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Thread: New here: Need guidance/opinions

  1. #1
    Join Date
    Feb 2012
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    New here: Need guidance/opinions

    Hi there, I'm going to start with an apology because I anticipate this being a very long read. I am desperate for answers though and am greatly appreciative of this forum. I have read some of the posts on here and I see people are very helpful, even if it's just to know I'm not alone.

    To start my name is Shana and I'm a 24 year old full time first grade teacher at a private school.
    When I was 13, during routine checks in the Gym a nurse came in and saw that I had a slight case of scoliosis. She sent a note home recommending I see a doctor but my mother ignored it because it said "slight". The following year I had another check that said similar and once again my mom ignored it. That year I started feeling fatigued and increased back pain so my mom ended up taking me to a doctor. Initially the doctor said I absolutely had a problem and I would ultimately need surgery as I was too far progressed for a brace but said I could wait a few years. At my first 3 month check up he took back what he said and told me my curves have progressed quickly and he gave me 6 months. I had my first surgery when I was 15 (2004). I had 2 curves (top 50, bottom 60) so I was given rods from my neck to my L-3. The surgery had a lot of complications, I had a bad infection, etc. Finally I started learning to cope with it and was feeling better until I started gradually having a significant amount of pain. Some time between 2009-2010 the pain was so bad on a regular basis that I started seeing a neurologist because my General MD though that was what I needed. I saw the Neurologist for a year with him pulling me back and forth but it ultimately came down to him having no idea what was wrong with me. He put me through an MRI with contrast and said that "something" was wrong in my lower back because the contrast went invisible at some point but he couldn't figure out what it was. I got fed up with him and started searching for another doctor. The only doctor that was willing to even look at me (due to prior surgeries) was at the Fort Lauderdale Spine Specialists. He looks at my MRI with me and within seconds told me I had fractured my L-4 so badly that it look like 2 separate bones. He worked with me very well and in June 2011 I had my 2nd surgery. He fused my L-4-S-1 and connected it to my previous fusion. The DR told me the fracture was even worse than he initially thought and I had 2 large cysts growing in between the broken bone. He also told me he's never seen a case so bad and couldn't believe I was capable of walking. Thankfully, this surgery did help however now I feel like it's going backwards. My pain is so extreme that my surgeon had me see a pain management doctor and I've since had 3 steroid shots in my back. Prior to the 2nd surgery I exercised A LOT and had lost a ton of weight (I am overweight). Post surgery I've gained all the weight back and I can't walk more than 20 steps without having to sit down and slouching forward. The pain management Dr said the pain is relating my SI joint. He wants to try to burn away the nerves so I don't feel the pain anymore, but with research I've seen most people have to redo it at least once a year. The other option (and if the burning doesn't work) is another surgery. This surgery would be fusing my SI joint so there is no movement to put pressure on the joint. Both of these options make me extremely nervous. First, I am only 24, to get shots in my back for the rest of my life (even though it's just once yearly) is overwhelming. Second, I fear that if I get this surgery I will then have an entirely fused spine that is going to start putting pressure in my hips and pelvis. I'm scared that this is going to be a never ending battle.

    I also have this miserable popping. It feels like the popping of your knuckles but it comes from my lower spine and travels up into my ears. It hurts and leaves me extremely uncomfortable and startled. I've asked the doctor what it is and he just says not to worry and that it's normal. I'm not sure how normal it is and he said it would eventually stop and it hasn't even gotten close to stopping.

    So my questions are- has anyone had this similar SI issue and what has been your results? What about the popping? Any idea what it is?

    Thanks in advance!

    ~Shana

  2. #2
    Join Date
    Jan 2009
    Location
    Ames, Iowa
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    1,250
    Shana--
    It sounds like you've had quite a journey already with your back and you're only 24! I can't really address the S1 issues other than that I've been fused from T2-S1 with pelvic anchors. The popping sounds come up on the forum quite often. You can do a search and you will find a lot of others who experienced it. Usually it isn't a serious problem, I believe. I think you are going to need to find a very good revisionist surgeon to at least evaluate you. Welcome and good luck. Janet
    Janet

    61 years old--57 for surgery

    Diagnosed in 1965 at age of 13--no brace
    Thoracic Curve: 96 degrees to 35 degrees
    Lumbar Curve: 63 degrees to 5 degrees
    Surgery with Dr. Lenke in St. Louis--March 30, 2009
    T-2 to Pelvis, and hopefully all posterior procedure.

    All was posterior along with 2 cages and 6 osteotomies.

  3. #3
    Join Date
    Jun 2011
    Location
    Southern CA
    Posts
    2,224
    I would like to welcome you and ask where do you live?
    Melissa

    Fused from C2 - sacrum 7/2011

    December 8, 2014 - Another Broken Rod Surgery

  4. #4
    Join Date
    Oct 2008
    Location
    Sunshine Coast, Queensland, Australia
    Posts
    3,261
    Welcome Shana. I'm sorry to read about your difficulties with your scoli at such a young age. I'm with Janet, I think a really good revision surgeon is a must. There are many on here who come extremely well recommended and if there's one thing I've learned, the quality of your surgeon has the greatest effect on your outcome. Unfortunately, all surgeons are not created equal.

    I am sure some of the really knowledgeable members will come along and give you some proper advice soon. I hope the forum can set you on the road to a much better outcome.
    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

  5. #5
    Join Date
    May 2009
    Posts
    3,745
    i get injections in my SI joints every 3 months...it helps with the pain...i have not had fusion surgery...yet...
    you might want to write to Linda Racine, the moderator of this forum...
    she wrote and told me that fusing SI joints is often not helpful...

    jess

  6. #6
    Join Date
    Feb 2012
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    6
    Thank you all for responding so quickly. I live in Florida (just north of Fort lauderdale).
    What is a revisionist surgeon an how would I go about finding one? My current surgeon is wonderful. he's very kind, he explains everything to me, etc. I really like him and the pain management dr in his office which is a lot for me to say because after my first surgery and the reprocussions I started to strongly dislike and not believe most doctors.
    Jess, for the SI joint relief, that's what I've gotten but I was under the impression you could only get them 3x a year. I've had them 3x in about 3 months. They don't help me long enough or well enough to function throughout the day. Are we talking about the same injection? The steroid? My dr says its very bad for the body and he's not comfortable giving them to me.
    I forgot to mention another issue- I've gained a lot of weight due to inactivity and I think depression might have something to do with it. I want to go back to the gym but I can hardly walk. Is there anything aside from dieting that I can do?
    Thanks again! I wanted to cry finding this website. It's so nice to talk to people who know what I'm going through.

  7. #7
    Join Date
    Sep 2003
    Location
    Northern California
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    6,793
    Quote Originally Posted by Shana_Nicole View Post
    Thank you all for responding so quickly. I live in Florida (just north of Fort lauderdale).
    What is a revisionist surgeon an how would I go about finding one? My current surgeon is wonderful. he's very kind, he explains everything to me, etc. I really like him and the pain management dr in his office which is a lot for me to say because after my first surgery and the reprocussions I started to strongly dislike and not believe most doctors.
    Jess, for the SI joint relief, that's what I've gotten but I was under the impression you could only get them 3x a year. I've had them 3x in about 3 months. They don't help me long enough or well enough to function throughout the day. Are we talking about the same injection? The steroid? My dr says its very bad for the body and he's not comfortable giving them to me.
    I forgot to mention another issue- I've gained a lot of weight due to inactivity and I think depression might have something to do with it. I want to go back to the gym but I can hardly walk. Is there anything aside from dieting that I can do?
    Thanks again! I wanted to cry finding this website. It's so nice to talk to people who know what I'm going through.
    Revision (not revisionist) surgeons are complex spine surgeons who specialize in treating patients who have had prior surgeries. While there are no really big name revision surgeons in Florida (at least that I know of), I have heard that Anthony Moreno (Tampa) and Nate Lebwohl (Miami) are both very experienced.

    --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
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    If you've signed up and are having trouble posting, please check your spam folder. An email was sent to the email address which you subscribed. You have to follow the instructions in that email. Done that and still having trouble posting? Contact Joe O'Brien at jpobrien@scoliosis.org.

  8. #8
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    Feb 2012
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    Linda, I believe my current surgeon may be a revision surgeon. He was my 2nd surgeon and told me he specializes in patients who have had prior surgeries. He's also strictly a spinal specialist. I am on my mothers insurance as well so I cannot go out of broward county. She works for broward county hospital district.
    I believe I have a great surgeon an I'm sure my so pain has nothing to do with the surgery he just did (I mean not his fault, just an unexpected reprocussio
    ). I'm nervous and overwhelmed that this is going to overtake my life. I have so many rhinos I've got planned for myself and in scared I can't do them. I'm a new teacher and I want to teach in another state but if I leave I won't have insurance, a doctor, or family to help me when I have problems. Is there a real light at the end of the tunnel or is it true what people say- once you have one back surgery it never stops?

  9. #9
    Join Date
    May 2009
    Posts
    3,745
    hi Shana
    well, i don't know of any steroid that is good for you...
    so of course there is that risk...

    i haven't had fusion surgery...yet...
    if i had it already, i would probably want to opt to have it revised, rather than going with shots,
    but that is just my opinion, not based on anything medical...
    i've been getting shots to try to put off having surgery...i do not know that i can avoid it...

    i would suggest investigating...and asking surgeons...what they know about SI joint fusion outcomes...
    have you asked the surgeons why that is the only option you have....???
    just my opinion, but i would try to discuss the procedure with as many doctors as i could...
    i do not think the surgery is that common...

    as for nerve ablation, burning nerves, the nerves do come back...for me, the procedure
    had to be done again, and it didnt give me much more than weeks of relief...
    as far as i know, the nerves always do come back...

    best of luck finding answers...
    you have my sympathy...
    i know how restrictive the pain from spinal problems can be...

    jess

  10. #10
    Join Date
    Sep 2003
    Location
    Northern California
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    6,793
    Quote Originally Posted by Shana_Nicole View Post
    Linda, I believe my current surgeon may be a revision surgeon. He was my 2nd surgeon and told me he specializes in patients who have had prior surgeries. He's also strictly a spinal specialist. I am on my mothers insurance as well so I cannot go out of broward county. She works for broward county hospital district.
    I believe I have a great surgeon an I'm sure my so pain has nothing to do with the surgery he just did (I mean not his fault, just an unexpected reprocussio
    ). I'm nervous and overwhelmed that this is going to overtake my life. I have so many rhinos I've got planned for myself and in scared I can't do them. I'm a new teacher and I want to teach in another state but if I leave I won't have insurance, a doctor, or family to help me when I have problems. Is there a real light at the end of the tunnel or is it true what people say- once you have one back surgery it never stops?
    How many rhinos?

    Most spine surgeons do some revision surgery. The ones who do a lot get mentioned here on a regular basis. Have you done a searched your surgeon's name here in the forums?
    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
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    If you've signed up and are having trouble posting, please check your spam folder. An email was sent to the email address which you subscribed. You have to follow the instructions in that email. Done that and still having trouble posting? Contact Joe O'Brien at jpobrien@scoliosis.org.

  11. #11
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    3,531
    Hi Shana

    Is your popping coming from the L4-S1 area? Way down low? You are only 8 months post from your last extension surgery, Iím wondering if these areas are fused?

    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

  12. #12
    Join Date
    Feb 2012
    Posts
    6
    Lol Linda I meant things, rhinos is what I get for trusting auto correct and not rereading. I have not researched my Dr on here yet but I will do so.
    Ed, my l-5 to s-1 are fused. The popping is hard to pinpoint. I think its either from that region or my si joint. The popping started shortly after the surgery. The Dr showed me on my films that my fusion fused solid.

  13. #13
    Join Date
    Sep 2003
    Location
    Northern California
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    Quote Originally Posted by Shana_Nicole View Post
    Lol Linda I meant things, rhinos is what I get for trusting auto correct and not rereading. I have not researched my Dr on here yet but I will do so.
    Ed, my l-5 to s-1 are fused. The popping is hard to pinpoint. I think its either from that region or my si joint. The popping started shortly after the surgery. The Dr showed me on my films that my fusion fused solid.
    While you can usually see fusion mass on X-rays, there is no way to know for certain if it's solid.
    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
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    If you've signed up and are having trouble posting, please check your spam folder. An email was sent to the email address which you subscribed. You have to follow the instructions in that email. Done that and still having trouble posting? Contact Joe O'Brien at jpobrien@scoliosis.org.

  14. #14
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    Feb 2012
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    Linda, since it's then just a guess by the Dr that I am solid, could that be what is causing the pain? I'm not sure if that seems accurate for my position because the pain is not where it used to be. The pain I had pre-surgery is, thank God, gone. My current pain is lower and I feel it is probably accurate that it's my SI joint because if I match up the pain to the body part, it's at the SI area, I just don't know why.

    Is there any particular reason that SI joints tend to flare up? Naturally I know everybody's body is different, but I'm just wondering if there is a more common reason. I am a very analytical person and even though I may not get answers, I'm frustrated because I just wish I knew why I had the pain. I'm going to the Dr today to try again with the nerve numbing procedure, hopefully I won't have to cancel this time. Twice before it was canceled due to gas .

  15. #15
    Join Date
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    Location
    Northern California
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    Quote Originally Posted by Shana_Nicole View Post
    Linda, since it's then just a guess by the Dr that I am solid, could that be what is causing the pain? I'm not sure if that seems accurate for my position because the pain is not where it used to be. The pain I had pre-surgery is, thank God, gone. My current pain is lower and I feel it is probably accurate that it's my SI joint because if I match up the pain to the body part, it's at the SI area, I just don't know why.

    Is there any particular reason that SI joints tend to flare up? Naturally I know everybody's body is different, but I'm just wondering if there is a more common reason. I am a very analytical person and even though I may not get answers, I'm frustrated because I just wish I knew why I had the pain. I'm going to the Dr today to try again with the nerve numbing procedure, hopefully I won't have to cancel this time. Twice before it was canceled due to gas .
    Yes, people with a non-union tell me that it's painful, usually right at the level that isn't fused. Since your pain seems to be coming from below that area, it sounds like that's not your problem.
    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
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    If you've signed up and are having trouble posting, please check your spam folder. An email was sent to the email address which you subscribed. You have to follow the instructions in that email. Done that and still having trouble posting? Contact Joe O'Brien at jpobrien@scoliosis.org.

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