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Thread: greetings; i'm new here. impending surgery slated for may 20. i need support.

  1. #1
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    Red face greetings; i'm new here. impending surgery slated for may 20. i need support.

    greetings friends,

    i'm a guy and i'm twenty years old. height is 5'10" and weight is 125 lbs. i'm having a posterior spinal fusion next thursday, and being a very type-a person and somewhat of a perfectionist, i've been questioning myself at every step in this process. i really want to make sure i'm doing everything right and not digging myself into a deeper hole with this scoliosis thing.

    now, a brief medical history: i've been asymmetrical-looking for as long as i can remember, but never made the connection to scoliosis or attributed it to a serious abnormality in any way. my parents never noticed because i was always pretty self-conscious about it and made every attempt to cover myself adequately.

    i was officially diagnosed last july at a regular checkup with my general practitioner after i complained to her of some back pain. x-rays confirmed two curves, a forty degree lumbar curve and a thirty-eight degree thoracic. it was described as 'levoscoliosis with severe rotation.' apparently the rotation is disproportionately severe given the cobb angles, resulting in a more visible deformity (yay for me). the curves have both progressed by approximately two degrees each in the past nine months.

    so, the first specialist i saw (this was last august) put me through a bunch of unnecessary radiation and diagnostic testing. i felt as though i was being strung along, and i didn't like it. tests would be done, then i'd wait, then more tests, then more waiting. then he said there was nothing he could do. after all that. it was already march 2010, and nothing had been done. i actually took a year off school (i was going to college out-of-state) to get this whole back thing sorted out. it was already march, and i wasn't about to take another year off for this.

    anyway, i finally sought a second opinion from a dr. james w. simmons at the south texas spinal clinic. in order that i might make it back to school by the fall, my surgery was scheduled for the soonest possible date. i just found out last week that my surgery is going to be may 20.

    okay. so i am actually fine with the idea of surgery. i've been having bad back pain for a while, and it's only gotten worse. the pain lies mainly in the convexities of the curve, and has gotten worse as the curves have progressed, which is proof enough to me and my doctor that this is scoliosis-related back pain. i ran through the whole protocol: i tried physical therapy, chiropractic, electric stimulation, deep tissue massage, yoga, acupuncture, inversion therapy, and otc pain management. i've determined surgery to be the only viable option at this point, as a last resort, of course. i was not open to the idea of prescription pain management without surgery because i am strongly opposed to slapping a band-aid on this problem, instead of addressing the structural deformity, and i would likely need the pain pills for the rest of my life anyway, which would suck. at least with surgery, there is a chance i won't have to be on pain pills, or at least not as high a dose. a chance i'm willing to take at this point.

    someone out there must be experiencing similar pain to mine. can anybody identify? it feels like a stinging sensation; it starts rather dull but becomes increasingly sharp as it gets worse. soon it spreads from the convexities of the curve to most of my back. my back actually feels numb to the touch and is very warm when this happens. the pain is triggered most by standing still. walking is a little better. sitting is too. laying flat on my stomach is best because it takes the whole load off.

    another question: while i am posting this in the adult forum because i am twenty years old, my bone age (tested for a totally different medical problem unrelated to scoliosis) was determined to be seventeen. i'd always wondered why i looked younger than my peers. my body thinks i'm seventeen. anyway, do you think this will play out to my advantage for the surgery? will i get a better result given that i am still sort of an adolescent? i would think that i'd get a better result because my spine is tad more flexible and not fully mature yet. the bad part about having a younger bone age and slow growth, of course, is that there would be more opportunity for curve progression. how good a job does surgery do at arresting that progression?

    also, does posture generally improve after surgery? it's weird because i think i'm standing up straight; then i look in a mirror from the side and see how hunched over i look. could this be scoliosis related? i know i don't have kyphosis or anything like that. it just looks like my neck is arched forward too much. the over-prominence of the shoulder blade and the rib hump certainly don't help my postural appearance either. i try to push my neck back and kind of puff my chest out a little in a vain attempt to look like i have normal posture, but somehow, that actually HURTS my back, esp. between the shoulder blades and down in the lumbar area. i don't feel i should be punished with pain when i try to stand up straight like a normal person. haha. i definately had much better looking posture as a kid; it kind of got worse when the curve, unbeknownst to me, was progressing throughout my childhood and adolescence.

    finally, from your knowledge or personal experience, how much does a leg length discrepancy factor into your recovery and does it impact the success of the fusion? my left leg is structurally 7.5 mm shorter than the right (most of this difference being in the tibia), which i've heard is not actually too severe a leg length discrepancy. but clearly spinal fusion in itself cannot correct a tilted sacral plane, right? is it possible that after surgery when my spine is straighter, my left leg will grow to compensate for the new equilibrium?

    finally, i did my pre-op testing earlier today, but didn't have to do a blood gas test. also, i wasn't asked to donate my own blood. should i be worried about this? the doctor never mentioned anything.

    oh, and if you were treated by dr. james w. simmons, please offer your feedback on your care! i think i trust this guy's expertise, but some extra reassurance would really calm my fears TREMENDOUSLY.

    thanks for listening to my long and winded nervous babble. and thanks in advance for your help and support. it means a lot.

    i probably have more questions but i can't remember them at this time. haha.

  2. #2
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    Sacket,
    I can certainly relate to the PAIN aspect of scoliosis. I've had pain since I was 8 years old and never mentioned it because I thought it was growing pain and would just stretch it out in the mornings. When I was about 12 years old, the pain became pretty bad in my neck and upper back. I would complain and say my spine felt like it wasn't in the middle. The response from my mom was of course it's in the middle where else would it be? Go take some aspirin. At age 16 the pain became so bad that it was completely immobilizing. After suffering through the weekend, my mom finally took me to a chiropractor and I was diagnosed with a 39* upper thoracic curve. She felt REALLY bad because she didn't believe me all those years. I hated to see my mom cry so much! My curve was not braceable. She took my to Children's Hospital and put me through every kind of therapy there was. I was tested, poked, exercised, electrocuted , you name it. Anyway, I always continued to have pain and have always been told that "scoliosis doesn't hurt." I finally found a doctor from the Scoliosis Research Society that said I had a typical pain pattern for scoliosis and he would do surgery for pain reasons. Since my curve was stable, even though I had to use narcotics at times, I didn't want the surgery because I was only 40* and not mentally prepared AT ALL. He said to come back in 3 to 5 years for a recheck, since my curve was stable and he felt it would never progress. Well low and behold when I went back to him in March of this year, I HAD progressed 6*. I was in OBVIOUS pain in my lower spine which turned out to be a different condition unrelated to the scoliosis. He didn't wan't to do surgery, just have me come back in 12 to 18 months. BUT, he told me if my upper back or neck pain increased to come back whether it was a week or a month, he wanted to see me again. Well it got so bad that I am now on HEAVY narcotics (don't even want to mention what) and he tells me my pain is not even scoliosis related and he couldn't help me. He said surgery would only make it worse, and besides I wasn't even progressing. I corrected him and he says, "Oh, yeah. I guess you are." But the guy left me litterally sitting there in the office crying. I asked him where I could go for help, that I didn't want to be on all these drugs. He just asked if I had a General Practitioner, and I said yes, and he sent me to you, and so did my neurosurgeon. He said he wished he could help me and that if my curve was 60* he would.

    I guess the point of my story is that you are a very fortunate young man to have found a surgeon to believe you, because NONE have believed me, even though my symptoms have been consistent for years. I can't relate to the numbness in the spine, but my bones actually ache. I get terrible neck pain because of how high up my curve is. My doctor (THE ONE) actually told me he was surprised that I could hold my head up straight! I get very severe muscle spasms in my neck and under my shoulder blades. I get sharp pain in my sternum and cramping in my intercostals (between the ribs). I have had it feel like a burning sensation across my whole upper back at times. I get my left arm that goes numb and pain that runs down the arm all the way to my fingertips. Pain down my right arm only goes about half-way to my elbow when it happens. I feel so happy for you that you get to have the surgery. I am FORCED to be on the meds because it is the only thing my GP can do when the scoli doc won't operate, otherwise I'm totally incapacitated. I think your young bone age is a plus. Younger spines move easier. That's why they will do pediatric corrections at my local hospital but not adult. I would ask about the blood if you are concerned. I've heard people having large amounts of transfusion to no transfusion since I've been reading the forum. I hope my experience has helped you. I am 41 and still fighting to find someone who will help me.
    Best Wishes!

  3. #3
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    Is this your doctor?

    James W. Simmons, III, DO
    South Texas Spinal Clinic
    18626 Hardy Oak Blvd., #300
    San Antonio, TX 78258
    Phone: (210) 495-9047
    Fax: (210) 495-9310

    Specialties: Adolescent, Adult Scoliosis, Aging Spine, Degenerative Conditions, Juvenile/Infantile

    If so,I found him on the SRS (Scoliosis Research Society) website and I would say you were in good hands.

  4. #4
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    Hi sacket
    welcome to the forum...there are many wonderful people on here, with stories to share and help to offer...

    i would suggest a search for the threads of JDM555...he is young, college age i believe, and had the surgery already...maybe you could ask him some of your questions through a private message and get some answers from what he has already experienced...

    i have a 42 thoracic and a 61 lumbar...but have not had surgery..yet..though am now considering minimally invasive approach, as it spares muscles somewhat and causes less blood loss...it is the idea that i could still be in pain after healing was complete that has put me in limbo...
    plus the fact that i need fusion from T11 to the pelvis...i dont remember you stating where your fusion will be ...?
    best of luck...

    jess

  5. #5
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    Good suggestion Jess, for Sacket to get in touch with John.

    Welcome Sacket, but sorry that you need to be here. As Jess said, there are lots of knowledgable and experienced people here who can answer at least some of your questions.

    For myself, I also had levoscoliosis with severe rotation. I didn't have surgery until almost 58 so you're going to be miles in front of me. I had a 68 degree curve, now 22, rib hump has gone and I no longer have pain.

    It sounds like you've tried various therapies and are ready for surgery. I think, because of your age, whether your body thinks it's 17 or 20, you will do just fine. Young people recover more easily than older people, as would be expected.

    I can't answer your other questions, but I am sure someone will come along with the right experience or knowledge and give you some answers. Just want to wish you luck for your surgery and I hope you'll let us know how you're doing when you're able.
    Surgery March 3, 2009 at almost 58, now 63.
    Dr. Askin, Brisbane, Australia
    T4-Pelvis, Posterior only
    Osteotomies and Laminectomies
    Was 68 degrees, now 22 and pain free

  6. #6
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    Welcome Sacket,

    I agree. John has done well.. and will continue to do well into the future. He is a similar case. PM him.

    Do you know what levels will be fused?
    Ed
    titaniumed@hotmail.com
    49 yr old male, now 61, the new 61...
    Pre surgery curves 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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    Hi Sackett -- I'm not post-op yet, but I will tell you, there is a tremendous amount of support on this forum. You've come to the right place. Wishing you all the best for your surgery on the 20th.

    Glenda
    Glenda
    Age 66 Georgia (63 at time of surgery)
    Bi-lateral laminectomy 2006
    Kyphoscoliosis, approx 38* lumbar scoliosis, stenosis, disk herniations, lower back and hip pain, w/radiating pain, stinging and numbness in legs.
    A/P fusion (T10-S2) 5/17/10 and 5/20/10
    Dr Yoon, Emory Orthopaedic and Spine Hospital, Atlanta, GA
    Pleased with outcome

  8. #8
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    i appreciate the wonderful outpouring of support and warm wishes.

    Quote Originally Posted by rohrer01 View Post
    Is this your doctor?

    James W. Simmons, III, DO
    South Texas Spinal Clinic
    18626 Hardy Oak Blvd., #300
    San Antonio, TX 78258
    Phone: (210) 495-9047
    Fax: (210) 495-9310

    Specialties: Adolescent, Adult Scoliosis, Aging Spine, Degenerative Conditions, Juvenile/Infantile

    If so,I found him on the SRS (Scoliosis Research Society) website and I would say you were in good hands.
    yep, that's him. i find that very reassuring.

    Do you know what levels will be fused?
    i dont remember you stating where your fusion will be ...?
    i actually don't know. my last pre-op appointment is this upcoming monday; i have that on my list of questions. he may have told me last time, but like a dummy i didn't think to write it down.

    any other important questions you think i should ask? (i.e., are there any questions you wish you'd asked, in hindsight of your whole surgery experience?) this time, i'm coming prepared with a list. haha.

    would suggest a search for the threads of JDM555...he is young, college age i believe, and had the surgery already...maybe you could ask him some of your questions through a private message and get some answers from what he has already experienced...
    i will do that!

    can certainly relate to the PAIN aspect of scoliosis.
    rohrer01, so glad i have someone with whom to relate! in fact, dr. simmons is the first orthopedic surgeon i've seen that has acknowledged that my pain is attributable to scoliosis. my previous orthopedic surgeon insisted that scoliosis isn't associated with pain. when he told me this, he also insinuated that because he couldn't find proof of the pain, that i wasn't in real pain and i was simply somatizing it or even making it up. i took much offense to that, and looking back on it, that should have been my cue to leave his office right that moment.

    even though i am only twenty years old, it would be nice to be taken seriously. dr. simmons actually listens, and that is a welcome relief.

    The response from my mom was of course it's in the middle where else would it be? Go take some aspirin.
    oh my, i've gotten that exact same response many times throughout my childhood! would you believe it?! in response to my asking why one side of my hips seemed to jut out more, she told me "it's because your so skinny." that never sat well with me because i've seen many skinny people and they don't look like that. haha. but i don't blame her, really. the last thing we need to do before surgery is harbor resentment toward our parents, haha, right?

    guess the point of my story is that you are a very fortunate young man to have found a surgeon to believe you, because NONE have believed me, even though my symptoms have been consistent for years.
    your story sounds nightmarish and is really touching; i feel your pain (literally), and if your pain is anything like mine (and yours sounds like it's much worse), i can only hope that you find a surgeon who will take you seriously. are you still looking for one?

    my pain has been increasing more rapidly over the past couple years to the point that i can only stand for about ten to fifteen minutes at a time before i need to sit or lay down and rest. i know the numbness part sounds weird. the stinging pain is deep in my back; i can feel it, but the surface of my skin is numb and warm to the touch. unusual, i know. but i'm certainly not imagining this; that's for sure.

    my doctor, luckily (and i mean really luckily) understands my position, that is, that i'd rather go through surgery and have to end up on pain pills than to just go on pain pills now without surgery for an indefinate amount of time. i believe this because first of all, at least after surgery i'll know i did EVERYTHING i could do to try and fix this deformity before resorting to pain medication. secondly, because the chances are in my favor that after surgery and recovery i can put off being on long-term pain medicine for a while, or hopefully decrease the dosage i'd need to take compared to not having surgery. of course, there is always the chance i'll be in MORE pain after surgery/recovery, which would of course suck, but i've researched this and apparently the chances of a negative outcome are outweighed by that of a positive outcome, which is reassuring. it's a chance i'm willing to take, in other words.

    sorry for the rant.

    finally, regarding some still unanswered questions, can anybody here attest to having improved posture after surgery? does fusion make it impossible to slouch, even if you wanted to? also, anybody have a leg length discrepancy, and if so, how did you deal with that after the spine surgery?

  9. #9
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    Thumbs down

    Fusion does make it difficult to slouch, though I suppose it depends how high up your fusion extends. It will also improve your posture, but it won't make you look like the Tin Man!

    I thought I had one leg shorter than the other, but it was apparently the curve that make it appear shorter.
    Surgery March 3, 2009 at almost 58, now 63.
    Dr. Askin, Brisbane, Australia
    T4-Pelvis, Posterior only
    Osteotomies and Laminectomies
    Was 68 degrees, now 22 and pain free

  10. #10
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    I don't know where that "thumbs down" came from.
    Surgery March 3, 2009 at almost 58, now 63.
    Dr. Askin, Brisbane, Australia
    T4-Pelvis, Posterior only
    Osteotomies and Laminectomies
    Was 68 degrees, now 22 and pain free

  11. #11
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    Quote Originally Posted by sacket View Post
    oh my, i've gotten that exact same response many times throughout my childhood! would you believe it?! in response to my asking why one side of my hips seemed to jut out more, she told me "it's because your so skinny." that never sat well with me because i've seen many skinny people and they don't look like that. haha. but i don't blame her, really. the last thing we need to do before surgery is harbor resentment toward our parents, haha, right?



    your story sounds nightmarish and is really touching; i feel your pain (literally), and if your pain is anything like mine (and yours sounds like it's much worse), i can only hope that you find a surgeon who will take you seriously. are you still looking for one?

    my pain has been increasing more rapidly over the past couple years to the point that i can only stand for about ten to fifteen minutes at a time before i need to sit or lay down and rest. i know the numbness part sounds weird. the stinging pain is deep in my back; i can feel it, but the surface of my skin is numb and warm to the touch. unusual, i know. but i'm certainly not imagining this; that's for sure.

    my doctor, luckily (and i mean really luckily) understands my position, that is, that i'd rather go through surgery and have to end up on pain pills than to just go on pain pills now without surgery for an indefinate amount of time. i believe this because first of all, at least after surgery i'll know i did EVERYTHING i could do to try and fix this deformity before resorting to pain medication. secondly, because the chances are in my favor that after surgery and recovery i can put off being on long-term pain medicine for a while, or hopefully decrease the dosage i'd need to take compared to not having surgery. of course, there is always the chance i'll be in MORE pain after surgery/recovery, which would of course suck, but i've researched this and apparently the chances of a negative outcome are outweighed by that of a positive outcome, which is reassuring. it's a chance i'm willing to take, in other words.

    sorry for the rant.
    I'm not mad at my mom for not believing me. I think SHE thinks I am and still feels guilty. I'll never forget the look on her face when the chiropractor hung up my X-rays and we both saw them for the first time. Her face turned all red and her eyes welled up with tears and she cried. My mom doesn't cry easily. It breaks my heart to this day to remember that day. How could I ever be mad, she just didn't know and had never even heard of scoliosis.

    As far as trying to find a doctor, yes I'm still looking. Dr. Hey in N.C. has agreed to look at my X-rays and MRI's and give me his opinion. That saves me the trip out there and the expense of an office visit, which is VERY nice of him. I hope I don't get a surprise bill in the mail after his evaluation. LOL Oh well, even if he does send me a bill I will still have saved the trip out there.

    I haven't been on the forum very long. But I've learned in a short period of time NEVER to be sorry for ranting or venting or whatever. Sometimes this is the only place where you can go where people actually understand how you feel. I'm sure others will chime in to answer your other questions.


  12. #12
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    Welcome to the forum! You will find lots of support and information here--sometimes things one might forget to ask a surgeon at a visit, or some things they may not tell you because this is "normal" to them--they see so many patients.

    As a perfectionist, though, I do advise that you do what you can then leave the rest to God and your surgeon. There are some things that are out of your control (I say this b/c I am a perfectionist and it was my dd who was having the surgery).

    I'm saying that so you can have peace of mind throughout this. You *will* get through this!

    Take care!

  13. #13
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    As far as trying to find a doctor, yes I'm still looking.
    good to know! perseverance is the biggest and most crucial lesson i've learned thus far from this scoliosis mess.

    Fusion does make it difficult to slouch, though I suppose it depends how high up your fusion extends. It will also improve your posture, but it won't make you look like the Tin Man!
    this is good news! i was wondering where the thumbs down came from too.

    You *will* get through this!
    thanks, i know i will! self-confidence seems a key quality to have through this whole process, and i'm still working on it; sometimes it can be hard to have confidence with a disfiguring and painful condition, but there are millions out there who deal with it every day. i am glad to know i am not the only one! that sounds rather sadistic to say, because i wouldn't wish this condition on anybody, but you get what i mean.

  14. #14
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    I'll try to keep it short - so much to say. I had surgery 10 years ago (posterior approach only), when I was 30. My curves were around the same as yours. I've been great since then - I cross country ski, scuba dive, backpack, hike, kayak, canoe, you name it. Starting to get some aches and pains now as I age, but it was definitely the right thing to do....and my pain pre-op wasn't nearly as bad as your sounds. You will definitely be able to have a normal life, with much less pain than you're having now.

    Yes, you should get a better correction than someone older than you - you're more flexible, and you'll heal more easily as well. You should end up a bit taller, and you'll definitely look straighter/like you have better posture. The reason you look like you're hunched over is because of the twist - most people with scoliosis also have some twisting in their spine, which makes one side of their back stick out farther than the other. They should be able to help that at least a bit - maybe a lot - in the surgery.

    Just make sure to ask lots of questions about what's being done and what to expect afterward. If you're lucky, your recovery will be very smooth - I was back at work in 3.5 weeks and on a backpacking trip 4 months later, but some people have a rougher time. You'll be fine - it sounds like you have a good doctor, someone you can talk to and trust, and that's a great first step.

  15. #15
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    Quote Originally Posted by diane2628 View Post
    Just make sure to ask lots of questions about what's being done and what to expect afterward. If you're lucky, your recovery will be very smooth - I was back at work in 3.5 weeks and on a backpacking trip 4 months later, but some people have a rougher time. You'll be fine - it sounds like you have a good doctor, someone you can talk to and trust, and that's a great first step.
    aww. thanks diane for the concise but very helpful words. it is my dream to be as active as you are after surgery! and to be back at work in less than a month...wow! i can only hope i have a fairly smooth recovery as well.

    alright guys, i just thought of another question: HOW, if at all, did you sleep the night before surgery? is there anything i can eat or techniques i can use to help me get a restful night's sleep before the procedure? it would seem having a good night's sleep before such a major thing would be important, no? i'm sure i'll be a ball of nerves, but i don't want to take sleeping pills or anything that could potentially affect my blood pressure or mess up my surgery somehow.

    anybody?!

    thanks.

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