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  1. #1
    Join Date
    Aug 2010
    Posts
    42

    What a mess!

    Ok here I am AGAIN!
    I had original surgery in 2005 fused from t-4to l-4. and rods implanted. Pain was 10x worse since my surgeries. Went thru pain meds, stimulator and then the pump, none helped.
    Finally went to see a surgeon on the west coast of fl. who said pain was possibly caused from area in the lower back that was not fused. So after some investigation and alot of questions we had him do a second operation where i was fused rest of the way down to s-1 and had the pelvic anchors put in.
    Well that again didn't do the trick. So I went to another pain managment doctor who said they took the pump out before they should have and "he can make it work if I do it again". Guess what i have the pump in again and still no relief. We have tried numerous drugs in the pump and have even started to mix them in order to see if anything will work.
    Well in this time frame my wife and I started to notice some noise coming from my back when i layed down (the only position that gives me some relief) and made an appt. with my local ortho surgeon to get some pics. This doc is great but told me from the first time i saw him over 4 yrs. ago that he would not do any surgery's on my back. He felt the risk way outweighed the rewards.
    I just got back from his office where i was informed that i have to broken areas in my rods of the left side and one on the right with a posible fracture starting on that side also. When asked what i should do he stated that he doesn't know!
    I am in so much pain now and loosing all hope. I now am fused from T-4 to sacrum with the pelvic anchors in, and yeah can't forget the pump.
    Loosing all hope, don't know where or who to turn to. Getting depressed and bad ideas in my head. Thank God for my wife and children who up to this point have kept me going. I am only 43 yrs. old and being told that I need to go on disibility and "they will try to keep me comfortable". What kind of life is that!?
    Any and all help will be appreciated, anyone out there been here?

  2. #2
    Join Date
    May 2009
    Posts
    3,745
    steve, please read the revision section of forum...
    there are patients who had broken rods and had them
    replaced...
    i think by now you need a top surgeon who knows revision...
    that might mean traveling...
    but you cannot afford to stay with surgeons who do not
    know what they are doing..
    how on earth can a surgeon tell you he doesn't know what
    you should do???
    i am sure broken rods must be replaced...period!
    i am so sorry for all your pain...

    jess
    Last edited by jrnyc; 02-05-2013 at 05:03 PM.

  3. #3
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,527
    Steve, get yourself to a very good scoliosis revision doctor. Ask Linda Racine who is close to your location. You should not be in such pain. Get those crazy thoughts out of your head and see a doctor that can help you. You have lots of support on this forum. Please write back and let us know how you are doing.
    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
    Join Date
    Oct 2008
    Location
    Sunshine Coast, Queensland, Australia
    Posts
    3,261
    I can't believe they didn't check for breaks from the start. I know they aren't always visible, but yours obviously were!

    I'm no expert but treating the pain without first fully investigating the cause is not right.

    I don't blame you for feeling like giving up after all you've been through, but don't, because an experienced scolli revision surgeon (many names on this forum) can give you back your life.

    Please keep in touch and let us know how you go. Wishing you the very best.
    Surgery March 3, 2009 at almost 58, now 63.
    Dr. Askin, Brisbane, Australia
    T4-Pelvis, Posterior only
    Osteotomies and Laminectomies
    Was 68 degrees, now 22 and pain free

  5. #5
    Join Date
    Apr 2010
    Location
    Waterloo, IL
    Posts
    1,691
    Don't even think about giving up. There are surgeon who are experienced in revision surgery who get excellent outcomes for those who have had broken rods. I hope Linda Racine can give you names of the best surgeons in your area. I am sorry you have had such a rough time with your surgeries.
    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/

  6. #6
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    3,555
    Wow Steve! You have had a run of bad luck for sure....so sorry about all of this.

    You have broken your rod or rods so it means you have a non-union and you didnít fuse. I donít think we have ever heard any doctor mention doing nothing in that situation and usually or always these things have to be fixed and fixed by someone who does extensive revision surgeries. You owe it to yourself your wife and kids to seek the right surgeon which could mean travelling.....

    There is a surgeon out 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

  7. #7
    Join Date
    Aug 2010
    Posts
    42

    Feeling little better

    Thanks to you all.
    Feeling a little better mentally today but not physically.
    Gonna slow down and try to find another Doc. who can do something hopefully. A few of you mentioned a Susan who can give me a list of Docs? How do I get in touch with her?
    Still don't know what is to come but I am feeling like the walls of my box are getting closer and closer. Emotionally I am shot! Just tired of hurting period. Want a Doc to say "I can help you". And not " I don't know what to do". Is that asking to much? Starting to get angry with God and he has been a big part of me still being here. Asking "why me God, scoliosis sucks"! Would do anything to be able to pick up and/or carry my 4 yr. old.
    I can feel this break on my right side. It feels like a knife is trying to poke out of my skin! The rest of the pain well its just normal for me.
    Ok getting out of my pitty pot. I have got to find someone with answers and fast because this stuff hurts.
    Anyone know someone close to the State of FL.?

  8. #8
    Join Date
    Jan 2013
    Location
    Willington, CT
    Posts
    10

    Don't lose hope!

    Quote Originally Posted by scuba steve View Post
    Ok here I am AGAIN!
    I had original surgery in 2005 fused from t-4to l-4. and rods implanted. Pain was 10x worse since my surgeries. Went thru pain meds, stimulator and then the pump, none helped.
    Finally went to see a surgeon on the west coast of fl. who said pain was possibly caused from area in the lower back that was not fused. So after some investigation and alot of questions we had him do a second operation where i was fused rest of the way down to s-1 and had the pelvic anchors put in.
    Well that again didn't do the trick. So I went to another pain managment doctor who said they took the pump out before they should have and "he can make it work if I do it again". Guess what i have the pump in again and still no relief. We have tried numerous drugs in the pump and have even started to mix them in order to see if anything will work.
    Well in this time frame my wife and I started to notice some noise coming from my back when i layed down (the only position that gives me some relief) and made an appt. with my local ortho surgeon to get some pics. This doc is great but told me from the first time i saw him over 4 yrs. ago that he would not do any surgery's on my back. He felt the risk way outweighed the rewards.
    I just got back from his office where i was informed that i have to broken areas in my rods of the left side and one on the right with a posible fracture starting on that side also. When asked what i should do he stated that he doesn't know!
    I am in so much pain now and loosing all hope. I now am fused from T-4 to sacrum with the pelvic anchors in, and yeah can't forget the pump.
    Loosing all hope, don't know where or who to turn to. Getting depressed and bad ideas in my head. Thank God for my wife and children who up to this point have kept me going. I am only 43 yrs. old and being told that I need to go on disibility and "they will try to keep me comfortable". What kind of life is that!?
    Any and all help will be appreciated, anyone out there been here?



    My rods broke about a year and a half after my fusion surgery. The doctor wanted me to wait as long as possible before going in again, to allow the bone to fuse. The rods themselves are just scaffolding to hold the spine in place until the bone fuses. You don't really need them once the fusion is solid. When I had my next surgery, the doctor didn't have to put new rods back in! Since your fusion surgery was so long ago, there's a very good chance you would be able to simply take the rods out. And given your age, it's also very likely that the back is stable now and will not move, meaning you could be rod-free! I was rod free for 5 wonderful years! Unfortunately, for me, my back moved again, requiring a re-fusion. But my situation was different from yours because I was also at an age when I was more at risk for the scoliosis to continue. My second fusion has been very successful.

    Please don't give up. Not only am I a scoliosis patient, but I am also a mind/body therapist (and former personal trainer) helping clients deal with chronic pain, disability and stress. There are many things you can do to help deal with your pain and get your body more comfortable -- water therapy, meditation, Reiki, reflexology, massage. . .all these things work.

    But first, you need to find a surgeon who understands scoliosis. If your doctor doesn't know what to do at this point, then run from him, fast! Not sure where you're located, but you may want to find a teaching hospital. They are usually forward-thinking. But it sounds like a clear case of removing the rods. And then you can begin the process of regaining strength, mobility and peace.

  9. #9
    Join Date
    Aug 2010
    Posts
    42
    Thank you very much for positive feedback. I have to admit that I am trying to NOT get excited about the option of hardware removal but I am.
    I think that would end this entire nightmare but I have been told that some docs do not like to take the risk of removal.
    I will be leaving in moring for my trip to N.C. And ask that all please pray for me and Dr. Hey.
    Will advise on what is decided when I return on Wed.
    Thank you all once again, u helped pull me through a few weeks when I didn't know if I could take anymore of this.

  10. #10
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,903
    Good luck Steve. If you read Dr. hey's blog, you will see he is very much like you. I hope this helps you through.
    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."

  11. #11
    Join Date
    Jun 2011
    Location
    Southern CA
    Posts
    2,224
    Hope all goes well
    Melissa

    Fused from C2 - sacrum 7/2011

    December 8, 2014 - Another Broken Rod Surgery

  12. #12
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,527
    I can't wait to hear how your appointment goes! You are on your way to getting fixed and living the rest of your life! You are in the right place.
    Good luck and smile. The new you is in process!
    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

  13. #13
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,527
    Quote Originally Posted by scuba steve View Post
    Thank you very much for positive feedback. I have to admit that I am trying to NOT get excited about the option of hardware removal but I am.
    I think that would end this entire nightmare but I have been told that some docs do not like to take the risk of removal.
    I will be leaving in moring for my trip to N.C. And ask that all please pray for me and Dr. Hey.
    Will advise on what is decided when I return on Wed.
    Thank you all once again, u helped pull me through a few weeks when I didn't know if I could take anymore of this.
    Dr. Hey will carry some of your burden. Relax and trust him. You are in awesome hands. If in his professional opinion, he needs to remove hardware, so be it!

    You have a great cheering section here. And Dr. Hey will pray for you too, he is that kind of guy.

    Praying for you, 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

  14. #14
    Join Date
    Oct 2008
    Location
    Sunshine Coast, Queensland, Australia
    Posts
    3,261
    Looking forward to hearing how your appt. goes!
    Surgery March 3, 2009 at almost 58, now 63.
    Dr. Askin, Brisbane, Australia
    T4-Pelvis, Posterior only
    Osteotomies and Laminectomies
    Was 68 degrees, now 22 and pain free

  15. #15
    Join Date
    Aug 2010
    Posts
    42
    Bags packed. All ready to go.
    Gonna kiss wife and kids in morning and head to Orlando to catch that plane.
    Thanks to ALL again.
    And PLEASE say a prayer for me on Tues. Morning. Will let you know how it goes as soon as I return on Wed.
    Steven

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