T2-L4, when I was 56. I was the elementary school librarian, and I'm sure my surgeon thought that is something like where you just sit and check out books... NOT! I was actively preparing for and teaching 20 classes/week, the library is the hub of the school and huge, and was open for students any time I didn't have a class. I was up and down doing bulletin boards, reshelving books, had lunch and recess duties, etc. We had a circulation of at least 200 books/day... Anyway, this is what my timeline/ schedule was. I had my surgery in earlyish May thinking the summer would be plenty of recovery time. Ha! No way, Jose. So next I applied for medical leave for the 1st semester. By early November they wanted to know if I'd be ready when 2nd semester started in January and I sure didn't know but had to make a decision. I ended up taking the 2nd semester off also and was sooooo glad I did. I had a hard enough time when I did start back the following school year, but managed. (I would go straight home and take a nap and my wonderful husband often did the cooking...) I have never considered myself a wimp, but my surgery really weakened me.

    EVERYONE is so different -- and many have returned to their jobs fairly quickly. Others have taken much longer. I am glad that I took medical leave for that long and it worked out. My job also was one where you had to jump back into the whole shebang; all or nothing. If you can ask about one semester with the option of either returning or of taking off the 2nd semester, that might also work for you. They might let you go in and "test" yourself by shadowing your replacement at some point to see if you could actually hack it or not.

    BTW - I have stainless steel. There are pros and cons, as Linda said. I am so sorry to hear of Carol's allergy to hers and the need for revision surgery. What a bummer.

    One last thought, and that is that it keeps getting better. Each year you should, barring complications, keep getting stronger and more able. You will have to adjust the way you do many of your tasks. But I improved and was so much stronger after the 2nd year, and even more the 3rd year, etc. Best wishes!
    66 and still heartbroken...
    2007 52 w/ severe lumbar stenosis & L2L3 lateral listhesis (side shift)
    5/4/07 posterior spinal fusion T2-L4 w/ laminectomies and osteotomies @L2L3, L3L4
    Dr. Kim Hammerberg, Rush Univ. Medical Center in Chicago

    Corrected to 15
    2014 DXd w/CMT (type 2)

    Click to view my pics: pics of scoli x-rays digital x-rays, and pics of me

  9. #9
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    Can anyone help me with using this site........I would like to see if I can find others who have had metal allergy reactions with their scoliosis fusion surgeries.
    As I said yesterday, i am new to this site and I'm not quite sure how to search/seek out others in my situation. I'd appreciate any help.

    Thanks so much,
    Carol

  10. #10
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    Quote Originally Posted by SewBzzzy View Post
    Thank you, Carol, for your words of wisdom! Nice to see another High School Secretary in the group.

    Stainless Steel? I thought all they used was Titanium? I know my existing rods are Titanium. I guess I should ask what they plan on using this time! How did you finally find out you were allergic to the Stainless?
    After my surgery last May......naturally I had a lot of pain. The weeks and months were rolling along and the pain was not decreasing........and then I started to feel as if it were 'increasing'..........just not getting any better at all. For the last 3 months or so, I am in extreme pain.......just aweful. I am still taking the same narcotics as when I got home from the hospital. I had been taking a lot of tylenol but got off of that because it made no difference.
    I've seen doctors for pain management........I've been going to PT.........but nothing at all is helping.
    finally at my 6 month check up my surgeon asked me if I was allergic to jewelry. I said 'yes, I have to wear hypoallergic earrings....nickel free'.......and that's when he told me that I might be allergic and that he indeed used stainless steel. My jaw just about dropped to the floor........he said he could replace the rods with titanium..........but OMG, that can't be an easy task. I am petrified.......two weeks from today is my surgery and i am so scared.

    I would love to find someone who has gone through this........I cannot be the only one out there.

  11. #11
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    Hi Carol,

    Apparently sensitivity to metals on the skin does not translate to implanted metals according to a Duke guy... please see this video with that reference.

    https://www.youtube.com/watch?v=nP773c0HrHk

    So your pain might be from something else. Getting rods replaced for a reason that may not be correct will not help your pain.

    Good luck.
    Last edited by Pooka1; 01-15-2016 at 01:26 PM.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  12. #12
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    I have seen that video by Dr Hey before..........i wish he told a little bit more about why he feels that is true. Have you ever heard of the book "Steel Standing" ? It is about a woman who was allergic to her metal implants .....she had an amazing story but long story short, once her metal was 'changed out', she recovered fully.

    I have read several articles on medical websites such as "Medscape" which talk about cases of metal allergies........so I do not believe what that doctor in the video says.

    My own surgeon was the one who suggested that I my pain may be due to my being 'allergic' to the rods. I'm still hoping that this NSF site can help me find others who have had this problem.

  13. #13
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    Well I did a short review and I think the results are all over the place. It seems at least possible you are allergic to the SS implants. I hope revision solves your pain.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  14. #14
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    http://reference.medscape.com/medline/abstract/26189276

    The above link is a warning to surgeons about metal implants.

    A co-worker of mine.....said his mother had a stainless steel implant in her ankle and had terrible problems....once they removed it, she was fine.

    Also, as I stated, the book "Steel Standing" is a true testament to metal allergies within the body. Sadly, the author does not take personal correspondence as she was getting too much to handle, otherwise, i would have tried to speak to her. I have found a few people to provide support and will continue to look.

    On the other hand, I doubt my surgeon would be able to get clearance from my insurance to do such a drastic surgery if he did not believe this were the problem.

    Please, if there is anyone out there with similar problems, I look forward to hearing from you

  15. #15
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    I have found the subject to be 'all over the place' as well. Thanks

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