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  1. #1
    Join Date
    May 2009
    Location
    Topeka, KS
    Posts
    424

    Surgery 2 years ago

    Good afternoon. My first post so bear with me. Iíve had surgery 2 years ago from top of neck to end of spine rods and screws. Surgery 2 years ago was to take broken rods out and put in all new. What an ordeal! Again! Over the past few months Iíve been in excruciating pain! I canít stand but only for a few minutes. I have excruciating pain in one shoulder blade, down low and mid back. Sometimes to the point of tears because I fear itís the rods broken again. Again? I donít know if I can go thru this surgery again! I cannot bear that thought!!! My reg dr gave me hydrocodone and muscle relaxer until I see my surgeon in March. Iíve gone down the pity road many times! Why me! Anyone have their rods break more than once?
    Rita Thompson
    Age 46
    Milwaukee Brace wearer for 3 years in childhood
    Surgery Mar 1st - 95 degree thoracic curve
    Surgery by Dr. Lenke, St. Louis, MO
    Post-surgery curve 25-30 degree

  2. #2
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    4,024
    Rita

    I'm in shock.....why didn't you post? its been around 7 years....

    I remember your huge curve, Dr Lenke did your initial surgery, and you were good a year after. What did he say 2 years ago when your rods broke?

    Your the 2nd one here lately that broke rods many years (7) after initial fusion.

    I am so sorry about all of this....

    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

  3. #3
    Join Date
    May 2008
    Location
    reno,nevada
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    4,024
    Quote Originally Posted by RitaR View Post
    Anyone have their rods break more than once?
    FLT, Fierce like Tiger broke her rods twice at age 25. She wasn't fusing. She finally went to Twin Cities Scoliosis Center since she lived in Iowa and they fixed her up. I remember specifically since she mentioned that her surgeon told her that you just don't slap BMP on and expect it to work. BMP is only "on label" or FDA approved for ALIF otherwise, its off label for scoliosis surgery. I had a BMP ALIF procedure so I remember these things.

    Again, a lot of years has passed since she was done. I hope she is ok.

    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

  4. #4
    Join Date
    May 2009
    Location
    Topeka, KS
    Posts
    424

    Surgery two ago

    hours for sx. He said he was very scared by the amount of blood I lost. I spent 3 days in icu after sx. Recovery went very slow. I always had a lot of pain it seemed. Then a few months ago I started having horrible pain. Itís been ever increasing ever since to the point of tears at times. I called St. Louis and they gave me arch appt time. Iím not sure I can make it that long. Pain is horrible!
    Rita Thompson
    Age 46
    Milwaukee Brace wearer for 3 years in childhood
    Surgery Mar 1st - 95 degree thoracic curve
    Surgery by Dr. Lenke, St. Louis, MO
    Post-surgery curve 25-30 degree

  5. #5
    Join Date
    May 2008
    Location
    reno,nevada
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    4,024
    Rita,

    If it gets out of control, go to the hospital. I suppose they will knock you out with an injectable for a pain break.

    Can you arrange to see a pain specialist next week? Have you tried a Fentanyl Patch?

    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
    May 2009
    Location
    Topeka, KS
    Posts
    424
    Iíve tried otc patches but not Fentanyl. Iím going to call Dr Lenke tomorrow and see if he will see me. I really liked him. I just canít imagine having sx in NY, ie how to get home. But, worry about that then I guess. I have to do something!
    Rita Thompson
    Age 46
    Milwaukee Brace wearer for 3 years in childhood
    Surgery Mar 1st - 95 degree thoracic curve
    Surgery by Dr. Lenke, St. Louis, MO
    Post-surgery curve 25-30 degree

  7. #7
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    4,024
    Fentanyl is powerful stuff.....That's why they put it in a patch.

    Why didn't you let Dr Lenke know 2 years ago before your rods were removed? Was it because he moved to New York?

    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

  8. #8
    Join Date
    Jan 2019
    Posts
    18

    Surgery 16 mths ago.

    Quote Originally Posted by RitaR View Post
    Good afternoon. My first post so bear with me. Iíve had surgery 2 years ago from top of neck to end of spine rods and screws. Surgery 2 years ago was to take broken rods out and put in all new. What an ordeal! Again! Over the past few months Iíve been in excruciating pain! I canít stand but only for a few minutes. I have excruciating pain in one shoulder blade, down low and mid back. Sometimes to the point of tears because I fear itís the rods broken again. Again? I donít know if I can go thru this surgery again! I cannot bear that thought!!! My reg dr gave me hydrocodone and muscle relaxer until I see my surgeon in March. Iíve gone down the pity road many times! Why me! Anyone have their rods break more than once?
    Hi,

    I too had surgery with Dr. Lenke, 16 maths ago.- Oct 2017. I am also in relentless pain and think my pain is coming from the hardware. I am considering having all of my hardware removed. Is this something you have ever considered? All of my test show that nothing is wrong but I do not want to live with this type of pain.

    Lisa

  9. #9
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    4,024
    Real simple Lisa

    Go to main page, select Forum (Up at the top)

    Click on Surgical (revision) Adult patients 18+

    Click on Post new Thread

    ================================================== =====================================

    Rita had all her hardware removed and you can see how she is doing. There are not many "full" hardware removal testimonials since I have been reading here over 14 years. Partial rod sections and screws, yes, full, no.

    If I were in your position, I would go to Hospital for Special Surgery and see what they say. (Dr Schwab) I would get a 2nd opinion at a main scoliosis center.
    https://www.hss.edu/

    HSS has a orthopedic excellence record that goes back to the Civil War. Possibly the best in Orthopedics in the world.

    There is also Dr Errico and Dr Lonner....Both are highly respected scoliosis surgeons.

    I would be extremely hesitant removing "All" my hardware unless there is a rejection or infection. If they can rule out the specific area by doing shots, then proceed by removing a screw if that's the problem. I would want to try to find the problem area and put a LOT of effort into it. You can also have a non-scoliosis related pain coming from somewhere else that has not been discovered yet.

    Here is a study on progression after hardware removal (Age 10-21) Please realize the age on this one.
    Loss of correction was 23 degrees. Larger loss with infection.
    https://www.researchgate.net/publica..._Spinal_Fusion

    Only 40% reported relief.

    How old are you and where are you located?

    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

  10. #10
    Join Date
    May 2009
    Location
    Topeka, KS
    Posts
    424

    From RitaR

    Hi there. So..im still in dying pain. Tears sometimes and i have a high pain tolerance. Went to NY saw Dr Lenke and he said to us in person he could see why im in so much pain. Said he would take care of me. Then 2 weeks later his nurse calls and said Dr Lenke didnt have anything to offer me and that was that! I was shocked! Here we haf own all the way up therw..got the bone scan and ct scan he wanted then he says he has nothing for me. WHAT? and his nurse couldnt get off the phone fast enough. What am i suppsed to do, i asked her. She said, thats all he saud, ok? Ummmm...no! Cannot believe this circus!
    Rita Thompson
    Age 46
    Milwaukee Brace wearer for 3 years in childhood
    Surgery Mar 1st - 95 degree thoracic curve
    Surgery by Dr. Lenke, St. Louis, MO
    Post-surgery curve 25-30 degree

  11. #11
    Join Date
    May 2009
    Location
    Topeka, KS
    Posts
    424
    Ed, where are the drs you mention above? I cannot do anything or im in horrible pain. At times, i can barely walk at work. Then, i wind bbn up going home to bed. Im nearly to end of my rope!

    Thanks.
    Rita Thompson
    Age 46
    Milwaukee Brace wearer for 3 years in childhood
    Surgery Mar 1st - 95 degree thoracic curve
    Surgery by Dr. Lenke, St. Louis, MO
    Post-surgery curve 25-30 degree

  12. #12
    Join Date
    May 2009
    Location
    Topeka, KS
    Posts
    424
    Ed, where are the drs you mention above? I cannot do anything or im in horrible pain. At times, i can barely walk at work. Then, i wind up going home to bed. Im nearly to end of my rope!

    Thanks.
    Rita Thompson
    Age 46
    Milwaukee Brace wearer for 3 years in childhood
    Surgery Mar 1st - 95 degree thoracic curve
    Surgery by Dr. Lenke, St. Louis, MO
    Post-surgery curve 25-30 degree

  13. #13
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    4,024
    Rita

    I sent you a Private mail

    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

  14. #14
    Join Date
    Jan 2019
    Posts
    18

    Dr. Lenke

    Quote Originally Posted by titaniumed View Post
    Real simple Lisa

    Go to main page, select Forum (Up at the top)

    Click on Surgical (revision) Adult patients 18+

    Click on Post new Thread

    ================================================== =====================================

    Rita had all her hardware removed and you can see how she is doing. There are not many "full" hardware removal testimonials since I have been reading here over 14 years. Partial rod sections and screws, yes, full, no.

    If I were in your position, I would go to Hospital for Special Surgery and see what they say. (Dr Schwab) I would get a 2nd opinion at a main scoliosis center.
    https://www.hss.edu/

    HSS has a orthopedic excellence record that goes back to the Civil War. Possibly the best in Orthopedics in the world.

    There is also Dr Errico and Dr Lonner....Both are highly respected scoliosis surgeons.

    I would be extremely hesitant removing "All" my hardware unless there is a rejection or infection. If they can rule out the specific area by doing shots, then proceed by removing a screw if that's the problem. I would want to try to find the problem area and put a LOT of effort into it. You can also have a non-scoliosis related pain coming from somewhere else that has not been discovered yet.

    Here is a study on progression after hardware removal (Age 10-21) Please realize the age on this one.
    Loss of correction was 23 degrees. Larger loss with infection.
    https://www.researchgate.net/publica..._Spinal_Fusion

    Only 40% reported relief.

    How old are you and where are you located?

    Ed
    Rita, I also sent you a private PM. Please call me, I would love to speak with you concerning your pain. I have done a lot of research and work trying to figure out what to do next. I would love to share with you what I have learned.

    Lisa

  15. #15
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,577
    Rita,

    So sorry about all of your pain. I may not have read all of the postings above, so forgive me if I suggest something that you have already said.

    I suggest that you call Dr. Lenke's office back, talk to his nurse and tell her that what she told you was in direct contradiction to what Dr. Lenke told you. You need to know why he will not do anything. You need to hear it from him. The next spine surgeon that you go to will ask why Dr. Lenke won't help you.

    Request a copy of his notes for the visit immediately so you know why he cannot do anything for you.

    Do you have copies of all of the imaging that he did?

    I have broken numerous rods and screws and have had them replaced.

    Keep us posted. Take some deep breaths....if you can.... and advocate for yourself.

    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

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