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Old 01-30-2005, 05:55 PM   #1
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teenager with spondylolithesis

Looking for any information and help we can get. I have a 13 year old son with grade I spondy. He was first diagnosed two years ago. No problems or pain for two years and then complained of pain. He was diagnosed with spondylolithesis grade II in september and fitted with a brace. This helped bring the spondy to Grade I inside of two months - but the pain is still awful. He is now having a flare up - still GRADE I spondy but a lot of pain. Surgery is now being discussed. Anyone have a similar experience. It would be spinal fusion of L5-S1 - Any comments would be welcomed.

 
Old 01-30-2005, 09:37 PM   #2
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Re: teenager with spondylolithesis

Hi there,
I suffer from Spondylolisthesis. It's terrible to hear that your son is having such a difficult time with this at such a young age. I've been suffering with this for over 2 years along with sciatica, lumbar lordosis and a pars fracture. It's not fun and very painfull at times. Has your son tried physiotherapy? He's so young so I would be leary to say surgery is the answer. I'm 23 and my surgeon doesn't want to operate without exhausting all non surgical procedures. Has your son had any injections done? There are many options and procedures to try before considering surgery. You may also want to get a second opinion. But mainly I would suggest physio. His therapist should be able to suggest some good strengthening excersices and do some good therapy that may give him some relief. It certainly won't fix the problem but it may give him enough relief to be able to get through each day. Good luck with everything and please keep me posted with what goes on. Take care. Kristy.

 
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Old 01-31-2005, 03:38 AM   #3
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flyonthewall HB User
Re: teenager with spondylolithesis

What led to his even being diagnosed at that age? My back was fused/stabilized at grade 1 spondylolisthesis. But I'm 64. My orthopedist has a spine fellowship.
fly

 
Old 01-31-2005, 06:07 AM   #4
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Re: teenager with spondylolithesis

He had pain at the age of 11 - he was diagnosed then.
After two weeks of rest all subsided - then this past summer
pain increase and we returned to the doctor
then it was spondylolithesis

 
Old 02-03-2005, 05:35 PM   #5
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BobiM HB User
Re: teenager with spondylolithesis

[QUOTE=timma182]He had pain at the age of 11 - he was diagnosed then.
After two weeks of rest all subsided - then this past summer
pain increase and we returned to the doctor
then it was spondylolithesis[/QUOTE]


My son was diagnosed with spondylolisthesis at age 16. They say it was congenital and some people have problems with it and others don't. My son always had some back problems but he was able to get away without surgery until now. He is now 35 years old and has surgery scheduled for April 14. His pain kept getting worse as the years went on. I hope your son will get some relief from his pain so he can avoid surgery for a few more years anyway.

Bobi

 
Old 02-05-2005, 05:40 AM   #6
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Re: teenager with spondylolithesis

Can someone please explain why the reason to delay or wait for surgery. My son has been in pain since August - we have tried all conservative methods. They have reduced his slippage to grade I but his pain still persists. Every few weeks he has about 10 days of very severe pain. He is thirteen years old and is growing. We think this is causing aggrevated pain also. Would'nt a spinal fusion help reduce the pain. I am new to all this - why the great advoidance towards surgery.

 
Old 02-05-2005, 06:49 AM   #7
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Re: teenager with spondylolithesis

Hi,
I am going through this same problem at the present time with my 15 year old daughter. She was diagnosed with congenital spondy at the age of 11. She was a very active and athletic child, a dancer, soccer, volleyball, hurdles and high jump, and an avid snow and water skiier. She was relatively pain free for most of her middle school years and was a grade I spondy. If she ever had any problems her ped ortho would have her rest for two weeks and things would calm down.

During the summer of her ninth grade she made the dance team. From dancing daily for a month she really aggrevated things and her doc made her immediately stop dancing and all activity. We have been doctoring this for 18 months now. He tried rest, three months of physical therapy, we continued working out at the Y, and have just finished three months of bracing along with six weeks of physical therapy to build her back up.

Surgery was first discussed last June - a fusion of L5-S1. I got two other opinions from pediatric orthos and each agreed that even though she is only a grade II her symptoms warrant surgery. I think that we have tried every non-surgical option at this point. She is unable to participate in any activities and is in constant pain - lower back and hamstrings. We go for her next eval on Tuesday. I think we're now at the point of surgery.

I wish the best to you. This has been a really hard road the past 18 months for us. It really hurts as a mom to see your child not be able to do anything without being in constant pain. (Sorry my first post is soooo long.)

 
Old 02-05-2005, 07:03 AM   #8
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Re: teenager with spondylolithesis

I guess the main reason we are trying to avoid surgery is that her ped ortho explained to us that once a level is fused there is a greater chance of the disc above or below degenerating in the future. He was hoping that following surgery she could be ok for the next twenty years before her back would again give her problems.

To complicate matters she pretty much refuses to take most pain meds. Two Aleve do not touch her symptoms any longer. We've tried Bextra which really seemed to work for her, but she may have been getting the mouth problems that they are now warning about. Even though her doc says the Celebrex would be ok for her, she won't take it. Since Aleve has been in the news she's refusing to take that. So we don't have much to help the pain at this point. She takes a lot of baths and uses the heating pad.

 
Old 02-05-2005, 07:21 AM   #9
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Texmom HB User
Re: teenager with spondylolithesis

[QUOTE=timma182]Looking for any information and help we can get. I have a 13 year old son with grade I spondy. He was first diagnosed two years ago. No problems or pain for two years and then complained of pain. He was diagnosed with spondylolithesis grade II in september and fitted with a brace. This helped bring the spondy to Grade I inside of two months - but the pain is still awful. He is now having a flare up - still GRADE I spondy but a lot of pain. Surgery is now being discussed. Anyone have a similar experience. It would be spinal fusion of L5-S1 - Any comments would be welcomed.[/QUOTE]


My son was 14 when diagnosed with a Level III Spondy. He had a 360 fusion and today, this very day, will be starting second baseman on his high school JV baseball team. There IS life after spondy, but first and foremost you must find the right surgeon.

Quite frankly, I do not understand how bracing can possibly achieve reduction. Since spondy is the result of a fracture of connective bone, there is nothing there to "hold" it in place.

Where do you live? Our big problem was finding a surgeon able and willing to perform surgical reduction. Most pediatric orthopods only wanted to do an in situ fusion, which would have resulted in him being permanently deformed and would have caused him spinal problems for the rest of his life. This is because they fear doing reductions because they are using antiquated, almost medevil, techniques. When using hooks and pulleys to acheive surgical reduction, there is a great risk of caudia equina, which can result in paralysis, incontinence, and in young men, PERMANENT STERILITY. So, that's why I asked you where you live. There are excellent orthopods out there doing much safer and effective surgery, but finding them is not easy.

Just so you know, I counsel parents of kids with spondy as a result of my experience. Please respond, I'd be happy to help you.

 
Old 02-05-2005, 09:29 AM   #10
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caszyman HB User
Re: teenager with spondylolithesis

Texmom,
You brought up a great point. I'm pretty sure that our ped ortho is talking about working on reduction. My daughter's PT talked to the dr last week and that's our understanding. That will be an added question on my list for our evel on Tues.

The bracing done on my daughter didn't bring a reduction. We tried it to see if the brace would reduce the pain caused by the nerves. This was our last non-surgical effort. I was under the understanding that the only way to reduce is by surgery. ???

Two surgeons that I have talked to have said no restrictions post surgery. Your son is a tribute to that. Our surgeon isn't ready to say she'll be able to dance and do hurdles again, but even if she could do some activities that would be a lot better than doing absolutely nothing as she is now.

How was your son's recovery period post op? I've been told that ped patients tend to heal faster. One surgeon was suggesting anterior and posterior approach. Two were talking post. Our surgeon is talking posterior.

Thanks

Last edited by caszyman; 02-05-2005 at 09:35 AM.

 
Old 02-05-2005, 09:56 AM   #11
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Texmom HB User
Re: teenager with spondylolithesis

[QUOTE=caszyman]Texmom,
You brought up a great point. I'm pretty sure that our ped ortho is talking about working on reduction. My daughter's PT talked to the dr last week and that's our understanding. That will be an added question on my list for our evel on Tues.

The bracing done on my daughter didn't bring a reduction. We tried it to see if the brace would reduce the pain caused by the nerves. This was our last non-surgical effort. I was under the understanding that the only way to reduce is by surgery. ???

Two surgeons that I have talked to have said no restrictions post surgery. Your son is a tribute to that. Our surgeon isn't ready to say she'll be able to dance and do hurdles again, but even if she could do some activities that would be a lot better than doing absolutely nothing as she is now.

How was your son's recovery period post op? I've been told that ped patients tend to heal faster. One surgeon was suggesting anterior and posterior approach. Two were talking post. Our surgeon is talking posterior.

Thanks[/QUOTE]

Yes, reduction is achieved only by surgery. There is a new device being used to achieve the reduction. It is made by the German medical device company, Braun. It literally clicks the spine back into place and reduces the chance of nerve damage astronomically. The problem is that many surgeons are unaware of this and are still using hooks and pulleys!

My son had a 360 fusion which was achieved posteriorly. The surgeon had a thoracic guy on standby ready to go in case he needed to do an anterior posterior but was able to accomplish the 360 by posterior entry only, which, of course, makes recovery vastly easier. On the subsequent surgeries he's done on other teens I know, he's been able to do the same thing.

The fusion was acheived with a graft made from my son's pelvic bone (and a little spackling paste!). I know some guys like to use cadaver bone but my anecdotal observation is that pelvic bone fusion seems to work better. My son did not have discomfort from this, although some patients do.

The recovery period is perhaps the trickiest for a teenager. There is NO activity permitted except walking (and normal sitting) for about 6 to 9 months, during which time the patient wears a hard plastic TLSO brace. After 9 months, aquatic rehab was introduced for about 6 to 8 weeks. Then he resumed his life AFTER the surgeon gave him clearance, so about 10 months post surgery. But remember, this was a highly conditioned athlete who had been running 3 miles a day prior to surgery. Teens who are less conditioned that I know take a little longer to heal, and their immediate post op was not as easy as my sons.

As for "no restrictions", that is true, for the most part. There is NO football, NO overhead weightlifting (which my son tells me is wasted motion anyway, lol), no bungee jumping (I know, I know, but the surgeon was smart to enumerate this, you know how teens are).

I know a young woman who had spondy surgery prior to my son by several years. She wound up having to have a far more radical surgery, for a variety of reasons, but SHE IS HAVING HER FIRST CHILD NEXT WEEK! So, there is life after spondy, it's the getting there that's a little scary!

 
Old 02-05-2005, 10:16 AM   #12
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Re: teenager with spondylolithesis

Thanks for any and all responses. He has had no -NO - physical activity now since August. Was very active before and athletic (do we all see a common connection) It makes it harder when they do loose the activities they love and are in such pain.
We are very happy with our Doctor - he is a ped spine specialist in Manhattan. I just seem to hear more positive about outcome of spinal fusion at this age - I am anxious. I would like to see him begin a better frame of life. He cannot walk far now without pain and this keeps him home alone quite a bit. He has turned into a great guitarist (thank goodnes) and we have a band in the basement - but I am concerned about him just being tied to the house all the time due to this. Thanks for listening

 
Old 02-05-2005, 10:30 AM   #13
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caszyman HB User
Re: teenager with spondylolithesis

Thanks Texmom for all of the info.

This sounds very similar to what our surgeon is talking about. He said he can get to the front of the spine through the back opening. He also uses the bone from the patient's hip. As everyone in this situation I have been dooing a lot of reading about this topic and do know that it is a year long recovery process. We had our first surgery date of Aug '04, but that's when we decided to try one last option of bracing. I'm hoping that the dr will be able to put it off until the beginning of June when school is out. I figure then she'll have almost a three month recovery period at home. It will also be a lot nicer in Michigan so she'll be able to walk in our neighborhood. The only thing that will upset her is that I think her water skiing days and dancing days are over - her two favorite loves. We have also talked to drs in Dallas, but I think we'll stay home for the surgery. It would be hard to gone from home for a month before we could fly back. More decisions.

You are a great resource. I'm sure I'll have many more questions after dr. apt on Tuesday.

Timma182, it's great that your son has grown to love the guitar now. My daughter had to move from high school athletics. So she is the historian of her class and does a great job of scrapbooking now, but it's not the same as being as active as they once were.

Last edited by caszyman; 02-05-2005 at 10:52 AM.

 
Old 02-05-2005, 04:46 PM   #14
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Texmom HB User
Re: teenager with spondylolithesis

[QUOTE=timma182]Thanks for any and all responses. He has had no -NO - physical activity now since August. Was very active before and athletic (do we all see a common connection) It makes it harder when they do loose the activities they love and are in such pain.
We are very happy with our Doctor - he is a ped spine specialist in Manhattan. I just seem to hear more positive about outcome of spinal fusion at this age - I am anxious. I would like to see him begin a better frame of life. He cannot walk far now without pain and this keeps him home alone quite a bit. He has turned into a great guitarist (thank goodnes) and we have a band in the basement - but I am concerned about him just being tied to the house all the time due to this. Thanks for listening[/QUOTE]


You're welcome. Is your doctor using the Braun device? Is he using instrumentation? There are many docs out there who are still using casting, where your child will be in various body casts for 6 months. I have found that not to be necessary.

 
Old 02-05-2005, 04:51 PM   #15
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Texmom HB User
Re: teenager with spondylolithesis

[QUOTE=caszyman]Thanks Texmom for all of the info.

This sounds very similar to what our surgeon is talking about. He said he can get to the front of the spine through the back opening. He also uses the bone from the patient's hip. As everyone in this situation I have been dooing a lot of reading about this topic and do know that it is a year long recovery process. We had our first surgery date of Aug '04, but that's when we decided to try one last option of bracing. I'm hoping that the dr will be able to put it off until the beginning of June when school is out. I figure then she'll have almost a three month recovery period at home. It will also be a lot nicer in Michigan so she'll be able to walk in our neighborhood. The only thing that will upset her is that I think her water skiing days and dancing days are over - her two favorite loves. We have also talked to drs in Dallas, but I think we'll stay home for the surgery. It would be hard to gone from home for a month before we could fly back. More decisions.

You are a great resource. I'm sure I'll have many more questions after dr. apt on Tuesday.

Timma182, it's great that your son has grown to love the guitar now. My daughter had to move from high school athletics. So she is the historian of her class and does a great job of scrapbooking now, but it's not the same as being as active as they once were.[/QUOTE]

I am available for any help I can give you. Our biggest nightmare was actually dealing with the school district. They tried to kick my son out of all of his advanced level classes in exchange for the home schooling service. There is federal law that requires them to provide a proper education for handicapped students, and an orthopedic impairment is specifically mentioned in the legislation as a "handicap" (albeit a temporary one!). My son wound up having to teach himself all and his homebound teacher just used to deliver work and proctor exams. I am a lawyer and I would have sued the district if it was going to be a long term thing. As it turned out, my son was able to get his work done in a few hours a day and wound up getting his best grades ever while he was teaching himself!

 
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