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Thread: what to do...what to do

  1. #16
    Join Date
    Jan 2009
    Location
    Virginia Beach, VA
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    455
    Melissa,

    Everyone does have that "A-ha" moment and it still comes with a great deal of fear. That's normal. I was seen at Boston's Childrens Hospital and wore the Boston Brace and was seen By Doctor Hall the maker of the brace. My parents were advised that if I didn't have surgery as a child I would have trouble later on in life. I'll give Dr. Hall an A on that call.

    I was in great shape, competing in bodybuilding and out of the blue my curve started to rapidly progress and do a great deal of damage along the way. It's hard to say what any particular curve will do and when or why.

    I can honestly say that if I could have saved myself the 6 years of debilitating pain I would have had my surgery sooner. I couldn't get my primary care doc's to listen to me. I do think if I had my surgery prior to those five years than my recovery would have been much better than it has been. I also have a three year old and that has slowed progress down which I knew it would....thank goodness my older boys and husband are such great helps!

    Good luck with your decision as it's not an easy one and only you can make it. With that said, at least you have the support of your husband and that is a big piece of the puzzle! Take care and keep us posted.
    Susan

    Diagnosed at 10, Boston brace from 11-13 yrs old.
    50* Lumbar w/ 5 centimeter shift to the left and slight rib hump...
    Surgery Date: April 15 and April 22, 2009
    X-LIF approach for disc repair L5,L4,L3,L2
    Posterior Approach for fusions L5-T5
    Dr. Fox @ Naval Medical Center Portsmouth
    Nice and straight now!!!!!

  2. #17
    Join Date
    Sep 2008
    Location
    MA
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    36
    I meant Linda..not Lisa...sorry!

    Also, did you notice a significant improvement in the appearance of you back/ribs?

    Not to sound too vain, but that is a major driving force in wanting to have surgery.

  3. #18
    Join Date
    May 2009
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    3,745
    all of the surgeons i saw, Linda, made sure to say that there was "no guarantee" i wouldn't have some pain after healing...but every one of them said they expected me to be in less pain than before surgery (after healing, of course)...one guy said he would be "very surprised" if i didn't have MUCH less pain after i healed....
    every pain doctor, as i mentioned, said just about the opposite....

    actually, i would expect to get a lot of pain relief from having degenerative discs fixed with side approach..but don't know how i feel about posterior approach for scoli...and whatever they would have to do for listhesis, hypokyphosis, etc...Lonner mentioned a few "otomies" and "ectomies" i would need...
    i do know i would not consider anything besides minimally invasive approach...

    i hope you are healing well, Linda...i think about you often and hope things are getting better as the days pass...

    jess
    Last edited by jrnyc; 04-13-2011 at 06:15 PM.

  4. #19
    Join Date
    Aug 2009
    Location
    York, PA
    Posts
    332
    I will chime in and say that my curves and pain definitely increased with menopause, although my curves were pretty bad all along. I will also say that I am virtually pain free at about 14 months post op. I am doing some physical therapy right now for strengthening and conditioning and it's helping a lot. PT folks are amazed at what I can do and are doing an excellent job of core strengthening without putting any stress on my back. My situation was considerably different since I was older and curves had become very severe. It took a lot for me to reach my "a-ha" moment, but once I made that decision, there was no turning back. Would definitely get a second opinion in your case. Best of luck to you!
    Last edited by ADMoul; 04-13-2011 at 08:15 PM. Reason: grammar error


    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 !

  5. #20
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    May 2008
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    reno,nevada
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    Quote Originally Posted by Singer View Post
    The issue of pain is so interesting because it's so subjective. I don't know how anyone who had the hugely invasive anterior-release procedure (in which you're basically sliced all the way open from the side) can be totally pain-free. I have a lot of residual tightness, pulling, and soreness around my rib cage and upper abdomen which I assume is scar tissue. It's discomfort but not an "ouch" kind of pain. When I'm diligent about doing my core-building exercises the discomfort is less. And I feel a million times better in warm weather.

    Yes, the thoracotomies are scary. Itís the one procedure I wouldnít want to do. Linda did one of these, and many of the kyphosis patients have to do these. Ryy and Pilar also made it through this procedure. I wish she would post and let us know how she is doing....Ryy seems fine except for his neck. (kyphosis issues)
    http://en.wikipedia.org/wiki/Thoracotomy

    Both my curves were about 55 degrees when I was 30, and I waited.....My scoliosis really started to become a problem when I passed the age of 40. By the time my curves hit 70 degrees, my pain at age 49 was completely out of control.

    The one thing my surgeon told me was that I should have had my surgery years ago....I knew that, but everybody knows how that goes....
    I came out pretty good...I never expected to be mostly pain free ever again. I will have some tightness every once in a while....

    Christina
    If you have a surgery date, you are in shock. It happens to all of us. If you do chicken out, give your surgeon at least 30 days notice. He will understand. I say this because I chickened out in 2005.

    Welcome to the forum
    Ed
    49 yr old male, now 58, the new 53...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  6. #21
    Join Date
    May 2010
    Location
    Indianapolis area
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    966
    Christina,

    I think it's worth posting here that some surgeons do not consider curves in the 40s surgical. I've heard minimum cutoffs of 50, 60 and 70 degrees. So, by that token, if you are in the 40s, not sure if you are still progressing, and not in a lot of pain, I would take your time getting other opinions and deciding. There really is not a rush. I have been thinking about it for nine years and have finally decided to have surgery next year now that the progression is getting out of hand and I'm starting to have regular leg pain. Oh, I would also definitely make sure you are seeing one of the top experts in the field. 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.

  7. #22
    Join Date
    May 2010
    Location
    Indianapolis area
    Posts
    966
    Oops, just re-read that you are seeing Dr. Rand--so it appears you are in good hands!

    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.

  8. #23
    Join Date
    Sep 2008
    Location
    MA
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    36
    Thanks Evelyn and Ed,

    I will keep that 30 days in mind in case I do chicken out. I know there's no rush to get the surgery, but soon I want to start trying to have kids. So I wanted to do it before that. We'll see.

    I really appreciate your time and help.

    -Christina

  9. #24
    Join Date
    Aug 2008
    Location
    Indianapolis, IN
    Posts
    416

    Wink

    Quote Originally Posted by jeneemohler View Post
    I would imagine that there are different types of "pain" that we are talking about. Some are specific, measurable pains that can be dealt with. Other pains are sometimes muscular, or just a nebulous, generalized pain. Those are hard to pinpoint, let alone "cure".
    Just in my own personal case, the majority of my pain was due to nerve impingement, spinal cord compression, and the "crushed" feeling in my torso. And some general muscle pains. When those nerves were released in surgery, there was a huge relief from pain. It is still there at times when I'm tired or have overdone it, but it is much less severe. It is not that unrelenting, 24/7 type of pain anymore. And that crushed feeling is GONE. I expect my occasional muscular backaches will continue for the rest of my life. But that is common for even a NON scoli person. No surgery is ever a guarantee. We just research the odds and hope we are on the right side of the numbers!!
    Jenee,
    So well put!
    And I totally agree...My nerve impingement pain and "collapsing" feeling pain has been relieved also. Various muscular aches and pains will live with me forever I expect and I'm fine with that. The wonderful thing is that my world does not revolve around my back any longer ;-)))
    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.

  10. #25
    Join Date
    Oct 2008
    Location
    Orlando, FL
    Posts
    177
    Hi there Chmesh!

    I am around the same age as you, and just wanted to let you know I can totally relate to your questions/feelings!

    I am 28, married with no kids. When I had my surgery I had a double major curve of 52 degrees, T and L. Not huge curves by any means, but I will say my rotation was quite progressed. I was only progressing at about a degree a year, and my surgeon did not pressure me into having the surgery. He felt I had about 10 years to "wait and see."

    I had undergone 3 surgeries all to correct a herniated disc, and after the 3rd one actually had quite a bit of relief from my sciatic pain to the point where we were trying to start a family.

    However, around October of last year I started having horrible sciatica in my other leg, which had never had pain at all. I also was having an increasingly hard time sleeping at night, and sitting always gave me back pain, I noticed it was getting harder and harder to sit up straight. I started to freak out about getting pregnant and my curves progressing faster than they already were, or having a baby and then getting worse rapidly and needing the surgery when the baby was still very young. A lot of women on here can share their experiences with that with you, but for me I just didn't want to risk it. After already going through 3 recoveries, I knew it would be very hard to take care of a baby/child while not being able to bend/twist/lift. The women on this form who have and are doing that just blow me away!!!

    Ultimately though, my decision came down to this quote that I wrote on here when I finally decided to have the surgery:
    "even if I knew FOR SURE I wouldn't NEED the surgery until I was 50, I would still rather have the surgery NOW when I'm young, strong and healthy. I can't imagine my curves progressed over 60 degrees, and the pain and discomfort I already have getting worse. I want the best outcome possible, and the younger you are, the better the outcome (Lord willing!)."

    I still feel that way. I'm glad I did it when I was young, strong, and healthy. My pain is not gone completely in my leg, but my pain in my back is. I don't feel like I'm caving in on myself anymore, and I love being completely straight. I do not feel limited by my fusion and am getting stronger every day.

    It is also the hardest thing I've gone through, and I had a pretty uneventful recovery! If you want, you can read through my posts, my whole journey from deciding to have this surgery, to my recovery, has been documented on this forum.

    It is a very difficult decision, and I wouldn't say that pain reduction was why I had the surgery (i prayed it would be a side effect, but knew there was no guarantee). However, I have HAD pain reduction, so it definitely is possible.

    Feel free to message me if you have any questions!
    Rebecca
    Age: 28
    Dx w/ scoli @ age 12 S curves T-40* L-42*
    wore night bending brace as teenager
    Curves changed to 50's plus or minus
    herniated disc L2-3, Discectomy October 2007
    fusion L2-3 November 2008
    Revision L2-3 Fusion, Removal of hardware August 2009
    Curves measuring 52 T&L September 2010
    Fused T4-L4, all posterior December 27th 2010
    gained almost two inches in height

    Before and After Exterior
    Before and After X-rays
    My blog: http://herscoliosisjourney.blogspot.com/

  11. #26
    Join Date
    Jan 2011
    Posts
    197
    I'm surprised to hear about people planning to have children post-op. I have two friends with rods who ended up having to have revision surgery after bearing children because the pregnancies really impacted their backs. Hence, my husband and I consider the childbearing door to be shut (because I am NEVER going through this surgery again) and I'm spending part of my recovery time researching and applying for adoption.

    Am I the only one who considers the fusion to be the end of the road for child bearing? Just curious.
    Female, age 38
    4 years of bracing, concluded at 42*upper/38*lower
    currently 64*upper/40*lower
    Fused T3-L4 on Feb 23 2011
    now 32*upper/18* lower

  12. #27
    Join Date
    Jan 2006
    Location
    near Philadelphia
    Posts
    1,260
    !!!! Lily, there have been several people on the forum who have successfully had children post-op -- I hope they chime in. I can think of three off the bat but they haven't posted in a while.
    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

  13. #28
    Join Date
    Oct 2008
    Location
    Orlando, FL
    Posts
    177
    I'm not planning on even think about trying to get pregnant for at least 2 years, maybe longer. We have always planned on adoption, but want biological as well. My sugeon stressed repeatedly I can get pregnant at one year post op, and that I would be better off dealing with the weight, b/c I am fused and "reinforced" lol. I am not sure I want to put my body through it after all i've been through, but we haven't given up the idea. I talked with at least 5 women before I decided to do the surgery who got pregnant post-op and said it was easier and less painful than their pregnancies pre_op. I wouldn't have had it if it "ended" that option for us. We will probably adopt first, as it will give me longer to get strong. I do know if I ever do get pregnant, I will most likely have a c_section, as an all natural birth scares the bleep out of me lol. My surgeon made it very clear epidurals are not an option when you're fused as low as me.
    Rebecca
    Age: 28
    Dx w/ scoli @ age 12 S curves T-40* L-42*
    wore night bending brace as teenager
    Curves changed to 50's plus or minus
    herniated disc L2-3, Discectomy October 2007
    fusion L2-3 November 2008
    Revision L2-3 Fusion, Removal of hardware August 2009
    Curves measuring 52 T&L September 2010
    Fused T4-L4, all posterior December 27th 2010
    gained almost two inches in height

    Before and After Exterior
    Before and After X-rays
    My blog: http://herscoliosisjourney.blogspot.com/

  14. #29
    Join Date
    May 2009
    Posts
    3,745
    most CERTAINLY there are women on this forum who have had children AFTER fusion surgery....
    if you go to the top of the page and type in "childbirth after fusion" and click on "advanced search" it will bring up another screen...
    i put in the words "childbirth after surgery" again, checked off "forums" and "posts", (for where the search should look), unchecked "exact words" so that it would pick up all posts concerning having kids after surgery, and clicked on "search"
    it brought up MANY posts by women who report about the babies they had after fusion surgery...some go back to 2009...but i don't think that matters, if you are just interested in reading about experiences of those women who have done it....

    i am always surprised that folks on here do not make use of the "advanced search" option available....not referring to all people...but am surprised that more do not notice how to go about searching for previous posts on topics they are interested in on this forum

    jess

  15. #30
    Join Date
    Sep 2003
    Location
    NJ
    Posts
    1,291

    Smile Pain free me.

    Quote Originally Posted by Singer View Post
    The issue of pain is so interesting because it's so subjective. I don't know how anyone who had the hugely invasive anterior-release procedure (in which you're basically sliced all the way open from the side) can be totally pain-free. stabilized spine and a terrific cosmetic result.
    I am totally pain free and had the hugely invasive A-p revision. The cosmetic result was greatly improved but my rib hump was so pointed from the 100deg curve as a teen that the thoracoplasty could not remove it totally without disturbing important nerves. My shoulders and hips are even just the right shoulder blade is still out some.
    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

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