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Thread: I am new to this forum and need your help.

  1. #1
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    Question I am new to this forum and need your help.

    I am 51 y/o female with a cobb angle of 30 degrees in my lumbar region, i have dextroscoliosis from T11 to my sacrum. I have spinal stenosis now and severe narrowing of L1, L2, L3, L4 neural foramina. Severe arthritis of my spine and spondylolisthesis of L2-L3.

    I had adolescent scoliosis which progressed in my twenties with pregnancy and held throughout my career in the Army with all the running for a decade. I had pain, usually 4-5/10. But kept on going.

    The past three years my pain has progressed to 8-9/10 and even 10/10 for brief periods. I am sure my weight does not help...I am 50 pounds over weight. I cannot tolerate pain meds or NSAIDS. I do Bikrim Yoga one to three days a week and this helps....often the pain is worse for a few hours then better for a few days. I think I eat to help with the pain....ugh...

    My surgeon says I now have a vertebral body slipping laterally, spondylolistheses....and recommends surgery. TLIF and XLIF from T10 to my sacrum. ...rods and fusion, anterior and posterior approach with two different surgeries spaced one day apart. I would remain in the intensive care for a week or so and require blood transfusions.

    I am frightened....but in so much pain I don't know what to do.

    Please tell me your thoughts.

    Should I have the surgery or wait?

  2. #2
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    Quote Originally Posted by Cerulean58 View Post
    Should I have the surgery or wait?
    Do you mean wait for less invasive techniques or non-fusion techniques?

    It blows me away that you have so many related spinal pathologies associated with a 30* curve. We have another person on this board who seems to have a bunch of problems in a sub-surgical curve also. I wonder how many people with sub-surgical Cobb angles end up in surgery anyway due to extreme deterioration even with smaller curves. Folks will be told they are out of the woods on progression and hope to make it to maturity under the magic angle as you were but does that matter if you are deep in the woods with all these other issues?

    I think if someone looks at this it may turn out to be the case that fusing at lower curve angles will be done. And I'd like to know if fusing earlier means fusing less vertebrae for the average AIS case. Maybe if my kids were fused at ~30* instead of almost 60* they would have far fewer fused vertebra. Or maybe the spine will curve how it will despite earlier fusion. Who knows.

    Sorry for the rant.

    It's like with scoliosis you just can't win.

    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."

  3. #3
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    Hi. There are many people on this forum who are thrilled that they are pain free after surgery, can lead normal lives and are active with little inconvenience. Check out the posts by Titaniumed and others. I believe he is in his early fifties.

    I am 57 and am having surgery in June for a 90 degree curve. Personally, I wouldn't want to undergo two separate procedures. Anterior/posterior surgery was also recommended to me and it really scared me. My surgeon in New York does the "anterior" part with a side minimally invasive procedure which minimizes blood loss and make for an easier recovery. I am on my stomach the whole time. The posterior part is traditional. I would check out some other surgeons who are highly recommended and who specialize in adult scoliosis, since there are a variety of approaches. All the best, Joy

  4. #4
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    For people who have both scoliosis and spondylolisthesis, the curve measurement isn't as important when making the surgery decision. Do you know what grade the spondy is? A lot of the patients we see have both degenerative scoliosis and spondylolisthesis, and the curve measurement is rarely even noted in the surgeon's notes.

    --Linda

  5. #5
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    Hi Linda,

    Just wondering, in the patients you mentioned with degenerative scoli and spondy, do the surgeons usually try to straighten the curve during surgery, or do they just fuse in place?

    I ask because my back sounds similar to Cerulean's, except I am 42, and my spinal stenosis is mild L1-L3 and moderate/severe at L4/L5, with grade 2 spondy at L4 and L5. I had fusion as a teen for the spondy, but it did not heal correctly and did not fuse at all at L4. My lumbar curve was just under 40 last year. I saw a very well-reputed surgeon at OHSU who told me he probably would just fuse the curve in place. I didn't get a chance to ask the reason for this. The emphasis would be on stabilizing the spondy and treating the stenosis. It would be kind of nice to have the curve straightened somewhat (I'd be happy with 25-30). I'm thinking of having surgery within the next year, as my symptoms are getting worse.

    Cerulean,

    I would encourage you to seek another opinion, but it really sounds like surgery is your only option with such severe symptoms. Waiting will serve no purpose, will delay your relief, and may make the surgery more complicated. Good luck, and please do let us know how you are doing.
    Last edited by leahdragonfly; 03-24-2010 at 10:58 PM.
    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

  6. #6
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    I know what your talking about. The 9-10 level pain, does have substantial weight in the decision making process.

    I was almost headed down to San Fran, and finally my surgeon decided to work on me after many visits. I was in great shape from skiing 46 years, was a little heavy, and he made me lose weight. Surgeons donít like cutting through fat. He thought about my surgery for a long time.

    You have a right to be frightened, so was I . I had a whole host of lovely issues..... My surgery was a heavy duty and well, I made it through with flying colors.

    Usually when things are bad down low, surgeons like to go in from the front. If you look at a spine, you will see that they have great access from the front, and get great results with fusion. They used BMP on me with multiple corpectomys. A minimally invasive procedure would not have worked on me. Sometimes surgeons like to have the room.

    Anyway, since you are new to the forum, Id like to say welcome. Ask any questions you like, there are great people here.

    Where do you think you will have your surgery? How many surgeons have you seen?
    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

  7. #7
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    Cerulean58,I had surgery in Aug.2009.My surgeon Dr.Pashman has my case on his website if you want to read about my case.www.eSpine.com
    Example #35:
    43 year old female with Adult Idiopathic Scoliosis and a lumbar sacral transitional vertebra. The patient was treated with a posterior spinal fusion from T10-Pelvis. Review her case.............I am doing really well and I am glad I had the surgery.
    Sheri
    Aug.17,09 Anterior
    Aug.20,09 Posterior
    Fused T-10 to Sacral Pelvis
    Cedars-Sinai
    Dr.Pashman

    Sheri 47 years young
    Husband married 30 years
    3 kids 29,28,25
    4 grandkids 10,8,5,3

  8. #8
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    Quote Originally Posted by leahdragonfly View Post
    Hi Linda,

    Just wondering, in the patients you mentioned with degenerative scoli and spondy, do the surgeons usually try to straighten the curve during surgery, or do they just fuse in place?

    I ask because my back sounds similar to Cerulean's, except I am 42, and my spinal stenosis is mild L1-L3 and moderate/severe at L4/L5, with grade 2 spondy at L4 and L5. I had fusion as a teen for the spondy, but it did not heal correctly and did not fuse at all at L4. My lumbar curve was just under 40 last year. I saw a very well-reputed surgeon at OHSU who told me he probably would just fuse the curve in place. I didn't get a chance to ask the reason for this. The emphasis would be on stabilizing the spondy and treating the stenosis. It would be kind of nice to have the curve straightened somewhat (I'd be happy with 25-30). I'm thinking of having surgery within the next year, as my symptoms are getting worse.
    Hi Leah...

    They correct the curves sometimes. I'll try to remember to ask one of the surgeons about it. I suspect they do it in younger people. I'm guessing that the correction is rarely much more work than just fixing the spondy.

    --Linda

  9. #9
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    Quote Originally Posted by Pooka1 View Post


    It's like with scoliosis you just can't win.
    Sharon,
    Did you know that Usain Bolt is a scoli? The fastest man on the planet.

    http://news.bbc.co.uk/sport2/hi/athletics/8049584.stm

    Oh BTW, love your sig!
    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

  10. #10
    Join Date
    May 2009
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    Hi Cerulean 58
    welcome to the forum...many good people here...offering many personal experiences...and sharing much knowledge!
    i will ask what Titaniumed asked...have you seen several surgeons for opinions...do you know where you'd have the surgery...?
    also...when you say you cant take pain meds...do you mean any pain meds...are you allergic to them? i personally couldnt get by...couldnt walk at all...without them! even with them, i had to early retire 3 years ago due to severe pain!
    i hope this forum adds to your knowledge and helps you to make informed decisions!

    Sherri
    great looking results...your back looks amazing...i looked carefully... i need fusion T11-S1 and L4-sacrum...or the other way around... i just know it would look a little bit like your results...if they did a great job, that is...!!
    Dr Anand told me he would fuse the same levels but wouldnt need to go to the pelvis. all the other surgeons i saw said they would do "pelvic fixation"(Boachie, Lonner, Neuwirth, and McCance and a couple of others i cant even remember any more (some didnt make a great impression )
    i read the stuff at Pashman's website that you linked to...very interesting and impressive! thanks for posting the pix and info!

    jess

  11. #11
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    Quote Originally Posted by titaniumed View Post
    Sharon,
    Did you know that Usain Bolt is a scoli? The fastest man on the planet.

    http://news.bbc.co.uk/sport2/hi/athletics/8049584.stm

    Oh BTW, love your sig!
    Ed
    Well I guess Bolt can win with scoliosis. Sounds like he has lumbar.

    He goes to Germany to see an expert and does exercises three times a week. One could venture a guess as to who he sees and which PT.

    In re my sig, I take my inspiration from many places.
    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."

  12. #12
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    Mar 2010
    Location
    San Francisco
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    Smile Thank you for your questions...you have me thinking now

    I do not know the grade of my spondylolisthesis and will find out ASAP.

    I am seeing a surgeon at the spine clinic at UCSF. His name is Mummanneni MD.

    I have not had a second opinion...but have had three other physicians at the spine center look at my films and agree that I need a T10- sacrum Tlif and Alif from L1-L4.

    I will go to another hospital for a second opinion. Can any recommend a place? I hear a great deal about Lenke MD in St. Louis, and Schaffrey (sp?) in Virginnia. Has anyone seen these docs?

    I read about all your curves and feel like I must not be in as bad a condition as you all are. Perhaps I do not need surgery...but need to take better care of my self, loose weight and try that German exercise technique? Please let me know your thoughts.

    Thank you all. You are an inspiration to me.

  13. #13
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    Pain meds

    I do not take pain meds....narcotics as they make me high....I get high off coffee and I cannot think. I am very sensitive. Because of my profession I cannot be impaired at all.

    NSAIDS cause me to get bleeding ulcers and gastritis.

    So I meditate.

  14. #14
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    Sharon...

    I asked Dr. Berven about fusing a scoliosis curve as part of a spondylolisthesis surgery. He stated that he would only fuse the scoliosis curves if they were causing pain.

    Cerulean58...

    I work in the spine clinic at UCSF, although for the Orthopaedics department. Dr. Mummaneni is a neurosurgeon. (Although we share a clinic, there is no cross-over of employees except in the reception area.) I'm usually not in clinic on the days he is, so I don't get to see his patients very often.

    I think you may have misunderstood about intensive care. I don't know about neurosurgery, but in orthopaedics, it would be very unusual for someone having the surgery you're having, to end up in the ICU at all unless there was a complication.

    I don't think you need to go out of town for another opinion. At least I wouldn't.

    Regards,
    Linda

  15. #15
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    Quote Originally Posted by LindaRacine View Post
    I think you may have misunderstood about intensive care. I don't know about neurosurgery, but in orthopaedics, it would be very unusual for someone having the surgery you're having, to end up in the ICU at all unless there was a complication.

    Hi Linda, just a tangent - it was interesting to read this. Here in the UK it's standard procedure for people having spinal fusion surgeries to spend the first night post-op in ICU or HDU. I've never heard of someone staying in ITU for a week though.

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