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Thread: I've been reading the form since Sept. & learning so much.

  1. #1
    Join Date
    Aug 2013
    Location
    Sarasota, FL
    Posts
    9

    I've been reading the form since Sept. & learning so much.

    I was diagnosed with scoliois at about 13 yrs & worked with a physical therapist for about 2 wks. Growing up I learned how to stand to compensate for uneven shoulders & to dress to hide the beginning of a back hump. I was fortunate that I sewed many of my own clothes & was able to adjust patterns so clothes fit ok. I didn't think much about scoliosis since I had been told that once I was full grown it would not worsen. After the birth of my 1st child I felt the curve had gotten worse but was unable to locate xrays from adolescence. The dr I consulted at that time felt it was a result of me being tiny & having a very large baby & the extra weight. My 2nd pregnancy didn't seem to affect the curve. After menopause I felt the curve was worsening & went to an orthopedic surgeon. The xrays showed an 80 degree thoracic curve & a 48 lumbar. I was not experiencing any pain & was physically active & was told the risks of surgery were not worth undertaking it. I accepted it & went on.
    I retired from education & we retired to FL from PA 3 yrs ago. Since moving I have become more aware of the scoliosis & have became increasingly self-conscious of my appearance. My sister who lives in Atlanta had seen advertisements for a Spinecor brace so decided to give it s try. After paying $4500 for the brace, the chiropractor mentioned as an aside that I would need to wear it 24 hrs/day & would probably eventually still need surgery!! Not what I was expecting. Only positive result was new x-rays that showed curve now at 90 & 64 which confirmed my thoughts that the scoliosis was worsening.
    Followed this with an appt at Duke. The doctor there said he would not do the surgery since the pain was not that great & if I insisted on it he would recommended I see Dr Lenke. I had previously scheduled an appt at Emory so went there after Duke. That dr there said she would do a fusion to stabilize the curve but would not attempt any correction.
    I then discovered this forum & researched & read everything I could. To make a long story short I finally obtained an appt with Dr. Lenke for 12/18. I am praying that he will do the surgery. My main concern is the most recent result from a Dexascan that showed my osteoporosis had worsened. My family dr has placed me on a regiment of Prolia & Forteo. I hate the thought of having to wait 2 yrs to complete this drug course before surgery would be done since I just turned 65.
    I can't begin to express my appreciation for all of you who post on the forum!! You have truly been an inspiration & a wealth of information for me. A special thanks to "golfnut" who quickly responded to an email I sent her when one of her posts revealed Bradenton, FL(where I live & she was visiting-thinking she lived in the area). I often think I don't know what I would be doing without this forum - probably just resigning myself that I would have to live with scoliosis the rest of my life.
    Shari

  2. #2
    Join Date
    May 2008
    Location
    Central NJ
    Posts
    1,956
    Good luck with your appointment, you're seeing one of the best.
    __________________________________________
    Debbe - 50 yrs old

    Milwalkee Brace 1976 - 79
    Told by Dr. my curve would never progress

    Surgery 10/15/08 in NYC by Dr. Michael Neuwirth
    Pre-Surgury Thorasic: 66 degrees
    Pre-Surgery Lumbar: 66 degrees

    Post-Surgery Thorasic: 34 degrees
    Post-Surgery Lumbar: 22 degrees

  3. #3
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,595
    Hi Shari! Welcome! Sounds like you are on the right track getting more information. If you are "only" 65, you have lots of living ahead of you! Let us know how your appointment goes with Dr. Lenke.

    On one of my appointments, I went down to X-ray at the University Hospital and there was a crumbling older woman in obvious pain waiting her turn. In almost felt like she was there to show me what I would look like in 10 years if I did not have surgery. Unlike you, my scoliosis was due mainly to degeneration and I was in a lot of pain.

    I am unsure what your doctor meant by doing a fusion, but no correction??? I assume with your osteoporosis that you have some degenerative disc changes. Unfortunately, as we age, there can be degenerative changes that can eventually be painful. It will be interesting to see what Dr. Lenke says.

    Wishing you the best of luck,
    Susan
    Last edited by susancook; 12-09-2013 at 01:59 AM.
    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 2 surgeries
    2014: Hernia @ ALIF repaired; Emergency screw removal Spinal Cord Injury 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
    2018: Removal L4,5 screw

  4. #4
    Join Date
    Dec 2008
    Location
    illinois
    Posts
    871
    SHARI
    Welcome to te forum. It is a great place to share and learn. It has helped me in many ways. WHen I was trying to make up my mind before surgery,trying to recover, through many problems along the way. Also I feel very happy to have friends that really understand how this works.
    Write down your questions---go over them--make sure you understand a lot before even seeing the doctor. It helps when he is discussing what is needed for you.

  5. #5
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    4,131
    Shari,

    I find it amazing that you have a 90 and a 64 with no pain.....My twin 70ís produced maximum pain levels.

    Doreen had osteo issues before her surgeries, you might want to look her up.....I donít know if you have read her posts, if not, say so and one of us will link you up. Iím so tired right now....

    Welcome to the forum

    Ed
    49 yr old male, now 61, the new 61...
    Pre surgery curves 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
    Jan 2009
    Location
    Ames, Iowa
    Posts
    1,250
    Shari--
    Welcome to the forum. As you know you've come to the right place! Lots of very helpful and knowledgeable people here. I'm so glad you were able to get an appt. with Dr. Lenke. He's as good as they come. Good luck! Janet
    Janet

    61 years old--57 for surgery

    Diagnosed in 1965 at age of 13--no brace
    Thoracic Curve: 96 degrees to 35 degrees
    Lumbar Curve: 63 degrees to 5 degrees
    Surgery with Dr. Lenke in St. Louis--March 30, 2009
    T-2 to Pelvis, and hopefully all posterior procedure.

    All was posterior along with 2 cages and 6 osteotomies.

  7. #7
    Join Date
    Aug 2013
    Location
    Sarasota, FL
    Posts
    9

    Appt with Dr. Lenke

    I finally had my appointment with Dr. Lenke before Christmas. He was as great as everyone on the forum indicated - in fact all the people we had contact with in his office were great. He will do the surgery and it's currently scheduled for 6/30/2014. Needless to say after all my debating and hesitating, I now hate the thought of waiting for 6 months! I am probably my own worst enemy for imagining worst case scenarios. I will continue to keep up with the forum and am compiling all your suggestions, etc. The knowledge I've already gained from all of you can't be measured. Thanks again.

  8. #8
    Join Date
    Jun 2013
    Location
    Asheville, NC
    Posts
    79
    Hi, Shari,

    You are doing exactly what I did before I had my Surgery at Duke with Dr. Bagley. He said my case was an emergency due to quickly advancing neurological symptoms and did my surgery three weeks later. I so wish I'd had more time to organize my thoughts around surgery. There is a lot to do pre surg to get your home ready, and to get your body ready for surgery. I don't have osteoporosis, so that was in my favor. I have been going to a gym pretty regularly since I was in my thirties to lift weights, etc. I am told weight bearing exercise builds bone density. Walking is weight bearing. If you have not been exercising because of the scoli, see if your Doc can refer you to PT to get some muscles going. There is much more you can be doing as well. I wish I would have realized I'd have to go to a rehab place for a week of my hospital, I would have checked out some good ones close to home and arranged for a decent ambulance to take me there. Not doing so led to #2 & #3 nightmare experience of the ordeal. I could tell you the whole story, but I will save that for another time.

    You are doing a great thing for yourself by reading the threads posted. The I Am Glad I had the Surgery is great, too. All the stories are inspiring. There is thread for those who are a year out from surgery that is good, too.

    As for me, I am a six months out, and I am glad I had the surgery. I still have pain from surgery, but it is not as bad as I had before surgery!

    Good Luck!

    Wendy
    Wendy
    Fusion T6 to S2 with Dr. Carlos Bagley,
    Duke Spine Center
    Surgery Date June 21, 2013

  9. #9
    Join Date
    Apr 2012
    Location
    San Jose, CA
    Posts
    571
    Hi Shari,

    Congratulations on making the decision - this is the hardest part! I understand how you feel about waiting for 6 months - I also could not wait to have this surgery over and done with. But you'll get there. Keep busy, exercise if you can, and do NOT read scary stories. Just block it out. Now, only positive thoughts. You've made the decision and this takes a lot of courage. You'll get through it and will be stronger, healthier and will get a nice cosmetic benefit in addition to the whole package :-)

    I am ten months out and very happy with my outcome. All the pre-surgical pain is gone - I can walk and stand for as long as I want. My back muscles get tight sometimes, but it's not bad. It's nothing comparing to pre-surgical pain caused by standing over 5 min or walking. I can do anything I need to do albeit a little differently. I am back to work and pull long hours sometimes - my back does not bother me at all. I just forget about it when I am deep into number crunching and don't even pay attention to occasional tightness. The hard part about going back to work was mental - I felt that I was slower and not as sharp as before the surgery, but I think that I am picking up my speed now.

    Best of luck to you and ask all the questions you have. Try not to think about the surgery, but think PAST the surgery. Think off all the things you'd be able to do when it's over and how it will change your life for better.
    I am stronger than scoliosis, and won't let it rule my life!
    45 years old - diagnosed at age 7
    A/P surgery on March 5/7, 2013 - UCSF

  10. #10
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,595
    Shari- glad that you have made yo ur decision. You mentioned that you are worrying about the worst case scenario. We all go through that! I worried about dying, paralysis, continuing chronic pain, you name it, I thought that it was in my future. I read all of the "Sorry that I had surgery" thread many times. It made me nuts! Then I talked with Irina and she told me to have trust in my doctor. I even put dr. Hu's picture on the back of my phone over the word TRUST. Eventually, I decided that I would not die, so that one was off the table. Then, amazingly, 2 weeks or so before surgery, I somehow went into a state of calmness and decided to trust my doctor and let go. Ahhhhh......it felt really great! I went into surgery completely relaxed and trusting.

    I hope that you find peace with your decision. You are in good health and have an awesome surgeon. You will be fine!

    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 2 surgeries
    2014: Hernia @ ALIF repaired; Emergency screw removal Spinal Cord Injury 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
    2018: Removal L4,5 screw

  11. #11
    Join Date
    Aug 2013
    Location
    Sarasota, FL
    Posts
    9

    Surgery moved up!

    About a month ago I received a call from Dr Lenke's office moving my scheduled surgery from 6/30 to 7/7. At that moment 7 days seemed like 7 years. I have been a "basket case" about the surgery since it was scheduled in Dec. & finally approached my dr about a prescription for something to calm me. I go to an integrative practice where drugs are pretty much a last resort. The dr suggested I try a few hypnosis sessions first. Never having been hypnotized I agreed to try it. It really did help the anxiety & I planned to begin this wk to let casual friends know & discuss it more openly.
    This afternoon received a call about a cancellation on May 5. We will leave Sarasota 4/30 for the surgery!!! Though I have not accomplished everything on my "to do list before surgery" (I'm a little anal about preparation) I am truly thrilled it has been moved up. Have been running around scheduling flight, boarding dog, etc. this afternoon. I'm very fortunate children are grown & husband & I are both retired.
    Again thanks to all of you on the forum. I honestly don't think a day has gone by since Dec that I have not checked the posts. All the information, support, etc from it are priceless. I really doubt if I would have gone ahead with the surgery without it.

  12. #12
    Join Date
    Apr 2010
    Location
    Waterloo, IL
    Posts
    1,707

    Wonderful news!

    Shari,
    I am so happy for you that you got the call you've been waiting for. If you need anything at all, please call me. I live only 30 minutes from Barnes. You can finally get this surgery that you definitely need and move forward with the recovery mode instead of the extremely stressful pre-op mode. If you need me to post for you after the surgery, I would be happy to do so. Your husband can call me if he would like. We are all cheering for you! I'll give you a call this week.
    Karen

    Surgery-Jan. 5, 2011-Dr. Lenke
    Fusion T-4-sacrum-2 cages/5 osteotomies
    70 degree thoracolumbar corrected to 25
    Rib Hump-GONE!
    Age-60 at the time of surgery
    Now 66
    Avid Golfer & Tap Dancer
    Retired Kdgn. Teacher

    See photobucket link for:
    Video of my 1st Day of Golf Post-Op-3/02/12-Bradenton, FL
    Before and After Picture of back 1/7/11
    tap dancing picture at 10 mos. post op 11/11/11-I'm the one on the right.
    http://s1119.photobucket.com/albums/k630/pottoff2/

  13. #13
    Join Date
    Jun 2011
    Location
    Southern CA
    Posts
    2,262
    Glad that things are working out for you
    Melissa

    Fused from C2 - sacrum 7/2011

    December 8, 2014 - Another Broken Rod Surgery

  14. #14
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,595
    It looks like thing are falling into line for you! We are never "fully ready" for surgery, but you have done what you need to do and the rest will get done by someone else...or who really cares?

    Best of luck and stay positive! You will do it and will be suited at your strength!

    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 2 surgeries
    2014: Hernia @ ALIF repaired; Emergency screw removal Spinal Cord Injury 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
    2018: Removal L4,5 screw

  15. #15
    Join Date
    Aug 2013
    Location
    Sarasota, FL
    Posts
    9

    Ready

    We are flying today to St. Louis. This past wk (received call about a cancellation availability 4/23) has been a whirlwind of activity. I have a stress test today 2 hrs before we leave. Talk about stress!! Hope my anxiety isn't reflected in the test results. Testing tomorrow, central line Fri & surgery Monday. I'll try to post before Monday.
    Again I can't express how great this forum has been. At a "good luck" get together Monday someone commented about the depth of my knowledge regarding the procedure, post surgery, etc wondering how I knew so much information. Needless to say I credited the forum. Again a special thanks to "golfnut." What a great thing to be able to ask about the important things such as pedicure before surgery!!

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