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Thread: Confused, not sure how to interpret the news!

  1. #1
    Join Date
    Jul 2006
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    New York
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    70

    Confused, not sure how to interpret the news!

    I finally saw Dr. Boachie few days ago and I expected to hear how much my curves had progressed since my last set of xrays in 2008, but surprisingly I was told that my curves were actually stable and there was not much progression from my initial 2004 xrays. In 2004, when I first discovered the severity of my scoliosis, my curve measurements were T 18 and L 45. In 2008, I saw Dr. Lonner who measured my curves at T 38 and L 52 and recommended surgery as there were obvious signs of progression. I opted for surgery in 2007 but didnt have go through with it, I was told that my curves were progressing and surgery was needed but I decided to wait and watch since pain at the time was not as severe as many others described here. So the years went by and pain had increased and became part of my daily life. So I figured that the increase in pain I am expiriencing is the result of my curve progrerssion and started to revisit the idea of surgery. I was starting to get prepared to hear that the curves are now bigger and based on prior evidence of progression i was certain the curves were not in 40 degree range but in 60. I decided to see Dr. Boachie since I hear how great this man is, and he said that my curves actually did not progress much since 2004 and that the curves are pretty much stable. He did say that my type of curve will progress slowly and I am a candidate for surgery but I have to decide when I should have it and that I need to be mentally and physically prepared for it and when I am ready then I should have the surgery. Basically, he suggested to either wait and get proper pain management treatments and deal with pain or to do the surgery now but that it is up to me and that this surgery is not urgent. When I asked him whether he recommends that that I have the surgery now as oppose to later, he then suggested to do the MRI of lumbar spine and to see if my discs are not worn out then it makes sense to do the surgery sooner then later in order to avoid fusion to the sacrum. He said he prefers to just fuse the lumbar area and not touch the thoracic curve as it is compensatory and will prob lessen on its own after lumbar fusion, which is complete different then other surgeons approach.

    I am so confused now. Although this is probably good news that the curves had not progressed and are stable, I don't know how to feel. I am happy the curves are stable but my pain is worse then ever. Then again, I like many othere here question our pain, maybe it is normal after all to have back pain? Doctors simple explanation to my question that how is it possible that I was told that my curves are progressing at about 2 degress a year to all of the sudden now hear that they never progressed, his only explanation was that there are margins of error and everyone measurements may differ. But, I was frustrated and so furious because there was a big margin of error, a whole 10 degrees in lumbar and 20 degrees in thoracic. How could this be? I was very upset and confused for a couple of days and kind of dissapointed.

    I think I was prepared over the years that eventually i will have to face the surgery but I thought that seeing the progression will lead me to deciding to have the surgery. Even though the pain is indicating that i am feeling alot worse over the years, I am still very afraid of the surgery. ITs something I have no control over and I usually like to feel in control. I have been expiriencing more and more pain in recent years but more so lately. I no longer wear heels or do activities that involve alot of walking or standing. I am feeling alot of what people have described on this forum as their limitations and I can so relate to them. I feel so much pain after just preparing a meal and having family over for dinner. It really sucks to feel this way every day, I am only 30 but I feel like im twice my age! Surgery is probably the solution to my problems but I am still so afraid of it. I cant imagine living this way for the rest of my life either so I probably will have to face the reality sooner then later!

    Hope to have the MRI done soon and take it from there.

    Thanks to all for listening and maybe if you can share your thoughts on this and maybe even had similar happen to you?

    Mariya
    30 yrs, mom to two girls ages 9 and 7
    8/9/04 - 18* thoracic and 42* lumbar
    3/7/06 - 22* thoracic and 45* lumbar (38*kyphosis)
    4/8/08 - 38* thoracic and 50-52* lumbar (54* kyphosis)

    2007 - Scheduled surgery but cancelled due to no major health issues at the time.
    2011 - Back pain, spasms, sciatica, difficulty doing any physical work/activities w/o following back pain and spasms. Revisiting surgery decision and soon to schedule a doctors appointment to determine the progression since 2008.

  2. #2
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,797
    Hi Mariya...

    In the last few years, I think many have come to realize that curve increases have relatively little correlation to pain increases. In adults, pain comes mostly from disc degeneration and stenosis. While those things probably increase with the degeneration of the spine, a lot of degeneration is going to happen whether the curve increases or not.

    You're the only one who truly knows whether it's time for you to have surgery. Don't get hung up on the size of your curves. Best of luck in making the right decision.

    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
    ---------------------------------------------------------------------------------------------------------------------------------------------------
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  3. #3
    Join Date
    Mar 2010
    Posts
    2,755
    Hi there, Mariya.

    I'm kind of in your same boat. My curves are progressing and I'm 43. I have pain that limits my activities unless I'm tanked on pain meds, which is more often than I would prefer. My curves are in the 40's, the top one in upper 40's and bottom one in upper 30's or lower 40's depending on who measures them. My problem is, like you, surgery scares the heck out of me! This might sound weird, but for that reason, I want to get it over with since I'm progressing. I hate having it loom like a dark cloud over my head. I want it in the past so I can move on with my life without that dark cloud and fear. My surgeon wants me to wain until my curves are in their 60's before he will do surgery (at least that's what he told me at my last appt.). This is inconsistant with what every other doctor has told me, including HIM when I first saw him. My insurance won't let me get a second opinion, so I'm stuck in pain, waiting.......and waiting..... The thing that really upsets me is that if I wait that long, I will probably only get correction to where I started out with to begin with and I'm not getting any younger.

    You have age on your side. The younger you are, the better you seem to recover. I know you were hoping to hear that you "need" surgery, that way, in a sense, the decision is taken out of your hands. But at least you have a decision and a doctor who is willing to help you. I would go ahead with the MRI for sure, as there may be other stuff going on like degenerative disc disease (I have it and it is very painful). If that is the case, having surgery now is probably the best thing. The other advice that I can offer to you is to go back to see Dr. Lonner and see what he says. Both doctors are highly respected and skilled surgeons. Then you can decide if you want the longer or shorter fusion. Maybe Dr. Lonner can explain to you why he wanted to do the longer vs. the shorter fusion. So then you can clear things up in your own mind.

    I do understand your conundrum, really. But, honestly, YOU deciding you want surgery isn't a bad thing if this is a dark cloud like it is for me. Maybe, since you've prepared yourself for it, it's time. They do say, however, that surgery is no guarantee of pain relief. I put it to one doctor this way: I'm in pain now, so if the surgery doesn't work and I'm still in pain, what have I lost? I could at least say that I've tried everything to manage the pain in hopes of not being on narcotics for life. So for you, maybe it's the same thing. People don't understand when we want to have the surgery to get it over with that we are not surgery seekers. It's quite the opposite, actually. It's our fear that wants us to get past it rather than knowing it's in our future. I hope I've made sense. My thoughts and best wishes go your way in whatever you decide to do.
    Last edited by rohrer01; 01-13-2012 at 10:40 PM.

  4. #4
    Join Date
    Apr 2010
    Location
    Easton PA
    Posts
    182
    Hi Mariya,
    I can certainly empathize with you. I had all the same concerns, fears and frustration. But, my advise to you is to not rush in to the surgery, just to "get it over with". If you only have 2 sets of x-rays to document progression, I really don't feel that is enough. I had 20 years worth of x-rays, and there is a big difference in measurements, depending on who does them. Being off by 10 degrees is not that unusual.
    Dr. Boachie tends to be as conservative as possible. I would say, if you can avoid the thoracic fusion, do so. He did offer that option to me also. My thoracic curve was in the 50's, but over the years, didn't progress. But, he did say, in order to do that, he would have to do the anterior and posterior approach. After talking to people who had that type of surgery, I chose to avoid that. Maybe, in your case, since you are so much younger, it wouldn't be necessary.
    Remember, there is no guarantee that surgery will relieve your pain. In my case, it did relieve the lumbar pain, but now I have nerve pain, and extreme muscle tightness, which is constant. Have you tried physical therapy, yoga, massage therapy, etc.? All those things kept me functional, in to my 50's. I am in no way trying to discourage you from having the surgery. Only you know how much pain you are in. I agree that the MRI is a good idea. You are young, and have plenty of time to decide. I know what it is to live with the "black cloud" over your head, I did for 2 years while contemplating surgery. I sometimes think I went through with the surgery, just to get rid of it. That is not a good reason to have surgery. Just take your time, explore all options, and when you decide what is right for you, don't let other people dissuade you.
    Good Luck!
    Lori in PA, 52 yrs. old
    T54/L72
    Surgery 6/7/11, T3-S1, all posterior, with pelvic anchors
    Gained 2 inches!
    Dr. Boachie, HSS, NYC
    12/10/13 Hardware Removal for infection
    Lost 2", gained PJK!

  5. #5
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,901
    Quote Originally Posted by mariya View Post
    But, I was frustrated and so furious because there was a big margin of error, a whole 10 degrees in lumbar and 20 degrees in thoracic. How could this be? I was very upset and confused for a couple of days and kind of dissapointed.
    I'm going to suggest he was addressing only the structural (lumbar) curve with this comment. Plus or minus 10* between readers is commonly quoted. Because I don't think it's possible to blame measurement error on the 20* range in the thoracic curve, I doubt he was doing that. I don't think the comment was intended to address the thoracic curve.

    Another surgeon, Dr. Hey, has referred to 20* increases even in compensatory curves and in more time than your case as "collapsing" as far as I can tell. Your T curve moved move than 2* a year for 8 years. Of course all cases are different and he might not use that term in your case for some reason. Did Boachie have the 2004 radiographs in front of him? It's good that he still feels he doesn't need to extend the fusion past the lumbar.
    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."

  6. #6
    Join Date
    Jun 2006
    Location
    Texas
    Posts
    137

    similar curve situation

    Hi Mariya,

    I understand how you feel, I have been told that my curves are more or less stable since my initial Xrays in 1985.

    I finally found a surgeon I like, that I trust, and he measured my curves within 2 degrees of the initial measurements from 1985. Go figure. Other surgeons measured the curves at a worse degree, but last year this surgeon (without seeing my previous Xrays) told me my curves were more-or-less the same degree.

    The reasons I am going forward with surgery: first, I found a surgeon that "clicked" - he may not like me, but I trust him, and I believe he is a capable, intelligent surgeon. Second, my pain has worsened. Slowly, almost imperceptibly, the pain has become a part of every activity, it even accompanies me in my sleep- so that I dream about situations causing me pain, only to wake up and realize that I really do have pain. Third, another doctor told me that to do nothing will basically allow my bones to fuse as they are- crooked. that's where a lot of my pain is coming from: my spine is trying to fuse itself, on my MRI I have many bone spurs, arthritic changes which shows that the bones are trying to fuse together. This happens to everyone but our crooked spines are under more pressure than "normal" straight spines...

    <sigh> so, realizing that all my Xrays/ MRIs do state "calcification" bone spurs" and the ominous but vague "degenerative changes".... i recognize that I am not getting any better. Even stable curvature does NOT mean "stable": as the bones fuse, the degenerative changes will cause pressure on the nerves, increased pain, etc. I wish I had found the courage to do this five years ago- because now I must be fused down to L4. But I am acting now, because I don't want to be fused to the pelvis ( altho' that may be necessary a few yrs down the road)..

    It takes tremendous courage, I don't know how I found that courage, - it is God's grace- but I did have C spine fusion last November- which was very frightening, he fused C4-C5-C6-C7. I needed C3 fused as well, but I chickened out.

    I will probably schedule the scoliosis surgery for November of this year- T2- L4. I understand how you feel, my advice is to get busy making doctor's appointments. I went to 5 different spinal surgeons before finding one that I felt comfortable with- that I relaxed with. Insurance helps: I joke- I tell people, I need a sign for my office at work "WILL WORK FOR HEALTH BENEFITS" LOL! but I was truly blessed to have two insurances, so that allowed me some freedom in choosing surgeons.

    Once you decide on a surgeon- then take a deep breath, and move forward with your plans. I am forever grateful for this forum, I have been a member for 6 yrs now and am finally moving forward. The forum will be here for you- to answer questions, offer resources, and offer support - best wishes for peace of mind as you contemplate your medical decision. Jamie in Texas
    57 years old.
    thoracic curve 68 degrees
    lumbar-sacral curve +/- 41 degrees
    Cspine C3- C7 fusion Nov. 2011 <done! success!!>, then scoli surgery T2- L4 or maybe to sacrum.
    Discogram/ myelogram pending. Surgery to be scheduled, maybe fall 2015. <scared but I know this is not going to get better>
    THANKS TO EVERYONE FOR SHARING EXPERIENCES AND KNOWLEDGE!

  7. #7
    Join Date
    Jul 2006
    Location
    New York
    Posts
    70

    Thank You all for sharing your opinions and expiriences!

    I guess my main concern going into surgery is that (1) pain may not go away, (2) risks associated with any surgery and especially spine surgery ad (3) that I may get complications and there is no going back!!!

    I had documented progression since 2004, next being in 2008 and now in 2012. I understand now that its not all that uncommon to see such variationg in the degree measurements. I was not aware that its possible. I believed that my curves were progresing due to the report done by Dr. Lonner in 2008.

    The pain I am expriencing is more after I do some kind of physical activity. Whether its washing dishes, which i havent done in years thanks to a washing machine, cooking, sitting folding laundry, walking, standing, etc. If I dont do any of these things then I am pain free. I do have kids and I was so much more active with them before and lately I just always find that I choose to do something local with them or just go to eat out or to movies. I also dont do the house chores since I have a cleaning lady and a nanny that does all that for me. I am grateful to my husband who is willing to get me help and its helping. But I still end up with a back ache by end of the day after coming home from a sitting job and just serving dinner and helping with homework.

    I really do want to get this over with. At times I feel like in few years i wont be able to simply do anything with out pain. I havent tried any conservative treatments but even that I am sure will not save me for ever. I feel like I will get some help with pain but will probably end up like most having surgery done at some point later on in life. The only problem is I dont want to feel like I missed a great part of my life living with pain and dealing with it to then face the surgery anyway.

    This is def not an easy decision but I just cant come to a decision yet. I want to have more kids and its a constant battle in my mind. I know it will only make my spine curve and i will be in much more pain ultimately. But its been haunting me for years and I am still trying to figure out the best option. Its not easy bc I wish I could spend all this precious time spending time with my family and friends and I simply feel trapped!!

    I am not going to lie and say that pain is the only reason i want this surgery, i really want the improvement of my appearance. Its like I always have to try extra hard to find great clothes that I like to wear and hides my curve. Its challenging but definetely not the worse thing that can happen.

    I am fortunate that I have some of the best doctors in my area and that my insurance is willing to pay these doctors for my surgery. I guess the next thing is that MRI which hopefully will give us more infomation on the disks.

    The one thing that does bother me the most which I feel like is the reason I just want to get this over with is the way I feel most of the time:tired, achy, and stressed out because of it. I just wish I could look forward to more things in life like I used to but no longer do.

    I am glad to see so many positive outcomes on this forum and mostly I am happy for people that describe their life after surgery as PAIN FREE. That is really great to hear and I too hope one day to be there!
    30 yrs, mom to two girls ages 9 and 7
    8/9/04 - 18* thoracic and 42* lumbar
    3/7/06 - 22* thoracic and 45* lumbar (38*kyphosis)
    4/8/08 - 38* thoracic and 50-52* lumbar (54* kyphosis)

    2007 - Scheduled surgery but cancelled due to no major health issues at the time.
    2011 - Back pain, spasms, sciatica, difficulty doing any physical work/activities w/o following back pain and spasms. Revisiting surgery decision and soon to schedule a doctors appointment to determine the progression since 2008.

  8. #8
    Join Date
    Mar 2010
    Posts
    2,755
    Mariya,

    It sounds like many of your symptoms could be age related or due to another infirmity. I'm not going to sit here and try to diagnose you, as I'm not a doctor. But, with that said, I experienced some of the same things that you are describing right around age 30. I was also going through a bad flare-up at the time. I realize that 30 isn't that old, but some of us start feeling our youth slip away, slowly. You are by no means too old to have more babies, if that is what you want. My husband and I tried having babies of our own when I was 34. We got pregnant several times with no success, yet. I'm 43 and still have very good egg reserve, so my OB thinks it is still quite possible for us. So I asked her, "Which should I do first, fix the spine or try to have a baby?" Her answer was to have the baby first. Now, you have to remember that I have 13 years on you, but that might be a valid question for your OB. Many women with scoliosis are just fine to have babies, and many women who have had surgery are just fine having babies. I guess you have to figure in your recovery time. If your lower back already hurts, you might think of what the third trimester is going to feel like. My scoliosis is all thoracic, so pregnancies never affected my pain level from the scoli itself. Although, my OB thinks that NOW it will cause more neck pain because of my hypokyphosis. But that's me, not you. Are you able to see Dr. Lonner again after you get your MRI for his opinion? I would also strongly suggest talking to the scoliosis doctor(s) about your desire to have a baby. I talked to mine and he said I was fine to go ahead. But from the OB perspective, you might want to have your day three FSH checked to see how close to menopause you are and talk to your OB about the scoliosis dilemma as well. I know it's a lot. But the more information you have, the easier your decision will be.

    Sorry if my thoughts were scrambled up and disorganized. That's how I think sometimes. Best wishes.

  9. #9
    Join Date
    May 2010
    Location
    Indianapolis area
    Posts
    966
    Hi there,

    I'm just wondering, have you done everything you can to address the pain? I was starting to be in a lot of pain last year, and I reduced the pain significantly by losing about 20 pounds, exercising more frequently and wearing heavily padded shoes (think Sketchers) ALL the time. Your curves are not tremendously large and you are young. If you don't have documented progression, I wouldn't rush into this surgery. It is not a guarantee to fix your pain issues. I would try everything you can to deal with the pain in a non-surgical manner, and maybe you can buy yourself another decade (or more!) without surgery. That will give you time to complete your family, if that's what you want to do.

    Best wishes,
    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.

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