My daughter is 15 with congenital spondylolisthesis. She's grade II and has tried non-surgical methods to relieve the pain for 18 months. At her last dr. apt we decided that she would have a spinal fusion of L5 -S1 with some reduction of her slip. I understood this surgery.
Last night her pediatric orthopaedic surgeon called me with the results of her MRI. He said that it showed some stenois, which he explained to me as a narrowing of the canal where the nerves are. He said that along with the fusion she would now need decompression. He will now do this surgery in conjuction with his adult spine associate. Has anyone had both of these surgeries together? Any additional explanation of this procedure would be beneficial to us. I'm beginning my list of questions for when he calls me back and could use lots of information.
I had a laminectomy in June because of severe spinal stenosis---I could hardly walk. At the same time I was fused posteriolateral from L3-S1 with BMP on sponges. I'm doing great. Do your surgeons have spine fellowships?
Thank you for your reply. Yes, the pediatric ortho has a fellowship in pediatric spine surgery. The adult dr. is only one of two at the hospital that are doing the ADR surgery. I feel that my daughter is in very good hands.
Hi! My doc. wants to do fussion on my L4-5 but my other doc. said to hold out as long as i can. Did your doc. tell you that if you do it,down the road it may be difficult to do any future repairs if needed because of the fussion? Not to get you nerved up or anything,but did you know %50 of all back operations either do nothing,or make it worse. Did you get any 2cd opinions from other doc.? Did this doc. besides telling you all the benifits from this procedure,also tell you all the negitive? its just that i hear so many horror stories,like with my niece,who had [supposavly] a simple back operation,well,that was 8 yrs ago,and ever since,they had to go back in 6 times,the last time[1 yr]they put 2 titanium rods in her back,now she takes all these narcotics,that will never take away the pain completly,but try to make her life some-what bearable on a daily basis.Or the guy who had a so called simple operation on his back,ended up parlyzed from the neck down? Yes its rare,but it happens.The back is like the universe,so much they don't know yet,with all the nerves.When i asked my surgon if he can garantee that i will be able to walk,let alone the surgery being a success,his reply-No surgon can garantee that when it comes to the back! So i said,when you can,then,and only then,will i get it done!
Last edited by madhatter; 02-16-2005 at 08:42 AM.
Thank you Quietcook. I am trying to educate ourselves on this topic. We have been doing lots of research since last June on the non-surgical options available for my daughter. We have consulted with two other pediatric orthopaedic drs so we have a total of three opinions, all concurring that surgery is very reasonable based on her symptoms. We are aware that this surgery will most likely cause degeneration as she ages. Her dr. hopes she can get into 30s before this happens. She has tried rest, two rounds of PT, and wearing a brace for three months. About a month ago she began having tingling in her foot. So when we went to see her dr. last week we knew surgery was going to be our last option,especially now that the nerves are involved.
It was the addition of the stenosis that threw me off yesterday. I'm not as familiar with this condition and the procedures that will be done in addition to the fusion. From the research that I have done today I see that stenosis can be caused by the spondylolisthesis as well as the aging process. Like you I also spoke to a mother of a patient that had the fusion, but not the decompression. Her surgery was very successful and she is able to live an active life again.
Thank you for the encouragement. Any other suggestions or questions that I need to ask the dr. are welcomed.
Hello. I don't typically post on these forums but after seeing your post I felt compelled to reply and hopefully give you accurate advice based on my experience. I am a 26 year old female with congenital spondy (grade 2). After trying conservative methods for 6 months, the nerve pain (mostly sciatica) was very much restricting my everyday functions. Three weeks ago, I had a L5-S1 fusion (with instrumentation) and decompression. It's very normal to do these two operations together particularly when a fusion is involved. The fusion is done to stablize the spine and prevent any further slippage (caused by the spondy which causes the vertabrae to shift against one another and against the nerves). The decompression is done to remove any fragments compressing the nerves and causing nerve pain. Therefore after the fusion, the nerves are completely free and won't be compressed and causing pain anymore. Two surgeons performed my operation (the orthopedic did the fusion and the nuerosurgeon did the decompression).
Re/ the sugery. I will be honest and say it was long, intense and I had a great deal of incisional pain for the first 10 days. I can now (after only three weeks) walk nearly 2 miles, get around pretty well (albeit slowly!), and feel so incredible compared to pre-surgery. I highly recommend having a fusion with decompression done if you have spondy. Please feel free to email me with any questions as I'm happy to help in any way I can. It's a very scary situation to face but I feel confident that it is the only fixture for the spondy condition.
Take good care,
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Last edited by moderator2; 02-16-2005 at 07:14 PM.
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Thanks for your story, Peggy. I too have just recently begun posting here when I saw a few posts about teenage spondy. You are very young also to have this surgery. My daughter's story seems very similar to yours, except that she is younger. It has come to the point over the past 18 months of conservative methods that she has lost the normal life of a 15 year old because anything she does causes pain. She has been out of all HS sports since Aug. of '03. She is very frustrated right now. Because of school and not wanting to miss finals, we're trying to schedule this for June as soon as she's out of school and will have the whole summer to recover.
I'm glad to hear that these two procedures together are fairly common and that you are doing well. Her dr. did warn us when we spoke about the fusion that the first month would be very painful and she'd be on narcotics for a while. I certainly hope that she is able to get the same outcome as you have so far. Thank you for sharing and I wish you the best with your recovery! You have helped to ease my mind some.
My spondy was between 1 and 2, but the stenosis was severe. Everytime I bent or twisted I got a locking pain in my butt. And walking brought on tingling and numbness in my legs. I think laminectomy and decompression are the same thing. Anyway, my stenosis was reduced and the spondy was stabilized at grade 1 and I'm moving/walking with no problem. And I was 63.
Just about everyone that i have talked to or chatted with online,said either there surgery didn't help,or it helped,then a yr. later they were worse.Please,don't think i was trying to creep anyone out,just that the majority[including my doc.] of peaple i've talked to suggested to me to wait as long as i can to get fussion done.Like i mentioned,my niece had some kind of mesh cage put around here spine 10 yrs. ago,then about a yr. ago they took that out and put in two titanium rods in,she said she wishes she never got the first operation done.I asked my doc-"if i get the fussion done,say 3 yrs down the road something goes wrong etc.. wouldn't the fussion limit any future repairs"? He said yes.Then he wqent on to say,were did you hear that? Almost like he was surprised that i asked that.example,compare the success rate in heart surgery,or any surgery,to a back surgery.I.M.O theres just
so much that can go wrong when it comes to back surgery.And just the fact that a few doc. i have seen over the last 2 yrs. suggested i wait as long as i can to have it done,tells me theres great risk invovled.I'm in a lot of pain every day,but not until they can garantee everything will go all right,i won't get it done. I know theres risks in any surgery,but I.M.O theres just to great of a risk in back surgery.
I was in the hospital 4 days with my surgery and was on Percocet and Robaxin (muscle spasms) for 10 days post-surgery. For me, it was the first two weeks that were the most intense pain-wise. It helped tremendously to have my parents take care of me. I also found that you MUST use your leg muscles and not attempt to use your back muscles for sitting, bathroom, etc. until there is more movement in your back. After the initial couple weeks, the incisions began to close over and the back spasms stopped and I'm now able to get around fairly well. That being said, it is still going to be about 2 months before I return to work and I still require much help from my parents as certain activities (lifting, bending) are restricted until the 3-4 month mark.
The clear indication that fusion/decompression is needed is when the nerve pain starts. I had such bad sciatica that it was interfering in all aspects of my life (and, like your daughter, I'm far too young to not be able to enjoy working out, outdoor activities, etc.). If I could offer one more bit of advice that helped me ... I found that I had to let go and trust my surgeons and also that my mental state is/was key to recovery. There are some days that are just tiring and discouraging BUT the tremendous relief I felt post-surgery (no more nerve pain) makes it all worth it. I typically don't pay much attention to these posts as you will find that people LOVE to share their negative experiences. But remember over 200,000 fusions are performed each year and the success rate is around 80% which is a fabulous odd for medicine. It's just vital to FOLLOW directions and really allow your body and mind the time it needs to heal. And only surround yourself with positive and supportive people!
I hope this helps. Again, feel free to ask me any questions. I know how scared and concerned I was pre-surgery and I also know what has been helpful for me post-surgery. I wish your daughter much success - being young is great for healing!
Peggy, thank you so much for all of your advice. It is great to know what to expect. I think she'll have a few months until the surgery, but all the knowledge we can gain is very helpful. Even though you'll be healing pretty well by June, I hope you'll still be visiting from time to time.
My daughter is so glad to read your post and hear the positive results of surgery. She is hearing many tell her, don't think about surgery and that's hard to take. Now that the nerves are involved we feel she doesn't have a choice. We're waiting for a surgery date from her dr. and are hoping that it's June. Thanks again for all of the advice. You are another great resource and we are greatful for your info. When you said to put trust in your surgeon, she has done that. She really loves her dr and is very comfortable with him.
We wish the best to you with your recovery. Keep progressing.
I'm not so sure that was a fair statement to make. I just had (in september,2004) a revision of my fusion that was done in january 2001. That fusion worked well for 3 years until I fell at worked and knocked a few screws loose. I am now almost 5 months post-op and do not consider this surgey a success, yet. But I'm still holding out for hope. But I do NOT LOVE to share my negative experiences, but I do like to come on here and get a little encouragement and support from time to time. And believe it or not but some people appreciate hearing both sides of possible outcomes.
Granted I do believe the are more positive outcomes than negative, but please don't make such a broad statement that makes it appear that we are like the old saying misery loves company.
I hope your daughter has a wondeful outcome from her surgery and I'm sure she will do fine. If my dr told me tomorrow I needed to redo the fusion once again, I would do it in a minute, if there was a possibility it would make the pain better.
While I appreciate your thoughts, I feel my situation and statements are accurate. I do not reply to these posts for the very response of your post! Please allow my experience and advice to caszyman be just that. I was only talking and responding to her and not soliciting other responses to my post. Please respond to her only and not to me as I have no interest in any negative experience or in being berated for my experience of my thoughts (as experiences and advice is subjective so in no way do I want to start a debate with someone else). That was the exact reason I stopped looking at these posts pre-surgery and I simply wanted to give a worried mother a bit of piece of mind by relaying my successful experience. Please do not reply to me.
Peggy, If I am not mistaken, you were doing the exact same thing to madhatter, as he/she were only offering their advice. It was not my intention to offend you or anyone else. And I do agree that fusion can be very successful, as I had 3 good years after my first one. My only point was to say that these boards are not just for success stories but for all who need it. And I do not think I berated anyone, but as you put it so well, I do not wish to debate this either. I hope you did give Caszyman some piece of mind as I would also like to do that myself.
I do also think it is wise for people to know this a long hard process, and may take longer than you might expect, as it is in my case. I just don't want people to be discouraged when in 2 weeks time they are not back to normal.
And I do not like to be berated myself and did not think that was what I was doing, but when someone attacks me, don't ask me not to reply to you. If you wish we can end it here, but I will not tell you not to reply to me, because you have as much right to as anyone else does.
I have read your post about your daughter and really feel for you both, I had my first surgery at 22,27,29,34,and 34 again. I think had I found the fabulous doctor I have now back then I would be alot better off. I had a long history of back problems, was always in dance, gymnastics, etc. and then had all these problems occur. Too bad I did not have this doc at 22 instead of 34. Anyway, I have 3 little boys and can not imagine them going through this. I would find the BEST doc in the world and try to put an end to their pain. I did last month have a decompression for stenosis, I could not even sit for 10 minutes before the pain was unbearable and it has relieved some of that. But my fusion was 6 months prior at a different level, otherwise the two would have been done at the same time. I am 34 and not a teen. We all know kids heal MUCH better then we do I hope ya'll find a resolution to her pain as well as yours( I think it hurts moms more then our babies to see them hurt ) Here is warm thoughts and prayers to you and your daughter
I thank all of you who have given me insight to the surgery for stenosis. This info has helped the two of us.
I agonized with the question of not wanting her to have surgery since last summer. I certainly didn't want to see my daughter have back surgery, but that is no longer a question for us since her nerves are involved.
Like you Shelley, my daughter was a dancer and I think it was the one month of dancing with dance team and running hurdles and high jump that worked her condition up. I suppose it would have given her problems years down the line. I feel bad that you have had so many surgeries at such a young age. I hope this will help her avoid a few in the future. We feel that she is being taken care of by excellent drs. and have put our trust in them.
Peggy, thank you for sharing your current surgery and recovery with us. It sounds like what she will go through. I do agree with your advice about keeping a positive attitude. I wanted to call her dr and ask some more questions yesterday, but felt like I'd just cry talking to him (and I'm not the patient). I'll wait until next week.