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Thread: Flat Back: Revision Surgery

  1. #1
    Join Date
    Sep 2014
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    Pennsylvania
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    Flat Back: Revision Surgery

    [I am new to this forum and posted this inadvertently to the wrong subforum.]

    Flat Back Syndrome: Where Do I Go From Here?



    This is my first post. Actually, my cousin Lynn is writing it for me because I have extremely limited computer access.

    As you can see from my signature below, I've already had a number of surgeries for Scoliosis, most recently in 2007. Over the last couple years I've been sliding downhill and it is believed that my cage may now be unstable. I now have Flat Back Syndrome with Sagittal Imbalance, Kyphosis, Lordosis, and I'm losing significant height [3/4" in 5 months]. The pain and fatigue are constant. And to top it off, I just found out that I have osteopenia.

    I've been told that revision surgery might be of help to me. Then I've been told by another physician that it won't help me.

    I recently had appointments with several doctors to discuss my condition.

    Dr. O: [Neurosurgeon who does these surgeries all the time. Highly regarded.] Posterior surgery to repair would be sufficient. Requires a 5 hour myelogram pre-surgery. He believe he can help me.

    Dr. S: [Orth Surgeon] Says posterior and anterior approaches are needed; then said only posterior approach needed. He does not do revision surgery. [He put in my cage in 2007.]

    Dr. W: [Orth Surgeon] Says future surgery could leave me paralyzed and that it is a long and bloody surgery.


    I am sure to have more questions as time goes on, but I'd like to start off with these. My questions to the forum:

    1. Is there any reason why one should not have revision surgery when diagnosed with osteopenia?

    2. How effective is physical therapy in lieu of surgery in cases such as mine.

    Thanks so much to everyone who takes the time to respond.

    Lynn for Liz

    PS A note from cousin Lynn: Forgive me for not having specific name of the surgery Dr. O has suggested. This is all new to me and I'm trying to learn about these conditions.

    ~~~~~~~~~~~~~~~~~

    Idiopathic Scoliosis [Diagnosed in Adolescence]. Flat Back Syndrome; fused from T9 to Sacrum. Kyphosis.

    Surgeries:

    1982: Harrington Rod; fused T9 to sacrum.
    1985: Harrington rod removal [became loosened]
    1987: Simple repair to fuse area around iliac crest. Anterior and Posterior approach.
    2006: Stenosis. Laminectomy and Fusion with instrumentation [2 rods and 6 screws].
    2007: Anterior Lumbar Interbody Fusion; discectomy and metal interbody cage inserts [at site of broken fusion]

  2. #2
    Join Date
    Sep 2003
    Location
    Northern California
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    6,802
    Quote Originally Posted by CA-Lynn View Post
    [I am new to this forum and posted this inadvertently to the wrong subforum.]

    Flat Back Syndrome: Where Do I Go From Here?



    This is my first post. Actually, my cousin Lynn is writing it for me because I have extremely limited computer access.

    As you can see from my signature below, I've already had a number of surgeries for Scoliosis, most recently in 2007. Over the last couple years I've been sliding downhill and it is believed that my cage may now be unstable. I now have Flat Back Syndrome with Sagittal Imbalance, Kyphosis, Lordosis, and I'm losing significant height [3/4" in 5 months]. The pain and fatigue are constant. And to top it off, I just found out that I have osteopenia.

    I've been told that revision surgery might be of help to me. Then I've been told by another physician that it won't help me.

    I recently had appointments with several doctors to discuss my condition.

    Dr. O: [Neurosurgeon who does these surgeries all the time. Highly regarded.] Posterior surgery to repair would be sufficient. Requires a 5 hour myelogram pre-surgery. He believe he can help me.

    Dr. S: [Orth Surgeon] Says posterior and anterior approaches are needed; then said only posterior approach needed. He does not do revision surgery. [He put in my cage in 2007.]

    Dr. W: [Orth Surgeon] Says future surgery could leave me paralyzed and that it is a long and bloody surgery.


    I am sure to have more questions as time goes on, but I'd like to start off with these. My questions to the forum:

    1. Is there any reason why one should not have revision surgery when diagnosed with osteopenia?

    2. How effective is physical therapy in lieu of surgery in cases such as mine.

    Thanks so much to everyone who takes the time to respond.

    Lynn for Liz

    PS A note from cousin Lynn: Forgive me for not having specific name of the surgery Dr. O has suggested. This is all new to me and I'm trying to learn about these conditions.

    ~~~~~~~~~~~~~~~~~

    Idiopathic Scoliosis [Diagnosed in Adolescence]. Flat Back Syndrome; fused from T9 to Sacrum. Kyphosis.

    Surgeries:

    1982: Harrington Rod; fused T9 to sacrum.
    1985: Harrington rod removal [became loosened]
    1987: Simple repair to fuse area around iliac crest. Anterior and Posterior approach.
    2006: Stenosis. Laminectomy and Fusion with instrumentation [2 rods and 6 screws].
    2007: Anterior Lumbar Interbody Fusion; discectomy and metal interbody cage inserts [at site of broken fusion]
    Hi Liz...

    Your bone quality could definitely be a concern. If possible, a surgeon who does a lot of revision surgery on older patients, will be your best bet. Regardless of whether you have surgery or not, you should start working on building your bone density immediately.

    As far as I know, there are no studies that specifically compare physical therapy to spine revision surgery. If you're the sort of person who is likely to do PT exercises on a regular basis, I think it's ALWAYS a good idea to try that first. (A lot of people are not willing to do the work, so PT can be a waste of time.) I actually was able to avoid revision surgery for 8-10 years. I was fairly religious about doing my exercises on an almost daily basis, but had to stop suddenly when I started having muscle spasms in my rib cage. I should have gone back to my therapist to try to come up with some replacement exercises, but I had gotten fairly cocky about being able to avoid surgery, and didn't really understand how effective it had been for me until it was too late.

    Good luck with your journey.

    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 2008
    Location
    Oregon
    Posts
    1,162
    Hi,

    As Linda mentions you would be best seen by an experienced scoliosis revision surgeon. I see you are in Northern CA, would it be possible to be seen at UCSF? Linda works there and could fill you in on who you might do best seeing. If you let us know your area someone can help suggest experienced revision surgeons who can help you. I did notice in your post some negative comments from a surgeon who doesn't do revisions…I wouldn't put much if any stock in those comments since that surgeon is not qualified to help you. And the comments from Dr W tell me you need to keep looking for a qualified scoliosis specialist who does lots of revisions, as linda suggested.

    Good luck,
    Last edited by leahdragonfly; 09-23-2014 at 09:08 AM.
    Gayle, age 50
    Oct 2010 fusion T8-sacrum w/ pelvic fixation
    Feb 2012 lumbar revision for broken rods @ L2-3-4
    Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


    mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
    2010 VBS Dr Luhmann Shriners St Louis
    2017 curves stable/skeletely mature

    also mom of Torrey, 12 y/o son, 16* T, stable

  4. #4
    Join Date
    Sep 2014
    Location
    Pennsylvania
    Posts
    5
    Thanks so much for the comments.

    Actually, Liz is in the greater Pittsburgh, PA, area. Lynn [writing for Liz] is in Newport Beach, CA.

  5. #5
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,527
    Liz, welcome!

    My thoughts:

    Dr. O: ?????5 hour myelogram? I had a spinal tap, CT with myelogram with dye for my entire spine and it took about 1 hour. Unsure about the 5 hours????

    Dr. S: why did he say that she/he changed his mind on surgical approach? Having said that, count that surgeon out because he/she does not do revisions.

    Dr. W: leave you paralyzed.....why? What did he/she estimate was the chance that paralysis might occur? His/her comment about the surgery being "long and bloody"???????yours or his/her comment. If she/he actually said those exact words, while he/she is probably very accurate, the choice of words could have been much better, and it sounds like that doctor is trying to talk you out of it. With my first surgery, my spinal surgeon said based on my risk factors and planned surgery, that I had a 1 in 100 chance of dying, that I would need multiple units of blood (I needed 10) and the anterior surgery took 5 hours and the posterior surgery took 10 hours. In my recent revision surgery, the surgeon said that I had a 10 % chance of coming out of the surgery completely paralyzed. In both cases, I elected to have surgery because the benefit potentially outweighed the risk.

    Questions: how old are you? What is your T score and Z score on Bone Density testing? Osteopenia should be addressed immediately at the very least with adequate Vit D, Calcium, weight being exercise (problematic with your pain)....look up recommendations on the National Osteoporosis Foundation (NOF) For good information. Without spine issues and possible surgery, you might not require treatment, just monitoring but talk with your primary doctor and spinal surgeon for their professional decision in light of your personal history and risk factors.

    I highly suggest consulting an experienced SRS spinal surgeon that does frequent surgery on older adults who is associated with a University hospital.

    I wish you the best of luck in controlling your back problems and finding an acceptable quality of life. You have already been through so much....you are a survivor!

    Susan
    Last edited by susancook; 09-24-2014 at 01:11 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 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

  6. #6
    Join Date
    Jan 2008
    Location
    Oregon
    Posts
    1,162
    Linda,

    Can you recommend any revision surgeons near Pittsburg, PA?
    Gayle, age 50
    Oct 2010 fusion T8-sacrum w/ pelvic fixation
    Feb 2012 lumbar revision for broken rods @ L2-3-4
    Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


    mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
    2010 VBS Dr Luhmann Shriners St Louis
    2017 curves stable/skeletely mature

    also mom of Torrey, 12 y/o son, 16* T, stable

  7. #7
    Join Date
    Sep 2014
    Location
    Pennsylvania
    Posts
    5
    Would love recommendations in the Pittsburgh, PA, area.

    Liz doesn't know what Dr. S said to make him change his mind about the approach. She's already ruled him out because he really doesn't do revision surgery, as it turns out. Plus she found out that he doesn't even work at a hospital equipped for revision surgery.

    Dr. W: odds of paralysis - Liz didn't think to ask at the time. Good question.

    Right now Liz is leaning towards Dr. O at Univ Pittsburgh Med Center - IF she goes ahead with the surgery. He is a neurosurgeon. Liz would be interested in any other recommendations. She's a bit skeptical about the 5 hour myelogram though, so best that she asks him why such a long time. Another good question.

    http://www.upmc.com/services/neurosu...s/default.aspx

    Thanks so much for your help.

    Lynn [Writing for Liz]

  8. #8
    Join Date
    Sep 2003
    Location
    Northern California
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    6,802
    Quote Originally Posted by leahdragonfly View Post
    Linda,

    Can you recommend any revision surgeons near Pittsburg, PA?
    Unfortunately, I think all of the Pittsburg experts are peds specialists.
    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.

  9. #9
    Join Date
    May 2009
    Posts
    3,745
    a note....are they talking about 5 hours because they want
    you to lay flat afterwards to make sure you do not get a dreaded
    headache...?
    that is the one thing i can think of that would involve 5 hours...

    jess...and Sparky

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