Page 1 of 12 12311 ... LastLast
Results 1 to 15 of 175

Thread: decisions, decisions and different opinions

  1. #1
    Join Date
    May 2010
    Location
    Indianapolis area
    Posts
    966

    Question Facing Surgery Decision - need advice, please!

    Hello all,

    I am new to the Forum and would love to have feedback from those of you who have more experience with this. I apologize in advance for the lengthy question/explanation.

    My regular doctor advised surgery several months ago due to significant progression of my curve(s) in adulthood. I am 38 years old with a 67* thoracolumbar structural curve with significant rotation and a 49* thoracic compensatory curve. This has progressed from 55* at age 33 and 33 degrees at age 22. I am not in much pain, just your basic fatigue at the end of the day or after standing too long.

    I finally said "uncle" and decided I would have the surgery to prevent future complications, which were explained to me as progressive deformity, potential organ failure (kidneys and gastrointestinal since mine is a lower curve) and increasing lower back pain and disc instability.

    As part of the process I got a second opinion from a doc who says actually he would wait and allow my curve to progress further. Since I am not in signif. pain and I don't face cardiopulmonary issues, there is no harm in delaying, according to second opinion. Also both docs said because of the need to fuse to L4 or L5 I am at significant risk for lower back pain after surgery as well as long term disc issues.

    This is a good time for me to have surgery if I'm going to have it because I still have help (my mom, age 67 and in good health) and my kids are 4 and 7, so not too much carrying. I worry that if I put it off I won't have someone to help me and may even be taking care of others (in-laws are elderly). Plus right now I'm a stay-at-home mom and in a few years I might go back to work.

    On the other hand doc #2 says there is a small chance I will never need surgery. So obvioulsy I don't want to go through this if I don't have to.

    How do you make these decisions? And what's up with doctors disagreeing so much? What is the real risk for someone with a lower curve? I am getting conflicting information on the organ squeeze issue. And finally, is the compensatory curve likely to become structural and result in cardiopulmonary issues? I can take deformity but would rather address it now if it is eventually going to become life threatening! Would love any input.

    Thanks in advance!
    Last edited by Confusedmom; 05-17-2010 at 05:03 PM.
    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.

  2. #2
    Join Date
    Feb 2010
    Posts
    140
    Hi there, I completely undersand what a difficult decision this is. I'm about 2 months post-op and wouldn't change a thing. I, like you, had very little pain or real issues with my curve, however my curve was clearly progressing with no signs of it letting up. My doc, and the doctor I got a second opinion from, said there was no huge rush, but they both agreed that surgery in the next 1-2 years was needed. For me, I made up my mind when the doc said it was time I wouldn't hesititate to get it done. My doc followed my progress for several years before saying it was time for surgery so I was confident he wasn't rushing to cut me open. Honestly, the surgery is no walk in the park but its not nearly as bad as I expected it might be.

    Rich
    Pre-Surgery Lumbar 65 degrees
    A/P Fusion T10-Pelvis by Dr. Christopher Good
    Virginia Spine Institute, Reston, VA 3/17/10, 3/18/10
    Post-Surgery Lumbar 19 degrees, and 2" in height

  3. #3
    Join Date
    May 2009
    Posts
    3,745
    hmmmm...dont understand the disc problem...do you have disc problems now? if so, i would think they would address that during surgery...?
    i need fusion T11-pelvis, and they will, if i have the surgery (minimally invasive approach) "clean out the discs and put spacers in"...
    if you dont have disc problems now, why are they predicting that you will?
    perhaps another consult with another surgeon is in order..?

    jess

  4. #4
    Join Date
    May 2009
    Location
    Adelaide, Australia
    Posts
    424
    Hi and welcome to the forum. Are these two doctors, Scoliosis surgeons? I ask because I have to wonder how two opinions could differ so much. I had three opinions - 2 spinal and 1 neuro. No.1 spinal said he didn't know where to start and No. 2 spinal and neuro agreed on the levels and that it should be done in the next 12 months. (Surgery was June 1st, 2009) The reasoning for this was because i had gone from 50 degrees in June 2008 to 58 in March 2009. Progression was roughly 1 degree per month. I had really bad pain consistently. I also had a tear at i think L4/5??? The other thing they mentioned was the possibility of me going into menopause and developing osteoporosis if i waited so much longer. It is almost 12 months since surgery and i am ever so grateful to my Doctors for giving me my life back. I suggest seeking maybe one more opinion. Help is definitely needed in the early stages and if you are looking to return to work, at least you would have had at least 12 months or more to rcover properly without the pressure of recovering quickly just so you can return to work. I wish you well in your decision making and if you have any further questions, please ask. The members on this forum are awesome and i'm sure that with a little bit of evveryones personal experience, it may help ease your mind. Have a nice day
    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

  5. #5
    Join Date
    Feb 2010
    Posts
    460
    I'm also interested to know if you saw scoliosis specialists? I think if it were me, with such differing opinions, I would seek another opinion, and definitely from a scoliosis expert!
    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.

  6. #6
    Join Date
    Feb 2010
    Location
    Reading, PA
    Posts
    93
    I agree with others on getting another opinion, and with a scoliosis surgeon. My first two surgeons had conflicting opinions and the second surgeon actually requested for me to seek a third opinion. He literally said it would be a "tie breaker". However, my third opinion didn't necessarily match either of the first two. I chose to go with my lucky "third times the charm" opinion. I'm scheduled for surgery on Aug. 5th.

    It's not easy making a decision and no one can make it for you. The reasons I decided to do the surgery now are very close to some things you mentioned. My daughter, now 3, is potty trained and doesn't need to be carried anymore. Right now I can't have another baby until my daughter goes to school so it's a good time for me. Plus, I have support from family. Rationally these were very good points in my mind, but what tipped the scale for me was this knowing feeling inside that this is what I was supposed to do.

    Just as a side note, my second opinion said he would have to fuse me from T4 to L5. My surgeon (third opinion) will be fusing me from T1 to L1.
    Tiffany K
    I'm not short, I'm fun size!

    29 years old
    4'11", never braced
    Pre-surgery, 52 T6 to T12, 35 T12 to L4
    T1-L2, Posterior 8/5/2010, gained 1"

    http://www.facebook.com/album.php?ai...9&l=03212f3e17

  7. #7
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,797
    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

  8. #8
    Join Date
    Oct 2009
    Location
    PA
    Posts
    798
    Confused,

    I'm especially interested in your dilemma since my own curves are less than yours, though I have significant pain and also lumbar kyphosis.. You are confirming my suspicion that my primary pain is not so much from the scoliosis as the severe lumbar disk degeneration and kyphosis ("poor sagittal balance" I think it's called, if I'm learning the lingo).

    Which brings me to my constant fear that the surgery may not relieve the pain or even make it worse. I know everyone fears that (especially knowing that those ARE real possibilities). In my case, I worry that it may be because the disk damage has already occurred. Wish I could post the Xrays as compared to a "normal" Xray LindaRacine posted recently, mine look as if they came from a different species - or at least, a deteriorated skeleton .

    I very much sympathize and join the chorus urging you to seek more opinions. There IS a certain crowd here who seem to feel comfortable with their decision to have surgery as prophylaxis (maybe against becoming "like me" - remembering the button that reads "Did you ever think that your main function in life is to serve as a horrible example?"),

    I do concur that if possible, it's certainly to be avoided though not at all costs.

    Go to other trusted surgeons - more than one, I say. The more you learn, the more you know! It's a very serious decision.

    Note there is also a movement (well, sort of) worth highlighting that says exercise can stabilize curves - though it's not a small investment of time. I myself am finding that it significantly reduces pain (and may well have kept them stable for decades before I slacked off for a decade with disaterous results - or was it coincidence? ).

    It's hard to keep it up, though. OTOH I'm a lot older than you. At your age, you might want to give it a whirl. For that, you would need to search on "non-surgical" (treatments) and look up "dailystrength".

    Best of luck!

    Amanda

    Ps I agree too in respecting "conservative" surgeons. After all a surgeon is trained to cut to problem solve. Therefore to seek an alternative and reserve that methodology except as a proven last resort, is like the proverbial hammer seeing things as other than a nail!
    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

  9. #9
    Join Date
    May 2009
    Location
    Topeka, KS
    Posts
    397
    Good Morning: There has to be something to be said for someone having surgery before being in pure agony like I was. When I finally got in to my dr to have my surgery I was in such agony it hurt to sniffle, breathe and even laugh. I couldn't hardly walk into work without having to stop and rest on the way in. I was in such pain the only relief I got was lying down in bed and sleeping. I didn't want to go anywhere at all because I knew I would be in pure agony. And, now that I am postop, not that I don't have pain now, but I know this pain will go away. That pain preoperatively was with me up until the point they put me to sleep for my full fusion to pelvis. This surgery has been the toughest, but best thing I have ever done for myself. I won't say it was not an uphill battle at times, but it has been well worth it. I still look in the mirror in pure amazement! My ribs no longer over ride the waist on my jeans. I no longer have the numbness/pain in my right foot. I have some thigh pain on my left side, but they say can take 6-9 mos for that to heal. So, my advice, bottom line, don't wait until you are in pure agony. If you can get in to get surgery before then, and your curve is obviously progressing, just do it. You'll be very glad you did!!!!
    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

  10. #10
    Join Date
    May 2009
    Posts
    3,745
    i kinda' agree with Linda...if you dont have pain, i'd seriously consider waiting...i am in significant, serious pain and have been delaying and delaying fusion (to pelvis)!
    this surgery is forever and ever and ever...i wouldnt do it without pain that was debilitating! that's just my opinion....but please remember.... no one can guarantee the outcome, as Linda pointed out.....

    best of luck
    jess

  11. #11
    Join Date
    Oct 2005
    Location
    Chicago north suburb
    Posts
    774
    At 38 you state that you have a 67-degree thoracolumbar curve with significant rotation and documented progression of 12 degrees in five years. Without knowing what kind of doctors you have been seeing, I can assure you that no competent adult scoliosis surgeon would suggest that you may never need surgery. Your spine is collapsing and it will continue to collapse. I would address the problem now and not wait for it to worsen. My thoracolumbar curve reached 80 degrees and I had a significant deformity. I underwent a 12-hour surgery that included osteotemies and laminectomies. While in the hospital my surgeon said he wished he could have treated me when I was younger. At age 59 my spine was rigid and I presented quite a challenge to my surgeon. And consequently I did not get the dramatic cosmetic improvement for which I hoped. While Im much improved, I still have a deformity. Do these docs want you to wait until you have a 90 degree curve? As others have suggested, I would get opinions from qualified adult scoliosis specialists.

  12. #12
    Join Date
    Aug 2009
    Location
    York, PA
    Posts
    332
    As you can see from my signature, I had a 92 lumbar curve going into surgery. Although it was not carefully monitored, I know my curve progressed significantly throughout my adult years. I had little or no pain up until the last few years and it seemed to get worse with menopause. As severe as my curve was, I had no gastro-intestinal issues and no pulmonary problems from the thoracic. Several years ago, I wouldn't have dreamed of doing this surgery. I pretty much went through life in denial about its progression, dressed to cover up and bought bigger bras! Anyway, even though my spine was very stiff which limited correction, I believe it was the right time in my life to do it. I do not exaggerate when I say that all of my pre-op pain and nerve symptoms were relieved and it was getting to the point where they were interfering with my life. I found a great Dr. and have been blessed with an amazingly rapid recovery. Probably one of the hardest, scariest decisions I ever made but it turned out to be one of the best. Consult with a good adult scoliosis specialist and weigh your options carefully. Had I done it when I was younger, I might have had a better correction but it's hard to talk yourself into something this big if you're not having pain. Also, the longer you wait, the more advanced and refined the technology becomes. I think you'll know when it's right for you. Best of luck!


    Anne in PA
    Age 58
    Diagnosed at age 14, untreated, no problem until age 50
    T4 to sacrum fusion
    63 thoracic now 35, 92 lumbar now 53
    Dr. Baron Lonner, 2/2/10
    Am pain-free, balanced, happy & an inch taller !

  13. #13
    Join Date
    May 2010
    Location
    Indianapolis area
    Posts
    966

    Red face Wow--thanks for the feedback!

    Hello all,

    I am not totally sure how this works and whether I'm supposed to respond to the group or individually, but, I really want to say a huge THANK YOU to all of you. This has really been a Godsend to finally be able to "talk" to other people who understand my problem. So, thank you to the Forum and to David Wolpert whose book told me about it. (Note that NO docs I have seen mentioned it.)

    To answer a couple of questions, yes, these are scoli surgeons. However, I live in Indianapolis, a mid-market, so I know they do other spine surgeries as well. There just aren't enough cases here for scoli full time (at least not adult). So, one question I have is, is it worth travelling to find a doc who does nothing but scoli? I'm thinking St. Louis or Chicago since that's not too far.

    I was interested to know about those of you who have decided to have surgery despite not have signif. pain. What did your docs say the reason was? I am told "progressive deformity and loss of function" but so far haven't seen much function loss. Seems like lumbar curves have fewer severe consequences??? On that note, Linda, I will double check with my doc regarding his comment about potential kidney/gastro troubles.

    A couple of you asked about disk degeneration. Both docs have said that because they are fusing to L4/L5, I could expect the resulting stress on L5 to put pressure (read: pain) on my lowest disk in the long term. Right now that disk is healthy. I guess this is not an issue if you fuse to S1 or the pelvis, but they are trying to preserve flexibility if they can. Both docs have said I may actually be in worse pain following the surgery.

    Amanda, love your quote about serving as a "horrible example." Good to keep some humor about this. Well, thanks again for all the thoughts. I am definitely going to see at least one if not more than one additional surgeon. I look forward to "chatting" with you all more in the future.

    Evelyn (a.k.a. Confusedmom)
    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.

  14. #14
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,797
    Quote Originally Posted by Confusedmom View Post
    Seems like lumbar curves have fewer severe consequences???
    Lumbar curves are far more likely to be painful than thoracic curves.

  15. #15
    Join Date
    May 2010
    Posts
    41
    I had surgery at 10 years ago, at age 30. I had some pain at the time, and had experienced some progression, but it wasn't too bad yet. But I did feel like the pain was starting to sneak up on me a bit. I decided to have the surgery sooner rather than later - I agreed with the surgeon that it was likely to continue progressing, and that I would have more pain and potential lung capacity issues later, plus I felt it would be an easier recovery when I was young and healthy.

    In retrospect, I could have waited another year or two (and if I had it to do over again, I think I would have waited a bit longer)....but I'm glad I did it and have had no real problems in 10 years. So, based on my experience, I'd say wait a year and see what happens. BUT - I didn't have 12 degree progression in 5 years the way that you have. That's a big difference with your scenario.

    But you don't need to decide today. Seek out a third opinion, wait and see how you feel in 6 months when you've had a chance to digest it and think about it a bit. That shouldn't make much of a difference in your progression or your life situation - so don't rush it.

Tags for this Thread

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •