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Thread: Would like to hear from anyone that had Anterior only surgery

  1. #1
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    Would like to hear from anyone that had Anterior only surgery

    I would like to hear from anyone that has had anterior only surgery to correct their scoliosis. My daughter had anterior only surgery in August of 2006. She was scheduled to have posterior only surgery,but the day before the surgery the surgeon changed his plan to anterior only. We were already at the hospital and it was out of town, so we had no time for another opinion at that point and put all our faith in the surgeon's call. She was 16 at the time and is now 22 years old. She has had excruitiating pain ever since her surgery. We have had multiple opinions in the last 7 years and every surgeon we went to when he looked at her X-rays asked us why it was done anterior only. I do remember the surgeon saying he though it would giver her a better correction by doing it anterior only but we had it done at Shriner's hospital in Chicago and the surgeon is now at another hospital. I have tried to reach him but have not recieved a call back and since he is at another hospital he probably would not remember her surgery anyway without having access to her records. Every surgeon we have been to for antother opinion has said that they would have done a posterior surgery or and anterior plus posterior. Those that recommended revision have said they would go in posteriorly and stabalize her more and also go down another level or 2.

    She is fused from T-10 to L-2. It seems that she has significant pain right over the area of her fusion. Of course, the pain managment doctors have always been focusing at the unfused part of her spiine below her fusion because of the stress that a fusion can put on the lower levels. She has had epidurals and facet block injections on those lower levels with little help.

    Today he took a lot of time to think this out what could be causing her pain and now he thinks that since the spine is fused only anteriorly that maybe the posterior part of her spince (where her fusion is) is not totally stable and that could be causing her pain since that is the worst area of pain.

    I have searched this forum and I seem to only be able to find people that have had Anterior and Posterior or only Posterior. Is there anyone on here that has had anterior only or is it really that uncommon?

  2. #2
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    I am so sorry for the pain your daughter is enduring. I have not seen anyone on this forum who has had anterior only. I hope you are looking for an SRS revisionist Doctor with tons of experience.
    Sally
    Diagnosed with severe lumbar scoliosis at age 65.
    Posterior Fusion L2-S1 on 12/4/2007. age 67
    Anterior Fusion L3-L4,L4-L5,L5-S1 on 12/19/2007
    Additional bone removed to decompress right side of L3-L4 & L4-L5 on 4/19/2010
    New England Baptist Hospital, Boston, MA
    Dr. Frank F. Rands735.photobucket.com/albums/ww360/butterflyfive/

    "In God We Trust" Happy moments, praise God. Difficult moments, seek God. Quiet moments, worship God. Painful moments, trust God. Every moment, thank God.

  3. #3
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    I feel the same way....I am so sorry this has happened.

    It wouldn’t be a bad idea to go see someone highly qualified to do a revision surgery. Perhaps a trip to TCSC or Dr Lenke.

    She had a shorty done, so it would seem that it shouldn’t be terribly difficult to have her fixed.....this really is good news.

    Do you have any current x-rays you could post?

    Does she have Zielke hardware ?

    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
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    I know her implants were made by DePuy and they are stainless steel. I will pull out her surgical report and see what else I can find. She is at her wits end. We live in Michigan and have been to a few spine surgeons over the the last 7 years since her surgery trying to find an answer. About half said that the last 2 levels "may" not have fused properly by the looks of her x-rays, but the other half have said they think they are definately fused by the looks of her x-rays. All of the surgeons we have gone to have done revisions and one is on the SRS list. They were all here in Michigan where we live. The SRS guy said that scoliosis does not cause pain and after being fused she should not be in pain so he told her to live with it. He was a total waste of time and money to put it bluntly. I will look at her surgical report and see if I can find any more information, but she cannot even live her life like this and is so sorry she had the surgery to begin with, although her curve was progressing quite rapidly between the age of 14 when she was diagnosed and 16 when she had her surgery.

  5. #5
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    I tried to attach an x-ray but I think it came out really small, I will try to upload a larger one.

  6. #6
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    I just wanted to support you as a mom that is taking care of her daughter. Your daughter should be out doing all of the fun stuff that young people do. My only suggestion is to go next to one of the best scoliosis revisionist surgeons in the US and help your daughter get on with life. I wish you the best in helping your daughter. Susan
    Adult Onset Degenerative Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Severe disc degen T & L stenosis

    2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 in 2 surgeries
    2014: Hernia @ ALIF repaired; Emergency screw removal surgery for Spinal Cord Injury at T4,5 sec to PJK
    2015: Revision Broken Bil T & L rods and no fusion: 2 revision surgeries; hardware P. Acnes infection
    2016: Ant/Lat Lumbar diskectomy w/ 4 cages + BMP + harvested bone + prayer

  7. #7
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    Ed,
    I just looked at your X-ray, I guess she does have a "shorty" after seeing yours! I attached 2 CT images that show her hardware. I know before surgery the surgeon said she would not need a brace, but immediately afterwards he said she would need to wear a brace for at least 3 months whenever she was up and walking. She did that and when she went back to see him he had her wear it another 2 months. He must have had thought the stability of the hardware was questionable since the day before surgery he said she would need it and after the surgery he changed his mind. If only we could find a dr. that would actually take some time to try to help figure out what is wrong so she could get it fixed.

    I just find it so odd that every surgeon we have consulted have been surprised that her surgery was anterior. It makes me wonder if she did have a posterior surgery in addition if it would help. A couple of them have suggested that then the others said they would leave it alone because she could end up in worse pain. We are now desperate for an answer.

    I would be happy to hear any suggestions!

  8. #8
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    Susan,
    Thank you. The support is appreciated. My daugther is so resentful of my husband and I sometimes for getting her the original surgery. Unfortunately we were very naive at the time and the surgeon made it sound like a piece of cake, especially for teenagers. In hindsight we should have gotten a second opinion, which we did not. The surgeon made it sound like she would have the surgery and be back at school living her life in 3-4 weeks and put the whole scoliosis thing behind her that I didn't think in a million years we would still be looking for help 7 years later. She knows we did what we thought was best at the time, but she gets so depressed and it has really changed the path of her life. SHe is in pain 24/7. It hurts to walk very much, even just around the mall. It hurts to sit for more than a half hour or so. She has insomnia because she can't get comfortable even laying down. She just wants to be normal, I realize that and I wish I could find an answer.
    Lori

  9. #9
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    Hi Lori,

    I have bee following this thread and am very sorry to hear about the pain.

    I have a few lay thoughts on this....

    It may be time to travel to someone like Lenke. He only takes the worst cases apparently but I think your daughter enduring all those years of pain with only a 5-level fusion should qualify as a worst case. There is something very unusual going on there it seems. Five levels is the shortest fusion I recall reading about on this forum. I think one other kid had a five level fusion but he has congenital.

    Anterior fusions can include less levels which is a huge plus when talking about TL curves like your daughter has. There is a point in the lumbar where if you go below it, you are likely to need an extension to pelvis. If an anterior fusion can stop at L2 as in your daughter but a posterior fusion has to go to L3 or L4, that would be a VERY good reason a surgeon would chose anterior in my opinion. It translates to the person likely needing one surgery for life and staying flexible versus two surgeries and losing flexibility through the lumber. Night and day. Those are very high stakes and I would still choose anterior for my child if it mean staying above L3 and despite your testimonial. That's the state of affairs as I understand it but of course I am not expert.

    I think your surgeon was trying his best and would be surprised at the outcome.

    Is the pain under the entire fusion or towards the bottom?

    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."

  10. #10
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    hi Lori
    i am so sorry for your daughter's pain...
    and the doctor who said to "live with it"
    should have his license pulled....
    disgusting attitude!
    i would have been tempted to tell him what i thought
    of him...in very clear language!

    just looking at the X rays, it looks as if the fusion wasn't
    long enough to give her spine support...
    i am just a scoli patient... but common sense tells me her fusion
    may be too short to give her the support her spine needs...so perhaps it was both
    issues that caused the lack of success...too short and anterior only.

    i agree with Ed...that you might want to call Dr Lenke's office
    and ask for their soonest appointment...
    perhaps revision that lengthens the fusion would ultimately give
    your daughter the pain free life she so deserves...
    and maybe it is more than 2 more levels of fusion...but if they
    go in to revise her fusion, it seems they should fuse what is needed
    so that she will not need further surgery after that.

    as for her anger...it is easy to understand, but must be so hard
    for you and your husband...
    i hope she has a counselor to have a place to vent her frustration...
    and if you can offer to go with her to any appointments for revision,
    maybe that could help to soften her attitude...

    best of luck...
    jess
    Last edited by jrnyc; 02-03-2013 at 12:43 PM.

  11. #11
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    Quote Originally Posted by LAL View Post
    Susan,
    Thank you. The support is appreciated. My daugther is so resentful of my husband and I sometimes for getting her the original surgery. Unfortunately we were very naive at the time and the surgeon made it sound like a piece of cake, especially for teenagers. In hindsight we should have gotten a second opinion, which we did not. The surgeon made it sound like she would have the surgery and be back at school living her life in 3-4 weeks and put the whole scoliosis thing behind her that I didn't think in a million years we would still be looking for help 7 years later. She knows we did what we thought was best at the time, but she gets so depressed and it has really changed the path of her life. SHe is in pain 24/7. It hurts to walk very much, even just around the mall. It hurts to sit for more than a half hour or so. She has insomnia because she can't get comfortable even laying down. She just wants to be normal, I realize that and I wish I could find an answer.
    Lori
    Lori, as a parent we always do what we think is best at the time. We only second guess ourselves if things do not go as we had wished. Not knowing your daughter at all or how she feels, I hope that you have or will consider counseling. I would suggest that you get at least 2 opinions from big time revisionist scoliosis specialists. You will probably need to travel out of state. Moms make it work whatever it takes! Your daughter is young and has lots of life ahead of her. With the right surgery, she will be very active and able to pursue academic or vocational training or be whatever she wants to be with only some/minimal pain. Your seeking help on this forum was your first step, and now, Lori, your daughter's new life is ahead of you. There is a very awesome young lady whose name I cannot remember right now, but will send you in a PM. Her blog is so inspiring....it inspired this jaded 66 year old women, anyway. She will probably write back if you send her an email. She is inspiring!

    So, best of luck and keep in touch. You have lots of friends here. Susan
    Adult Onset Degenerative Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Severe disc degen T & L stenosis

    2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 in 2 surgeries
    2014: Hernia @ ALIF repaired; Emergency screw removal surgery for Spinal Cord Injury at T4,5 sec to PJK
    2015: Revision Broken Bil T & L rods and no fusion: 2 revision surgeries; hardware P. Acnes infection
    2016: Ant/Lat Lumbar diskectomy w/ 4 cages + BMP + harvested bone + prayer

  12. #12
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    Daughter having revison surgery Oct. 15th

    Quote Originally Posted by jrnyc View Post
    hi Lori
    i am so sorry for your daughter's pain...
    and the doctor who said to "live with it"
    should have his license pulled....
    disgusting attitude!
    i would have been tempted to tell him what i thought
    of him...in very clear language!

    just looking at the X rays, it looks as if the fusion wasn't
    long enough to give her spine support...
    i am just a scoli patient... but common sense tells me her fusion
    may be too short to give her the support her spine needs...so perhaps it was both
    issues that caused the lack of success...too short and anterior only.

    i agree with Ed...that you might want to call Dr Lenke's office
    and ask for their soonest appointment...
    perhaps revision that lengthens the fusion would ultimately give
    your daughter the pain free life she so deserves...
    and maybe it is more than 2 more levels of fusion...but if they
    go in to revise her fusion, it seems they should fuse what is needed
    so that she will not need further surgery after that.

    as for her anger...it is easy to understand, but must be so hard
    for you and your husband...
    i hope she has a counselor to have a place to vent her frustration...
    and if you can offer to go with her to any appointments for revision,
    maybe that could help to soften her attitude...

    best of luck...
    jess
    Jess,
    It seems that the surgeons agree with you that she needs her fusion extended. Since I posted this she has had all kinds of injections, a nerve ablation, increase in pain meds, cold laser therapy, acupuncture, massage and nothing has helped. We had two surgeons say that in their opinion the first surgeon, while trying to save her lumbar vertebrae's, just chose the wrong level to stop her fusion at and they both felt it should have gone down just one more level. They can "push" her into alignment, and for those few seconds she is out of pain, but when they let go she cannot hold that position. She fused from T-10 to L-2 and is having posterior surgery on the 15th to go extend it to L-3. At first he was going to go to L-4 but after looking at her x-rays and CT scan he has decided L-3 is enough, I hope he is right. We are both overcome with anxiety over this surgery coming up, as the last one it seemed like she never came out of the pain and this is seven years later now. She needs this to work so bad. Of course she knows she may still have pain, but is hoping for at least a good percentage of relief. Her hips did go "off balance" within a month or two after her first surgery and her new surgeon just feels that she is still out of alignment and not stable enough and that is the source of her pain. I sure hope he is right!

  13. #13
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    hi Lori
    i am so very glad that your daughter will have revision surgery to address
    the inadequate support the last fusion left her with.
    i truly hope the extension to L3 is exactly what she needs, will provide
    the strength and structure to get...and keep... her spine into alignment.
    then she can come out of this surgery with a spine that is straight and strong, and will permit her to have a life in which she can function and enjoy things again, rather than just suffer thru and tolerate them.

    the anxiety is so completely understandable...
    i hope you have medication to help cope with it...along with a therapist
    who understands reality based anxiety...and all you have been dealing with
    since trying to help your daughter get thru this journey to a strong back and a healthy life. anyone facing major surgery, or watching a loved one face it, could benefit from having a safe and objective place and person, to listen and offer support, whether it is for anxiety, fear, anger, or frustration connected with the difficulties of living with scoliosis, trying to fix things with surgery, or watching a loved one go thru the
    process.....

    i hope the surgery and recovery are successful, and that your daughter becomes pain free, or very close to it, after healing is completed...

    best wishes...
    jess...and Sparky
    Last edited by jrnyc; 10-06-2013 at 02:28 AM.

  14. #14
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    Seven years in pain is a LONG time at her age....poor thing....I hope that this helps in solving the problem.

    Will they just fuse to L3, and leave the existing hardware?

    Deep breaths.

    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

  15. #15
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    Quote Originally Posted by titaniumed View Post
    Seven years in pain is a LONG time at her age....poor thing....I hope that this helps in solving the problem.

    Will they just fuse to L3, and leave the existing hardware?

    Deep breaths.

    Ed
    Yes, they are leaving in the existing hardware. Originally he was going to go in anteriorly and take out the old hardware and do an osteotomy at L-2 to straighten that up a little more, leaving the anterior hardware out and then just replace the hardware all posteriorly and extend to L-4. After reviewing her recent CT scan and bending X-rays, he has now decided to just do the posterior surgery and extend to L-3. From what I understand the rods and screws will go higher than L-3 to give her more support? But her fusion will go to L-3. We can see by looking at her that the correction of the rotation changed a lot within 2 to 3 months after her first surgery. Her one hip sticks out quite a bit, and it was aligned immediately after surgery. He thinks he can correct that rotation with just going down one more level. I hope all her problems have been because of being out of balance.

    Deep Breaths is right! She is scared to death after her experience with the first surgery and we have tried every type of treatment to avoid another one, but have found that nothing helps so hopefully it is because of her alignment and this helps.
    Lori

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