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Thread: New & looking for advice

  1. #1
    Join Date
    Mar 2009
    Posts
    5

    New & looking for advice

    I'm new here. I've been a member for a while but haven't posted. My scoliosis was identified in 1992 when I was 13 years old. In Jan 1993 I had my first spinal fusion and Harrington rods were put in place. The surgery was considered a success at the time. Unfortunately I kept growing

    In 1995 I was having severe back pain so they investigated and ended up choosing to do exploratory surgery. In Jan 1996 (3 years almost to the day after my first surgery) they opened me up. They found that the tissue surrounding my rods was massively infected (they were actually concerned at the time that it was cancerous). They made the decision to remove the rods. When I awoke I had no rods but my curves were back to what they were when they were initially identified in 1992.

    I was young when all this happened so I didn't really know what the numbers and figures meant. Even now I have limited information my scoliosis. What I know is listed below

    1) thoracic scoliosis convex to the right centred on T9
    2) Harrington rods (when in place) extended from T6 to T12
    3) mild S thoracolumbar scoliosis with a thoracic concavity to the left of about 37 degrees and lumbar concavity to the right of about 25 degrees (this makes no sense to me - just copied from my medical records)
    4) SLW T7 - T11 (again I have no idea what this means)

    Separate (although connected) to my surgeries, I had an injury in March. An MRI showed that I have a herniated disc at L4/L5 and a prolapsed disc at L5/S1. This is gradually improving.

    The reason that I've been prompted to write rather than just read is because I am now 3 months pregnant. My belly appears to have popped already (not sure if that is scoliosis related - I'm slim but not skinny) and I'm anxious about what my scoliosis will mean for pregnancy and birth. I recall being told in 1992 when I was 13 that I would be in a wheelchair by the time I was 25 and never be able to have children. From reading all your posts and other bits and pieces on the internet I think this was overly melodramatic.

    I also wonder whether I needed surgery in the first place - but that's a whole different matter.

    Thanks to everyone for their support on this!

  2. #2
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,794
    Hi Tred...

    I can't imagine what the SLW means. The only S's I know in terms of measuring scoliosis films are sacral and sagittal. Let me know if you ever figure it out.

    The rest is pretty standard. You have a moderate S curve. If your curves were this small when you had your surgery, you almost certainly didn't need the surgery. Who performed that surgery?

    In terms of your pregnancy, you may find that you have more back pain than usual, but the scoliosis shouldn't really get in the way. The one thing that you should be aware of, is that you may have trouble getting an epidural. If that's something you want to pursue, you should mention it to your OB, and see if you can get an appointment set up with someone in the anesthesiology department of the hospital where you'll deliver.

    Good luc with your pregnancy!

    Regards,
    Linda

  3. #3
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    3,531

    sublaminar wires

    http://www.spineuniverse.com/display...ticle2953.html

    Hi Tred

    Welcome to the forum. They must have used wires.

    Good luck
    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

  4. #4
    Join Date
    May 2009
    Location
    Adelaide, Australia
    Posts
    424
    Hi Tred,
    welcome to the forum. So sorry to read about your past surgery, I must admit though, that i can't imagine why they would have done surgery on such mild curves. Were you any pain? I can't answer in regards to your pregnancy, but, i'll let you know that, before my surgery, I looked as if I was three months pregnant. Like you i don't know if this is scoli related, but i never had a pot belly before. Now after the surgery, its reducing slowly as i also had anterior as well as posterior work done. I have a sort of caesarian scar.
    Last edited by Vali; 09-17-2009 at 09:05 AM. Reason: typo
    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
    Mar 2009
    Posts
    5
    Thanks for the feedback everyone. I live in China and until today my internet was completely blocked so I couldn't get back on and see responses or reply!

    I had both of my surgeries as a teenager in Australia. The first was performed by Dr John Tuffley, the second by Dr McPhee. It's only as an adult I've requested my files and discovered that perhaps surgery wasn't the only option. I remember being told as a kid that even with the surgery that I would be in a wheelchair by the time I was 25 and that I would never be able to have kids.

    In hindsight I think a lot of that was my mother. She has Munchausen's by proxy.. so that explains a lot.

    My back is beginning to ache a lot now. I'm 16 weeks along so not quite halfway. I am going to my physio next week to see if she has any suggestions. It's going to be a long 24 weeks! The OB seems to think I can have an epidural but it would be quite low.. probably around L3. I'm not keen, I'm scared to have anyone go near my back anymore!

  6. #6
    Join Date
    Apr 2007
    Location
    Sydney
    Posts
    249
    Quote Originally Posted by tred79 View Post
    Thanks for the feedback everyone. I live in China and until today my internet was completely blocked so I couldn't get back on and see responses or reply!

    I had both of my surgeries as a teenager in Australia. The first was performed by Dr John Tuffley, the second by Dr McPhee. It's only as an adult I've requested my files and discovered that perhaps surgery wasn't the only option. I remember being told as a kid that even with the surgery that I would be in a wheelchair by the time I was 25 and that I would never be able to have kids.

    In hindsight I think a lot of that was my mother. She has Munchausen's by proxy.. so that explains a lot.

    My back is beginning to ache a lot now. I'm 16 weeks along so not quite halfway. I am going to my physio next week to see if she has any suggestions. It's going to be a long 24 weeks! The OB seems to think I can have an epidural but it would be quite low.. probably around L3. I'm not keen, I'm scared to have anyone go near my back anymore!
    I do hope you get some relief of your pain tred. I was thinking you should come back to Australia and see another scoliosis specialist, but now days you probably have many more in your country. Let us know how it all goes for you

  7. #7
    Join Date
    May 2009
    Posts
    3,745
    Hi Tred
    welcome! so sorry for all you have been through with your back!

    i have upper curve of 40 degrees & lower of 61 degrees...it is the lumbar curve that causes all my pain...have had epidurals, facet blocks, nerve ablation & latest was sacroiliac injections...none worked..the sacroiliac injections seemed to help...great relief at first, but it is fading now, & the pain is coming back..of course, i never have had surgery...yet...so i cant tell you how the pain would be for you...for me, all the injections hurt, but were tolerable if relief was coming...this latest sacroiliac thing is very very disappointing, as it helped so much the first few weeks!

    i hope you find a solution to all your suffering...maybe you could just have a consult with pain management...or maybe come to nyc to consult with surgeons...??

    jess

  8. #8
    Join Date
    May 2009
    Posts
    3,745
    Tred...the epidural one has for scoli is not like the ones they give for labor & delivery...it doesnt numb you from waist down or anything, just supposed to alleviate the pain...mine didnt work, but everyone is different...tho i havent heard of it working for anyone for more than 2 months...

    i am so sorry you are going into your pregnancy with these worries...i know you wont be having any surgery done now...i just wonder if after the baby you will have any time to spend with surgeons or even consider surgery...

    i hope there is some solution for your pain...

    best of luck
    jess

  9. #9
    Join Date
    Jun 2006
    Location
    Euharlee, Georgia
    Posts
    449
    I was fused T12 - L5 so I could not have an epidural when I went into labor with both of my daughters. I had back labor with my first daughter and did not feel anything! It was great. The only problem I had were both of my kids were big (almost 9 pounds) and both got stuck because of the tilt of my pelvic bone and I had c-sections. My daughter is fused T7 -L3 and her doctor told her she would be able to have an epidural. She says she doesn't want anyone jabbing a needle in her back. I had very few back problems carrying my kids. When I had any pain, I used the heating pad.

    Jess - I have had nerve ablations also. They lasted 8 months the first time and 1 1/2 years the second time. I am having a section done for the third time next month. I was told now by two doctors, that the nerves can keep growing back until they get enough scar tissue on them.
    T12- L5 fusion 1975 - Rochester, NY
    2002 removal of bottom of rod and extra fusion
    3/1/11 C5-C6 disc replacement
    Daughter - T7 - L3 fusion 2004

  10. #10
    Join Date
    Mar 2009
    Posts
    5
    Quote Originally Posted by Jimbo View Post
    I do hope you get some relief of your pain tred. I was thinking you should come back to Australia and see another scoliosis specialist, but now days you probably have many more in your country. Let us know how it all goes for you
    Australia is my home country. I've lived in China for almost three years now for work. The health system we use here is good but similar to the American system so a lot of what is covered for free in Oz I have to pay for here.

    My back pain seems to be more related to my disc injuries at L4/L5 and L5/S1 than my scoliosis. The OB said I could have an epidural at L3 but I'm not going to let anyone near my back.

    Just found out that I'm high risk for pre-eclampsia.. so a difficult pregnancy this is turning out to be. I'm just happy to feel the baby move and see my body growing. Another few months of pain will be manageable for the payoff.

  11. #11
    Join Date
    Jul 2009
    Posts
    114
    I have had three children...the last one I was 36 years old. I'm not sure of my curve measurements when I had them, but my lumbar was somewhere between 23 and 63 degress, since that was my progression from a teen to now. All of my epidurals worked just fine. I was told that they may only work on one side, but that wasn't the case for me. The anesthesiologist always recognized my curve right away as soon as they saw my back!

    Good luck...you'll do great!
    Kathy, 43
    Diagnosed as a teen
    Boston brace 2 years
    63 degree lumbar curve
    Surgery August 26, 2009
    Anterior approach fused T12-L4
    now 28 degrees

  12. #12
    Join Date
    May 2008
    Posts
    169
    It is a pity you cant come back here to be looked at again. I am also wondering if your curve has progressed at all. You were certainly told the wrong thing when you were younger and that is such sad really for you to carry that worry.

    I do hope everything goes ok for you, just take things very, very, easy and I really wish you all the best.

    Lorraine.
    Operated on in 1966, harrington rods inserted from T4 to L3, here in Australia. Fusion of the said vertebrae as well. Problems for the last 14 years with pain.
    Something I feel deeply,"Life is like money,you can spend it anyway you wish, but can only spend it once.

  13. #13
    Join Date
    Mar 2009
    Posts
    5
    Well I'm almost there now. 38 weeks and waiting for bubs to arrive. Couldn't have asked for a better back during pregnancy - aside from some occasional aches and pains my back has been perfect. Hoping it'll hold up to labour and delivery now - time will tell.

    I think I'm going to get a full re-assessment of my spinal health done after bubs comes. I have so many unanswered questions from years of misdiagnosis and misdirection. Hopefully having some clearer answers will help me in the years to come. Thanks to everyone for their thoughts and advice.

  14. #14
    Join Date
    Mar 2010
    Location
    Ottawa, Canada
    Posts
    21

    revision and decision making (long)

    I am new this time around but used to lurk mostly on the old list serve site years ago.

    First dx with adolescent idiopathic sc (AIS) in the '60s and had the first surgery at 14. It was only a fusion since Harrington and his technique was new. The surgery was uneventful but very difficult for my mother and for me - 1st year of high school no support from the school - so I did my schooling by correspondence without missing the year. The pre-post surgery were archaic by today's standards - pre casting (dreadful arrangement from my head to mid thigh on the right side) and straightened by a turn-buckle inserted into the cast via a wedge cut, surgery and then bed bound for 4 months. Then smaller cast until school started and wore a fibre cast brace for the year.

    After 2 children the first fusion continued to curve and surgery #2 (1981)- this time 2 Harrington rods. The doc was very good and attentive but there was only so much that medicine could accomplish or know at the time.

    I have always focussed on the cosmetic effect of scoliosis and watched over time as the kyphosis, rotational and flatback effects became more noticeable. The doctor who took over the practice of the Harrington rod doc, was not interested in the effects of Harrington and only said my rods and the fusion were solid. He would not discuss the loss of correction or any of the other iatrogenic effects associated Harrington rods.

    After commenting to my GP that I really wanted a more thorough checkup on my back I was given an appt with a specialist who I have learned studied with Lenke and Bridwell. My dilemma now is should I consent to another revision?

    I know I have deterioration in the lumber area and increased stiffness and some discomfort. I also have sagittal/coronal mis-alignment. I have read much of the literature without gaining any confidence, recognizing the complications and remaining unsure.

    I go on the 19 April to discuss with the doc and probably make a decision one way or the other. I am 64, no co morbidity and reasonably healthy, work full time. Basically I don't want to lose what I have now for something that might be impossible to resolve in the long run. I also worry that I might miss an opportunity to make a difference overall if I don't choose surgery....

  15. #15
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,794
    Hi Elizabeth...

    Welcome aboard.

    You're really the only one who can know whether revision surgery is right or wrong for you. I can tell you that many of the people I know who are unhappy with their outcomes, are those who have the surgery mostly for cosmetic reasons.

    Best of luck with your decision.

    Regards,
    Linda

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