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Thread: Should you have a revision surgery or not?

  1. #1
    Join Date
    Apr 2006
    Posts
    227

    Should you have a revision surgery or not?

    Just some thoughts re: my experience with revision and for those who are contemplating a revision surgery. I had a revision surgery done about a year and a half ago (by someone considered the top in his field). Going into the surgery, I knew there were risks and I was in such pain that I was willing to take them. Here are MY results (I know others experience more successes) - but I want people to really think (as I did) before going through with their revision.

    *loss of feeling from above my ribcage to below my thigh on one side
    *pain sleeping on my left side (I toss and turn all night to find a position that works)
    *difficulty sleeping
    *diffidulty walking long distances (without prodding myself on and reminding myself how to put one foot in front of the other)
    *inability to run (I was in track for 4 years so would continue to run now and again...not anymore)
    *continued pain in my lumbar region (hot pads required frequently)
    *new pain in my thoracic region between my shoulder blades
    *dread/fear of being touched on my left side...while it's numb...it still doesn't feel "right" when anyone touches it (including myself)
    *frequent visits to my primary physician (surgical physician has done what he can do)
    *difficulty carrying laundry up and down the stairs (thank goodness for home support from my family)
    *unable to sit on a simple foldable chair at football games (need more support)
    *inability to sit on hard chairs/benches for any length of time (ncluding bleachers)
    *inability to play basketball (I used to like to do this for fun with my kids)
    *overall exhaustion
    *newfound thyroid problem (which I understand is common with major surgeries?)

    A clarification: I saw 3 DIFFERENT surgeons and got 3 different opinions before surgery. I knew what I was up against. Most of these symptoms are new - I did NOT experience them (except the lumbar pain) since my first surgery in the 80s.

    Benefits: Mentally I always wondered if I could be more pain free and able to do more physical things in life...now I know the answer

    I will not look back and regret my decision - that doesn't help one heal. I do work (which I love) and help to take care of my family - I am grateful. I am TOTALLY wore out by the end of the day (moreso than I have ever experienced).

    Be sure YOU know the risks and how others surgery have gone before making your final decision. Be informed (as I tried to be with all my consultations and reading)! Be sure your family will be there for you no matter what (my hubby wishes to this day that I didn't have the revision but he knows what pain I lived in before - he is very caring! My kids are also very helpful and patient).

    In the end, do what is best for YOU with no regrets.
    Still Always Smilin'

    Always Smilin'
    Colleen

    1982 fused T2-L1
    pre op 45 - post op 33 (left thoracic)
    pre op 53 - post op 18 (right thoracic)

    recheck 2006
    right thoracic 57
    lower lumbar 34

    surgical revision April 28,2009
    revision T3-L1; new fusion L1-L4
    unsure of degrees at this point

  2. #2
    Join Date
    Aug 2008
    Location
    Indianapolis, IN
    Posts
    416

    Wink

    Colleen,
    I'm so sorry to hear that you have not gotten the result you were hoping for. Have you been to another surgeon for a second opinion since your revision? Your symptoms sound like I felt after my first surgery, the inability to walk any distance, or run, exhaustion, etc. I too have a spot on my back that is really sensitive to touch...feels almost like a Taser when my hubby touches it!
    You are right...we never know what our result will be. My first surgery had lousy results and I was very prepared and had researched very carefully. But my revision was extremely successful. The spine is such an intricate work of art... I think it takes a combination of surgical skill, lots of luck, time, and in my case a boatload of prayers to get where you need to be.
    I really hope you improve or are able to find someone to help.
    In any case, I will keep Always Smilin' too!
    May 2008 Fusion T4 - S1, Pre-op Curves T45, L70 (age 48). Unsuccessful surgery.

    March 18, 2010 (age 50). Revision with L3 Osteotomy, Replacement of hardware T11 - S1 , addition of bilateral pelvic fixation. Correction of sagittal imbalance and kyphosis.

    January 24, 2012 (age 52) Revision to repair pseudoarthrosis and 2 broken rods at L3/L4.

  3. #3
    Join Date
    Oct 2008
    Location
    Sunshine Coast, Queensland, Australia
    Posts
    3,261
    Hi Colleen,

    I have wondered how you were faring after what I knew to be a not-so-great outcome and had hoped you'd had some improvement by now.

    My first thought, like Kristy, is to wonder if you'd seen another surgeon. I'm thinking that there may be a surgeon who can help you. But would you be willing to try?

    I'm so sorry for all the pain you've been through and I do hope something comes along to give you the relief that you deserve.
    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

  4. #4
    Join Date
    Mar 2008
    Location
    Ottawa, Canada
    Posts
    101
    Hi Colleen,

    My heart goes out to you! I remember when you were going through the tough decision over whether or not to have the surgery or not. I'm so sorry to hear things are actually worse now. Thank you for your honesty - I don't know if revision is in my future, but I will keep your advice in my head in case it is.

    I'm glad to hear you're still able to work. I think you're a teacher (like me - I remember there were a few reasons I followed your story) and it would break my heart if I had to stop. You're a tough cookie to keep working despite all the new problems you've described, but I think I would do the same in your situation.

    Hoping maybe this will give you a little hope though: When I herniated a disc a few years ago, the nerves in my right leg and foot were so damaged that it took a good 2 years before the pain and most of the numbness went away. I did a lot of research on nerve damage while I was going through it, and learned that yes, it can take up to 2 years, for nerves to finally heal (or decide they're not going to). I don't think you're at the two year mark yet, and it sounds like you'd had some nerve problems before the fusion, so maybe there's still some improvement in your future? One thing that has really helped me is working with a very experienced spinal physiotherapist, who gave me exercises to loosen up and prevent more scar tissue from forming around the nerves. I actually even got back to playing low key non-competitive soccer for several months after it, before I became pregnant (which is why I'm not playing now).

    Anyway, none of that may be helpful in any way, but do know that your advice is appreciated and your strength is admired

    - Sarah
    - 39 years old
    - At age 14, curve progressed from 45 degrees to 62 degrees in two months.
    - Surgery in 1990 at the Children's Hospital of Eastern Ontario (CHEO) with Dr. Letts. Fused T5 to L2. Corrected to about 30 degrees.
    - Harrington rod
    - Herniated disc - L5/S1 - January 2008. Summer 2009 - close to making a full recovery.
    - New mommy as of February 2011
    - Second child - September 2013
    - Staying relatively painfree through physio exercises!

  5. #5
    Join Date
    Apr 2006
    Posts
    227
    Thanks Kristy, Sarah, and Jennifer,

    I truly don't mean to be a downer but sometimes the revisions don't work as planned. At this point, I really don't have the strength (emotionally, physically, or otherwise) to pursue another opinion. Maybe someday. Right now I am learning to cope and to live life again. It's a different life but I work to make the very best of it. I was in rough shape beforehand so I had to TRY to get better. I know the 3 surgeons and family physician I consulted with all concurred with the idea that I should try that revision. Maybe 2 years will be saving grace? I'm at 1 1/2 years now.

    Yes, I teach...and I love it. I love it even more now...I think because I felt I almost lost it. I love being active and being with kids. I love the learning environment and the excitement my little ones have over learning. There are days where it's a struggle to get out of bed but once I get moving I do pretty well and enjoy what I do.

    THere must be a positive in all of this - I'm hunting still

    I really do appreciate the support I've gotten from this board over the years. I don't make it on the board as often with work and homelife keeping me busy...but it is fun to reconnect.

    Take care all - and best of luck with all future decisions!
    Always Smilin'

    Always Smilin'
    Colleen

    1982 fused T2-L1
    pre op 45 - post op 33 (left thoracic)
    pre op 53 - post op 18 (right thoracic)

    recheck 2006
    right thoracic 57
    lower lumbar 34

    surgical revision April 28,2009
    revision T3-L1; new fusion L1-L4
    unsure of degrees at this point

  6. #6
    Join Date
    Jan 2006
    Location
    near Philadelphia
    Posts
    1,260
    Hi Colleen,

    I'm sorry about your poor revision results.

    One small thing: do you use a pillow on hard and/or folding chairs? Comforthouse.com makes wonderful inflatable pillows that you can fold up and stash in your purse. They make a huge difference for me.
    Chris
    A/P fusion on June 19, 2007 at age 52; T10-L5
    Pre-op thoracolumbar curve: 70 degrees
    Post-op curve: 12 degrees
    Dr. Boachie-adjei, HSS, New York

  7. #7
    Join Date
    May 2009
    Posts
    3,745
    wow, Colleen...i give you a huge amount of credit! i taught special ed for years, before leaving the classroom to do testing, then social work, though still within the NYC public schools...and most of them are very tough!!
    teaching is rough no matter the age of kids, subject matter, or location of the school...it takes tremendous energy to do it right!
    i loved the full time job in the schools, & part time in drug rehab...& as a side benefit, they both distracted me from my pain...but when i took a break, the pain would come flooding in!

    i hope you pat yourself on the back for continuing to work.....it is a huge accomplishment to be proud of!! that, and your family to care for, is amazing!

    jess

  8. #8
    Join Date
    Sep 2003
    Location
    NJ
    Posts
    1,291

    Revision

    Not sure all your problems are due to revision being "unsuccessful". I found I needed Rolfing(aka Sructural Integration) with Dr. Boachie's approval. This helped loosen scar tissue which can be quite uncomfortable. I needed/need to keep active(I am 68) by walking and Pilates. Otherwise one becomes tightened up because so many muscles are cut it takesa long time to heal.
    It was a good year and half before I felt like myself and I was 60.

    Regarding running/jogging. This jolts the hardware. Dr. Boachie said it was not recommended so do strenuous hiking and walking.

    I did not have any thyroid issues after my surgery. Make sure you do not have any underlying medical condition that would account of lack of energy including a possible biochemical depression. Are you getting enough rest at least?

    Odd pains are common with this surgery during the first couple of years and numbness in many areas is perfectly normal because of the long incisions.
    Original scoliosis surgery 1956 T-4 to L-2 ~100 degree thoracic (triple)curves at age 14. NO hardware-lost correction.
    Anterior/posterior revision T-4 to Sacrum in 2002, age 60, by Dr. Boachie-Adjei @Hospital for Special Surgery, NY = 50% correction

  9. #9
    Join Date
    May 2010
    Posts
    345
    Quote Originally Posted by naptown78 View Post
    Colleen,
    I'm so sorry to hear that you have not gotten the result you were hoping for. Have you been to another surgeon for a second opinion since your revision? Your symptoms sound like I felt after my first surgery, the inability to walk any distance, or run, exhaustion, etc. I too have a spot on my back that is really sensitive to touch...feels almost like a Taser when my hubby touches it!
    You are right...we never know what our result will be. My first surgery had lousy results and I was very prepared and had researched very carefully. But my revision was extremely successful. The spine is such an intricate work of art... I think it takes a combination of surgical skill, lots of luck, time, and in my case a boatload of prayers to get where you need to be.
    I really hope you improve or are able to find someone to help.
    In any case, I will keep Always Smilin' too!
    Naptown78-Hi- just want you to know I had the revision surgery Oct.20th. You can read about it on the other thread" first time after 18 surgeries". I will post it here too. babyboomer16

  10. #10
    Join Date
    Sep 2003
    Location
    NJ
    Posts
    1,291

    Lightbulb Myofascial release is a recognized therapeutic modality

    ...

    from what i have read, it is considered that there is no proof rolfing is therapeutic (see wikipedia and other references)...i would think it would take a lot for a surgeon to recommend such tx...especially post op!!
    jess[/COLOR][/QUOTE]Jess

    I discussed myofascial release with Dr. Boachie who I consider to be more knowlegeable than Wikipedia. Anyone can post there.

    After Rolfing, which is really deep massage and kneading of soft tissue, my scars felt less tight.

    Myofascial release is a recognized modality and is done medically with physical therapy and sometimes surgically. I have had physical therapy much like Rolfing.

    I can only say it helps so many of my scarred areas. I have had 4 (2 0f those 4 at age 14) spine operations, gallbladder, hysterectomy and bilateral mastectomies with reconstruction. You would figure I would have plenty of scars. I only have treatments once or twice a year but I have had 8 surgeries in the last 8 years.
    Original scoliosis surgery 1956 T-4 to L-2 ~100 degree thoracic (triple)curves at age 14. NO hardware-lost correction.
    Anterior/posterior revision T-4 to Sacrum in 2002, age 60, by Dr. Boachie-Adjei @Hospital for Special Surgery, NY = 50% correction

  11. #11
    Join Date
    May 2010
    Location
    NJ
    Posts
    70

    revision surgery

    Quote Originally Posted by always smilin' View Post
    Just some thoughts re: my experience with revision and for those who are contemplating a revision surgery. I had a revision surgery done about a year and a half ago (by someone considered the top in his field). Going into the surgery, I knew there were risks and I was in such pain that I was willing to take them. Here are MY results (I know others experience more successes) - but I want people to really think (as I did) before going through with their revision.

    *loss of feeling from above my ribcage to below my thigh on one side
    *pain sleeping on my left side (I toss and turn all night to find a position that works)
    *difficulty sleeping
    *diffidulty walking long distances (without prodding myself on and reminding myself how to put one foot in front of the other)
    *inability to run (I was in track for 4 years so would continue to run now and again...not anymore)
    *continued pain in my lumbar region (hot pads required frequently)
    *new pain in my thoracic region between my shoulder blades
    *dread/fear of being touched on my left side...while it's numb...it still doesn't feel "right" when anyone touches it (including myself)
    *frequent visits to my primary physician (surgical physician has done what he can do)
    *difficulty carrying laundry up and down the stairs (thank goodness for home support from my family)
    *unable to sit on a simple foldable chair at football games (need more support)
    *inability to sit on hard chairs/benches for any length of time (ncluding bleachers)
    *inability to play basketball (I used to like to do this for fun with my kids)
    *overall exhaustion
    *newfound thyroid problem (which I understand is common with major surgeries?)

    A clarification: I saw 3 DIFFERENT surgeons and got 3 different opinions before surgery. I knew what I was up against. Most of these symptoms are new - I did NOT experience them (except the lumbar pain) since my first surgery in the 80s.

    Benefits: Mentally I always wondered if I could be more pain free and able to do more physical things in life...now I know the answer

    I will not look back and regret my decision - that doesn't help one heal. I do work (which I love) and help to take care of my family - I am grateful. I am TOTALLY wore out by the end of the day (moreso than I have ever experienced).

    Be sure YOU know the risks and how others surgery have gone before making your final decision. Be informed (as I tried to be with all my consultations and reading)! Be sure your family will be there for you no matter what (my hubby wishes to this day that I didn't have the revision but he knows what pain I lived in before - he is very caring! My kids are also very helpful and patient).

    In the end, do what is best for YOU with no regrets.
    Still Always Smilin'
    Hi, Always Smilin, I am seeing a Dr. at Johns Hopkins about revision surgery, My first went great, but I am doing a lot of thinking about revision, I would like to know where and by whom you had your revision done. thanks for the info. LU

  12. #12
    Join Date
    May 2009
    Posts
    3,745
    hi Karen
    i am very glad for you that rolfing helped you...

    i tried it a few years ago (didn't make it near to ten sessions)...then researched it afterwards (on more than just internet...and read research reports available to lay public, including from Harvard Medical School)).... also discussed it with the doctors i had at the time...rolfing did not help me...or rather, i felt the pain would kill me before it helped me...
    i haven't had surgery.... yet...so i can't possibly know what that would be like...i only know what rolfing was like for me, sans (or maybe pre) surgery...
    i do know my rheumatologist told me that rolfing wouldn't be good for an inflammatory condition like arthritis, so maybe that has something to do with it...

    i am happy for anyone who gets relief from any method possible, to get out from under the pain related to scoli & what it can do to the body

    i hope you continue to feel well...

    jess
    Last edited by jrnyc; 11-10-2010 at 02:47 AM.

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