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Thread: decisions, decisions and different opinions

  1. #16
    Join Date
    Feb 2007
    Posts
    254
    I am fused down to L4 and had a great deal of pain prior to surgery. But at 3 years post op, I am pain free for the most part. Sometimes I have a bad day but am so thankful I had this surgery. My Dr. also told me there was a chance that the fusion would put more stress on the remaining discs, but we will deal with that when the time comes if it comes.
    Patty 51 years old
    Surgery May 23, 2007(43 Birthday)
    Posterior T3- L4
    Pre surgery curves
    T-53degrees
    L-38degrees
    and a severe side shift to the right.
    Post surgery curves
    Less than 10 degrees
    Surgery April, 2006
    C4 - C6

  2. #17
    Join Date
    May 2009
    Posts
    3,745
    Evelyn
    "you may be in worse pain after the surgery"...?!!!!

    i would be REALLY careful going ahead with any surgery with a warning like that from the very people who would do the surgery!!! seriously..what then is their selling point..? you'll stop progression of the curve(s) but be in agony?

    i have severe lumbar pain...i would never ever opt for this pain by choosing surgery!! i was hoping to opt out of it with surgery!

    jess

  3. #18
    Join Date
    Mar 2008
    Location
    New Bern, NC
    Posts
    1,445
    [QUOTE=Confusedmom; Seems like lumbar curves have fewer severe consequences??? [/QUOTE]

    Severe lumbar curves can land you in a wheel chair.
    Sally
    Diagnosed with severe lumbar scoliosis at age 65.
    Posterior Fusion L2-S1 on 12/4/2007. age 67
    Anterior Fusion L3-L4,L4-L5,L5-S1 on 12/19/2007
    Additional bone removed to decompress right side of L3-L4 & L4-L5 on 4/19/2010
    New England Baptist Hospital, Boston, MA
    Dr. Frank F. Rands735.photobucket.com/albums/ww360/butterflyfive/

    "In God We Trust" Happy moments, praise God. Difficult moments, seek God. Quiet moments, worship God. Painful moments, trust God. Every moment, thank God.

  4. #19
    Join Date
    Feb 2010
    Posts
    460
    Hi Evelyn, my main curve was lumbar at 85 degrees at age 44. I had minimal pain prior to surgery, however, I couldn't stand for more than ten minutes without feeling a lot of pain, so it was starting to affect me taking care of my boys and doing day trips with them. My curve was progressing quite rapidly in the last year, and I was told that my stomach organs had shifted, and would likely continue to shift upwards causing constriction to my heart and lungs, also my pain would definitely worsen, and if I had the operation now rather than later, I would have a much better chance of a good correction, and the surgery would be a lot easier on me now rather than when I'm older. I am really happy that I chose to have this surgery now, obviously I'm not pain-free yet as I'm only seven weeks post op, but my body looks great for the first time in many years, before I looked so ugly and deformed. Also I don't have to worry about my heart and lungs anymore, or think about facing this surgery anymore, as it's now in the past. I was lucky to get a great correction, lumbar went from 85 to 27, and thoracic went from 55 to 19, so I'm very happy with my results, and thrilled that I researched my doctors, and I feel like I got the best doctor in the universe
    Lynette - 44 years old.

    Pre-surgery thoracic 55 degrees
    Pre-surgery lumbar 85 degrees

    Post-surgery thoracic 19 degrees
    Post-surgery lumbar 27 degrees

    Surgery April 1st 2010.

    Posterior spinal fusion from T9 to sacrum.
    Dr. Cronen at University Community Hospital - Tampa, FL.

  5. #20
    Join Date
    Oct 2009
    Location
    PA
    Posts
    798
    That's just fabulous, Lynette - the correction, your joy in your doctor, your decision - everything.

    I hope everything continues to fall into place for you. I've been worried about your leg pain as well as your activity level so soon after surgery, your relative youth notwithstanding (bed-making? )

    What concerns me most is having just learned on another thread how important it is to avoid bending, twisting etc, for the first three months (to insure fusion and avoid pseudoarthrosis -if, remarkably, I've spelled that right! ).

    But OTOH, your lower fusion leaves you much more mobility than mine will (and that of others).

    Way to go, all!!
    Not all diagnosed (still having tests and consults) but so far:
    Ehler-Danlos (hyper-mobility) syndrome, 69 - somehow,
    main curve L Cobb 60, compensating T curve ~ 30
    Flat back, marked lumbar kyphosis (grade?) Spondilolisthesis - everyone gives this a different grade too. Cervical stenosis op'd 3-07, minimally invasive

  6. #21
    Join Date
    Oct 2008
    Location
    Sunshine Coast, Queensland, Australia
    Posts
    3,261
    Quote Originally Posted by LindaRacine View Post
    Hi...

    I've found a huge span between conservative and radical surgeons. I personally have a lot more respect for conservative surgeons, and would personally choose to wait. I've said many times that adult patients with little or no pain going into surgery seem to have the worst outcomes.

    Were you told that severe lumbar curves can cause kidney and gastrointestinal issues? I'm not aware of any such research, and would be interested to know if there is any.

    Regards,
    Linda
    My surgeon told me the exact opposite. His words were, "Those with little or no pain prior to surgery, tend to have the best results." My pain was low to moderate and I'm now painfree.

    I would think that waiting would only give the pain a chance to worsen? It was certainly worsening for me.
    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

  7. #22
    Join Date
    Oct 2005
    Location
    Chicago north suburb
    Posts
    774
    Thatís my understanding as well, Jennifer. In fact, there were a couple of posters here who repeated the same observation from their surgeons, one of whom was Dr. Boachie. The pain I experienced before my surgery was structural in nature. I was beginning to feel the effects of a collapsing spine, but it did not disable me to the point where I had to quit my job and start a regimen of taking daily pain medication. Now that my spine has been straightened and stabilized, I have no pain at all.

  8. #23
    JamieAnn Guest
    Quote Originally Posted by LindaRacine View Post
    Hi...

    I've found a huge span between conservative and radical surgeons. I personally have a lot more respect for conservative surgeons, and would personally choose to wait. I've said many times that adult patients with little or no pain going into surgery seem to have the worst outcomes.

    Were you told that severe lumbar curves can cause kidney and gastrointestinal issues? I'm not aware of any such research, and would be interested to know if there is any.

    Regards,
    Linda
    Yikes, that's quite a statement! That's precisely what I fear actually. I'm glad to see that others disagree with this, but this is still what concerns me about having surgery. I do feel pain, but again I'm stuck on the levels of pain that people claim to have. I have specific pains and achiness - and what I would say "discomfort" in general. But I am able to do what I want and don't take painkillers to get through the day.

    Linda, I'm also curious what you mean by radical - just those who are willing to do surgery without waiting?

  9. #24
    Join Date
    Mar 2009
    Location
    Sacramento, CA area
    Posts
    189
    Quote Originally Posted by JenniferG View Post
    My surgeon told me the exact opposite. His words were, "Those with little or no pain prior to surgery, tend to have the best results." My pain was low to moderate and I'm now painfree.

    I would think that waiting would only give the pain a chance to worsen? It was certainly worsening for me.
    My surgeon also said this, as well as clarifying that he will be able to achieve much better correction now rather than later when my curve is another 10*.
    Laurie
    Age 57
    Posterior fusion w/thoracoplasty T2-L3 Oct 1, 2010
    Thoracic curve corrected from 61* to 16*
    Lumbar curve, unknown measurement
    Disfiguring back hump GONE!!
    Dr Munish Gupta
    UC Davis Medical Center, Sacramento, CA

  10. #25
    Join Date
    May 2009
    Location
    Adelaide, Australia
    Posts
    424
    My surgeon told me i would have significant pain reduction, but that it may not be completely painfree. My Neurosurgeon told me, that he was optimistic that i would be pain free. He was right! After all, he had looked after me from 2007-2009 and was the one who ordered my spinal injections when i needed them!
    Vali
    44 years young! now 45
    Surgery - June 1st, 2009
    Dr David Hall - Adelaide Spine Clinic
    St. Andrews Hospital, Adelaide, South Australia
    Pre-op curve - 58 degree lumbar
    Post -op - 5 degrees
    T11 - S1 Posterior
    L4/5 - L5/S1 Anterior Fusion

  11. #26
    Join Date
    May 2010
    Location
    Indianapolis area
    Posts
    966

    Me again

    Hello Everyone,

    I unearthed this thread -- my first post on the forum from a few years ago-- so I can continue my story and keep things contained in one place (more or less) -- I know Linda likes that!

    Anyway, I'm really going to have the surgery now! I'm scheduled for March 14th with Dr. Lenke. He has moved the date a little bit twice, so I haven't changed my signature yet. All in all, I am feeling good about things. I have my care takers in place. My mom and husband will be coming to St. Louis with me, and I have other family lined up to care for my kids for the two weeks I'll be gone.

    I've been re-reading Wolpert's book and getting my house organized. And I'm continuing to read the forum, as always. I've also been exercising more and taking my vitamins. And I lost about 15 pounds last year, so I'm close to the weight I want to be at for the surgery (could lose another 5-10, but won't sweat it if I don't).

    Long story short, everything looks good except this: it's still a big gamble. I am going in with what Dr. Lenke measures as 84 degrees thoracolumbar, something like 45 degrees thoracic. My local doc measured it at 68 thoraco, so I'm not really sure how big the major curve is. Let's just say "significant."

    I have documented progression, which is greater than 1-2 degrees per year as an adult. My curve was 33 degrees when I graduated from college. (I'm 40 now -- as of this week! Ugh.)

    So, these are "slam dunk" reasons for surgeons to recommend surgery, as far as I can tell. Very large curve and undeniable progression.

    Problem is -- I really don't have much pain. I had some sciatica last year, but it resolved when I lost weight and started eating better. I can still pretty much do whatever I want -- step aerobics, shopping, cooking, you name it. I don't run, but I never have. I do get a sore back if I lift heavy things or stand still for long periods of time, but doesn't everyone?

    So, I'm really supposed to go through with this and gamble that my pain won't be worse after recovery? Of course, I understand that the surgery and recovery itself will be very painful. I'm prepared for that (or at least as much as I can be). It's that question of chronic pain afterwards. And will it be less than the chronic pain that I'm supposedly going to have if I don't have this surgery? And then there are all the risks and complications to worry about. I have been hearing about too many cases of non-fusion lately, which makes me think the first surgery is just opening up a can of worms for future surgeries.

    I know I am going to do this. My mother retired from her job so she can take care of me and help with the kids during recovery. I guess I'm just looking for reassurance that this really is the right thing to do. I read Linda's post on a different thread that reminded us once again that adults going into surgery without much pain sometimes regret having the surgery. Am I going to be one of those adults? On the other hand, is it wise to delay surgery on an 80-something degree progressive curve? Thoughts?

    Sorry for the rambling. You'll probably be hearing a lot from me over the next two months. I have already gotten invaluable advice and inspiration from this forum. So, thank you!

    Evelyn
    age 44
    80* thoracolumbar; 40* thoracic
    Reduced to ~16* thoracolumbar; ~0* thoracic
    Surgery 3/14/12 with Dr. Lenke, T4 to S1 with pelvic fixation
    Not "confused" anymore, but don't know how to change my username.

  12. #27
    Join Date
    Oct 2011
    Location
    East Central FL
    Posts
    192
    Although I can't address your pain issue, I'm so thrilled & relieved you've chosen Dr Lenke. And that you have caregivers lined up not only for your kids but for yourself. Without surgery progression will continue to get worse, it will affect your organs & you therefore will end up in pain at some point. And you're young & active now, which will help the success of your surgery & recovery. IMO, you're doing everything right to avoid a rough future, and you've put your future in the skill of the foremost scoli surgeon. Wishing you peace about your decision and the best outcome possible!

  13. #28
    Join Date
    May 2009
    Posts
    3,745
    hi Ev
    congratulations on making the decision and booking the date!

    how much more progression could you expect if you didn't have the surgery...?
    did you ever ask any surgeon that question....?
    your curve must be large...Dr Lenke stopped taking patients without big curves
    a while ago, didn't he....? so just that you "qualify" to be his patient says something!

    have you considered how long your luck would hold, not having pain with such
    a big curve....?
    i managed my scoli very well until i herniated discs in lower spine...that
    happened when i lifted a little kindergarten chair at work....at around age 50...
    personally, i think not only do the odds of injuring one's back increase with age, but
    i think they also increase with having scoli....so age plus scoli, in my book, makes injury more likely....
    that's just my view of it...
    if you consider that possibility, having the surgery while you are young-ER
    is wise...and at your age, you are still young-ER...
    happy birthday, by the way...

    best of luck....
    jess

  14. #29
    Join Date
    Jan 2008
    Location
    Oregon
    Posts
    1,161
    Hi Evelyn,

    I know how tough this decision is! I wonder if you have followed the posts by golfnut (Karen)--she was in your similar situation with a very large curve but little pain, and she has had a fabulous outcome with Dr Lenke. It might help you to read back through some of her threads. She is just past one year post-op and I believe very happy.

    Best of luck,
    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

  15. #30
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,903
    I am glad you made a decision.

    I find the comment about a 45* compensatory T curve possibly compromising organs coming from an orthopedic surgeon to be mildly shocking. I still find it shocking even given the progression. As far as I know, you need to get north of 90* or more for some period to demonstrate any organ compromise in adults. On the contrary, collapsing a lung during some spinal surgeries does compromise lung function for a few years as far as I know. Not sure about the thoracic insufficiency issue in small children.

    And as for the elephant in the room...

    33* at 22 years old
    80* at 39 years old

    I am guessing Dr. Hey would classify that as a collapsing spine. Pediatric orthopedic surgeons need more data on this issue. Different data will change treatment paradigms (or should). Parents and kids are presently being given what seems like potentially very wrong information.

    Good luck.
    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."

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