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Thread: 4th Surgery in 6 Months.. Advice Please! :)

  1. #1
    Join Date
    Sep 2013
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    4th Surgery in 6 Months.. Advice Please! :)

    Hi everyone!

    This is my first post here. No one truly can understand what I am going through except those have been through it too, so I would appreciate any insight/advice you could give me. Sorry I'll try to keep it as short as I can- just want to get you all the details- so here it goes!

    Like always- diagnosed w/idiopathic scoliosis at 12/13 during school. My parents took me to one doctor- and my curves were measured at 35 and 38 at the time. No follow up- ever. Never asked how I was dealing with it. Never brought it up again- ever. Suffered with extreme depression since. Made my first appointment at 18 with a specialist. Too late for bracing at that point. Doctor said wait and see, 50/50 shot I would need surgery. I'm now 27.

    July 2013- now at almost 60 degrees at each curve- with scoliosis, kyphoscoliosis, DDD, etc, etc, etc.. underwent first surgery to fuse T2-L4. 80% through surgery while putting in a screw, the nerve signal machines reported I lost function in my right leg and then my left. They removed all screws and rods, closed me up- and waited. Luckily- I could move my legs- terrifying, nonetheless. My surgeon says the machines just reported wrong, but I've met a few other people that have had the same thing happen and weren't as lucky- so I am starting to doubt that. Had surgery a few days later and was fused from T2-L4.

    Two months later, after one fall- and a head one car accident- started having really bad pain. (I was going 5-10 mph at best, not a serious car accident). Went to see my surgeon, xrays showed I was fine, but I knew something wasn't right. Kept pushing for a CT- that finally showed the screws at L3, L4 came loose. Had surgery in November to put in a cage and reinforce with bigger, and more screws. Saw my doctor again yesterday, and was told L5 is not holding up and I need to be fused now to the sacrum. The original plan was to wait 10-20 years to fuse the remaining segment to maintain as much flexibility as I could while I was young. 10 years turned into 2 months.. To make matters worse, I am having the exact same pain in the exact same place as I did when my screws were loose. I KNOW my screws are loose again, but waiting on another CT to confirm.

    I could handle my screws coming loose if it indeed was from my car accident- but I am starting to doubt that. My surgeon said he has seen people in much more severe car accidents and falls than I had much sooner after surgery that were fine. Now with my screws almost surely loose again, I am reaching out for help. Why isn't my body taking these surgeries? This will be my fourth surgery in nearly six months and I'm only 27- and I haven't even had a baby yet, which I really want. I've had so many complications already, and I haven't even hit the one year mark to know if I am fused yet! Let alone all the things that can happen if you don't fuse correctly.. or even if you do.... :|

    I've read a lot about people fused to the sacrum that are either permanently disabled or not able to sit more than 5 minutes, 30 minutes at best. What advice can you give me about fusing all the way down? I'm already T2-L4.. so I don't know how much more it will really affect me, but I really would like to know what I'm in for. As far the nerve machine issue, what are your thoughts? Do you think it was just the machine, or am I just really, REALLY lucky? Any thoughts as to why my screws have come loose twice now? Any tests I can do to get this figured out? As far as pregnancy- my doc says to fuse to L5 first, then try to have a baby because of the extreme pain I'm in. (He first said baby first- but not until I told him about my pain). But after reading people can't sit more than minutes at a time, how realistic is it I will be able to carry a baby then? or even now for that matter? I would really appreciate any insight you all could give me.

    Scoliosis is so great, isn't it??!!

    -Lauren


    I attached Xray pics of the before/after of 2nd surgery- I will try to upload the revision surgery pic soon. (Xray doesn't show the cage though, so everything looks the same)
    Attached Images Attached Images

  2. #2
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,269
    Hi Lauren...

    Your surgeon really flattened out your lumbar spine. I'm guessing that must be difficult to get accustomed to. Your surgeon might not have done anything wrong, but it wouldn't hurt to get another opinion. Where are you located?

    --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.

  3. #3
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    Sep 2013
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    Hi, Linda!

    Thanks for responding so quickly. Yeah, it took a little bit to get used to. I am located in Michigan, but willing to travel. I have read good things about Dr. Lenke. Any suggestions?

    Thanks,

    Lauren
    Last edited by laurenhigginson; 02-23-2014 at 08:42 PM.

  4. #4
    Join Date
    Jan 2012
    Location
    Yacolt, WA
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    Lauren, I cannot answer most of your questions, but wanted to say how sorry I am that you have been through so much!

    Some of my random thoughts:
    - be careful about getting pregnant on some of the meds that we take as they might not be good for a forming baby
    - I am fused to the sacrum and can sit for as long as I want, walk pretty much as far as I want.
    - like Linda said, have you thought about a second opinion from a surgeon that does lots of adult deformity surgeries at a University hospital? The surgeon that you are seeing now may have those credentials, but the questions that you are asking need professional opinions.

    Best of luck! Sending healing thoughts your way, Susan
    2011: Degenerative Adult Onset Scoliosis @65
    25* T levoscoliosis/ 36* L dexroscoliosis w/ 11.2 cm coronal & 3.5 cm sagittal balance T kyphosis 90*
    Severe disc degen thoracic & lumbar stenosis
    Surgery: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 2 surgeries
    3/2013, Dr. Hu @ UCSF
    Postop hernia @ ALIF incision repaired 2014
    8/2014: Rev surgery OHSU Dr. Hiratzka hardware removal T3-T5; reinstrument & revision fusion T3-T6
    Proximal Junctional Failure w/ SCI
    Cauda Equina Syndrome

  5. #5
    Join Date
    Sep 2013
    Posts
    14
    Hi, Susan!

    Thanks for answering and I appreciate what you said. I am thinking about getting a second opinion, just not really sure where to start. I got a second opinion before my first surgery. My husband and I went all the way to Minneapolis and all they said was, why aren't you seeing your local surgeon? They said he was really, really good. He is an SRS surgeon, so I feel comfortable, but am not against someone else looking at my case too.

    So, you are fused T3-S1 right? That is SO encouraging to hear you still are able to sit for as long as you want and live a full life! Do you think I will lose much more by going from T2-L4 to T2-S1? Are you still able to bend over and that type of thing?

    Thanks so much for your help!

    Lauren

  6. #6
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    Northern California
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    Yes, Dr. Lenke is one of the best. Getting in to see him isn't easy, and can take a lot of time.

    I don't really know of anyone who specializes in adult revision in Michigan (though I'm sure there must be someone). You might want to consider Minnesota. I've heard good things about Joseph Perra, Francis Denis, and David Polly. If you want to come to San Francisco, I can hook you up with several great surgeons. Or, if you have relatives or connections in other cities, let me know.

    --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.

  7. #7
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    Sep 2013
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    I did see Dr. Perra, actually a few years ago. He is the one that said I should stay with Dr. Kasten. How long does it take to get into Dr. Lenke normally? I'm willing to travel- so San Francisco is definitely an option.. my brother also lives in NYC. Are the other doctors you recommended pretty comparable to Dr. Lenke?? Thanks

  8. #8
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    Sep 2003
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    Northern California
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    Hi Lauren...

    Without a lot of detailed information, it would be impossible for anyone to know what happened with your motor evoked potentials during surgery. It's not uncommon to see false positives. When that happens, there are protocols to follow to see if they can be turned around. If they can't do it any other way, the surgeon removes the implants. Better to be safe than sorry.

    It's also impossible for any of us to know what happened with your loose screws. I agree that it seems unlikely that it had anything to do with the car accident. Did you wear a postop TLSO brace?

    I'm also fused to the sacrum, and have absolutely no discomfort when sitting. It took about 3 months after my surgery to be able to sit for extended periods of time. In terms of flexibility, I hate being fused to the sacrum. But, I traded all of the back and leg pain I had for that inflexibility, so I'd make the same choice again today.

    I can get one of the surgeons I work with to look at your case. If you're interested, send me a PM. I'll need any imaging you have, as well as surgery reports.

    --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.

  9. #9
    Join Date
    Oct 2008
    Location
    Sunshine Coast, Queensland, Australia
    Posts
    3,152
    From my own experience and those I've read about, the sitting problem is only in the early weeks/months. I am fused to sacrum with pelvic fixation and had trouble sitting for long, for maybe 6 weeks. Since then, I can sit for as long as I want. Stand and walk as long as I want too.

    Best of luck!
    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
    Join Date
    Apr 2012
    Location
    San Jose, CA
    Posts
    515
    I am fused t6 to sacrum and can sit for as long as I want. I am an accountant and sit all the day. I take a 20-30 min walk at lunch time, but it's my habbit - I did it before the surgery too. Sitting was not easy in the early months, but I could comfortably sit for an hour at about 3 months. Good luck!
    I am stronger than scoliosis, and won't let it rule my life!
    45 years old - diagnosed at age 7
    A/P surgery on March 5/7, 2013 - UCSF

  11. #11
    Join Date
    Jan 2012
    Location
    Yacolt, WA
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    1,221
    Quote Originally Posted by laurenhigginson View Post
    Hi, Susan!

    Thanks for answering and I appreciate what you said. I am thinking about getting a second opinion, just not really sure where to start. I got a second opinion before my first surgery. My husband and I went all the way to Minneapolis and all they said was, why aren't you seeing your local surgeon? They said he was really, really good. He is an SRS surgeon, so I feel comfortable, but am not against someone else looking at my case too.

    So, you are fused T3-S1 right? That is SO encouraging to hear you still are able to sit for as long as you want and live a full life! Do you think I will lose much more by going from T2-L4 to T2-S1? Are you still able to bend over and that type of thing?

    Thanks so much for your help!

    Lauren
    Lauren, you are on your way to healing and an active life! I am fused from T3 to sacrum. Linda said that she hates being fused to sacrum, but there are only a few things that I found that I cannot do: hula/Polynesian dancing, get out of a window seat on Frontier airlines when the person in front of me had his seat all the way back, and flip turns in the pool. When I bend, I bend at the hip to pick things up. I am SO happy that I am NOT in pain any more! Yes, it did take maybe 3to 4 months to be able to sit comfortably.

    You really do need another opinion from a very qualified adult spinal deformity surgeon. Sure, Dr. Lenke is probably very, very good....but so are many other spine surgeons. Someone said that Dr. Lenke's nurse told his patients about this Forum, so maybe that is why there are so many of his patients are on the forum.

    Wishing you the best as you find help as you certainly deserve it. Hugs, Susan
    2011: Degenerative Adult Onset Scoliosis @65
    25* T levoscoliosis/ 36* L dexroscoliosis w/ 11.2 cm coronal & 3.5 cm sagittal balance T kyphosis 90*
    Severe disc degen thoracic & lumbar stenosis
    Surgery: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 2 surgeries
    3/2013, Dr. Hu @ UCSF
    Postop hernia @ ALIF incision repaired 2014
    8/2014: Rev surgery OHSU Dr. Hiratzka hardware removal T3-T5; reinstrument & revision fusion T3-T6
    Proximal Junctional Failure w/ SCI
    Cauda Equina Syndrome

  12. #12
    Join Date
    Sep 2013
    Posts
    14
    Thank you everyone for replying. It is very nice to know that you don't have problems being fused to the sacrum. I really appreciate everyone's support

    Take care!

    -Lauren

  13. #13
    Join Date
    Apr 2010
    Location
    Waterloo, IL
    Posts
    1,503
    Lauren,
    Dr. Lenke was my surgeon and I have extremely high regards for his skills, however, there are other excellent scoliosis surgeons. I would trust any of Linda's recommendations. I am fused t4 to the sacrum. I had trouble sitting during the early months of recovery but can sit in the car for 3 or 4 hours before wanting to stretch and walk. In retrospect, I wasn't a good sitter even before my surgery. In my signature, I have a short video of my first swinging of a golf club after surgery. I couldn't imagine that it would be possible with rods in my back. I was afraid I would be the Tin Man of the Wizard of Oz. Good luck in finding the best surgeon possible. I am sorry that you have been through so much at such a young age.
    Karen

    Surgery-Jan. 5, 2011-Dr. Lenke
    Fusion T-4-sacrum-2 cages/5 osteotomies
    70 degree thoracolumbar corrected to 25
    Rib Hump-GONE!
    Age-60 at the time of surgery
    Now 63
    Avid Golfer & Tap Dancer
    Retired Kdgn. Teacher

    See photobucket link for:
    Video of my 1st Day of Golf Post-Op-3/02/12-Bradenton, FL
    Before and After Picture of back 1/7/11
    tap dancing picture at 10 mos. post op 11/11/11-I'm the one on the right.
    http://s1119.photobucket.com/albums/k630/pottoff2/

  14. #14
    Join Date
    Aug 2008
    Posts
    63
    Hi Lauren,

    I'm six months post op fused to sacrum. I can not sit for more than 5 minutes. It's thought that I may have some nerve damage.

    Sorry for your issues.

  15. #15
    Join Date
    Sep 2013
    Posts
    14
    Hi Karen,

    Thank you for what you said I watched your video and that is so encouraging! Nice golf swing by the way! My husband and I like to golf so I'm very happy that you are able to still golf as well. Hope you are doing well!

    -Lauren

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