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Old 11-18-2012, 04:46 AM   #1
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Spondylolisthesis questions (teen)

We have been chasing hip pain in my daughter (13) for a couple years. Tried almost everything, until a week ago when they did spine x-rays and showed a pretty significant slip in L5 (about 50%). We are waiting to see a pediatric spine specialist. I am hoping that anyone who has been through this can shed some light on some of the millions of questions I am thinking about every minute of every day.

I have ready tons on spine movement... but not many things I read differentiate between movements that may cause the initial injury, movements that make it slip more, and movements that can or can't be done if you have fusion surgery. I know that trauma, gymnastics, football, etc. can cause the injury or repeated stress that can weaken the vertebrae, but can just falling on your butt on a gym floor cause it? Can having someone else fall on your back do it?

And after the condition is there (from injury, overuse or congenital) what movements make it slip worse? My daughter went through physical therapy about 6 months ago and we are wondering if that may have made things worse. She is also serious in to softball and has been training hard... swinging, pitching, etc. Or does it really just depend on growth and body changes to slip further or not?

And if she has to have L5-S1 fusion, what does that mean for softball? Has anyone on here had that and played softball afterward?

We are also going to have to wait a couple weeks to see the Dr. Other than NOT doing any softball or workouts, is there anything else she should not be doing? I am guessing since I have read that many people live with 50% and greater for many years until they finally decide to get surgery, that the spine will not just slip on it's own... as long as she does not do anything that puts her in a position to get hit or twist, etc. waiting the couple weeks should not be a problem, right?

Any info you can provide would be greatly appreciated.

 
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Old 11-18-2012, 07:24 AM   #2
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Re: Spondylolisthesis questions (teen)

Welcome to the board. Before I attempt to answer at least some of your questions, I would like a bit more information.

Does your daughter have any neurologic symptoms such as pain in the buttocks or running down the leg? Any tingling or numbness? How long have the symptoms been going on?

 
Old 11-18-2012, 08:12 AM   #3
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Re: Spondylolisthesis questions (teen)

She has had pain in her hip (left side rear; around top of butt) for a couple years. They had looked at everything about the hip... bones, muscles, etc. Found nothing. It is sore when she wakes up in the morning... and she limps a bit because of it. Interesting thing is that when she is running, playing softball, pitching, batting, etc. she said it does not bother her at all. She does have what she calls pain in the leg... front of thigh and back of calf when she flexes her foot certain ways... no pins, no needles, no tingling... no sharp pain that would be associated with nerves. The Dr had done full evals on her and it did not appear to be nerve issues. I have read that Spondylolithesis causes symptoms of tightness in hamstring... butt pain, etc... and am wondering if those basic symptoms are simply translated pain and stiffness because of changes to muscles and movement and not nerve related at all, or if all spondylolithesis pain is caused by nerve issues.

Last edited by flyguy1; 11-18-2012 at 08:13 AM.

 
Old 11-18-2012, 12:12 PM   #4
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Re: Spondylolisthesis questions (teen)

It wouldn't be hurting in the hip or leg from spondylolisthesis unless the message is being carried along the nerve from the spinal nerve being compressed at L5-S1. If nerve compression were severe, she would develop numbness, or at least tingling, or electric shock type feelings that would shoot down the back of the leg.

I'm glad you are seeing a pediatric spine surgeon because I imagine your daughter is not finished growing. Most people don't have that luxury.

I really can't guess what the surgeon will want to do. 50% is iffy in terms of whether to perform a fusion or to treat conservatively...a lot will depend on the physical exam and neurologic exam, I think. And it will be very relevant to determine whether there is still movement going on with the slippage. I just noticed she is 13 -- I was thinking she was 16 or 17...so of course, she is still growing. This will make a difference in how her spondy is treated.

I only had a grade I spondy, but my nerve compression was severe, so I had two choices: live with it or have a fusion. And living with the pain wasn't a long-term option as the nerves would eventually have died and I might have ended up in a wheelchair. But I did put it off two years.

I would just be speculating to suggest answers to your questions. Athletes can and do continue on with their sport after fusion. At least soft ball doesn't require a lot of bending backward which is something your daughter must avoid.

Last edited by teteri66; 11-18-2012 at 12:31 PM.

 
Old 11-18-2012, 12:29 PM   #5
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Re: Spondylolisthesis questions (teen)

I will try to answer some of your questions. Your daughter will not hurt anything by having to wait. It would be an extreme case to have something go so far wrong that it would cause serious injury (paralysis).

She should avoid any activity that puts her spine in extension. This would include anything where the back arches -- certain yoga postures, diving, gymnastics, swimming on the stomach, etc. Until she sees the spine specialist, she should probably avoid most or twisting, even forward bending until you know precisely what is wrong. She should try to maintain good posture, especially when sitting, and she should avoid sitting for more than a short time before getting up and moving around. Sitting puts 30% more pressure on the discs that standing or lying down. After a fusion most of us are told not to sit for more than about 15 minutes at first...but most people should get up and move at least once per hour.

I assume your daughter doesn't smoke....She probably eats healthy since she's an athlete... encourage her to drinks lots of water. She will want to keep her discs as healthy as possible now and in the future.

It may be that the facet joint at that L5-S1 level is affected. That can cause pain in the morning that gets better as one moves around during the course of the day.

 
Old 11-18-2012, 03:07 PM   #6
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Re: Spondylolisthesis questions (teen)

Teteri,

Thank you very much for your input. When I saw the x-ray I have to say it was the most frightening moment in my life. Especially seeing a vertebrae half off the one below it... and at that point in the spine where it is already curved and the vertebrae are tilted already... L5 is tilted even more. It just seems to someone like me who is not a Dr, that if you jump the wrong way it will slide off... but I have come to understand that the muscles and tendons that support the spine are very strong, and although not a good thing to have, it is hopefully not as delicate as the x-ray makes it look.

We are concerned about how she got it... My understanding is that it could have been as simple as a hard fall on the tail bone to start the process... or it could be a defect she was born with, or overuse, etc. I wonder if the Dr will be able to know how it was caused from the MRI and x-rays.

So many questions... and waiting for answers is very tough.

 
Old 11-18-2012, 03:38 PM   #7
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Re: Spondylolisthesis questions (teen)

I kind of doubt they can tell you how she got it...if everything else in her spine is OK, I would be a little surprised it is something congenital...but I'm not a doctor, so am just going on what I've read and what I've been told as it relates to my own condition. (In my case they think it is degenerative, but could have been something I've had all along and it was just asymptomatic for most of my life. I spent my younger years training in figure skating ...obviously fell a cazillion times on my tailbone...so it could be from that too...no one could tell me when, just that I had a spondy....)

I can imagine it was a shock to see, as I would guess the rest of her x-ray looked fairly pristine and perfect...and we are used to seeing the bones line up neatly in the photos....

 
Old 11-20-2012, 09:44 AM   #8
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Re: Spondylolisthesis questions (teen)

Well, the MRI report has graded it at 2... but I am guessing it is on the high end of 2. Pars defect of L5 bilaterally... which I expected... and my understanding is happens first and then allows it to slip. The key to knowing it is what is causing my daughter's discomfort is that it says severe foraminal narrowing on left side due to spondylolithesis... with suspected mild neural compromise.

So, now I am wondering if there is any physical therapy that could strengthen her muscles and possibly reduce the slippage or narrowing where the nerves are being irritated... or whether the only way to remove the nerve irritation and prevent further progression of both slippage and nerve irritation is surgery.

 
Old 11-20-2012, 10:46 AM   #9
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Re: Spondylolisthesis questions (teen)

50% is the dividing line between grade 2 and 3.

Yes, the pars defect comes first...it can be from overuse, an injury, etc. Then as the person continues on with the activity it can gradually "slip." There are other reasons it can slip as well. Sometimes it doesn't happen for decades...

The problem for your daughter is that it is causing severe stenosis in the foramina on the left side. In radiology language, there are words that are used as a ratings system: minimal, mild, moderate and severe. Minimal and mild issues are overlooked. Moderate can go other way, but severe sometimes means that a surgical procedure will be necessary to decompress the nerve.

Sometimes PT can help. It all depends on the issue, the location, etc. If it were a bulging disc causing the narrowing, chances are it could be allowed to heal naturally and that injections and therapy would help.

Stenosis is a bit more tricky, particularly in this case where the "slip" is causing the narrowing, and it is unlikely to slip back to reopen the space. But the doctor won't know until he does a neurologic exam and correlates it with the findings from the EMG and MRI/CT scan....

 
Old 12-04-2012, 08:11 AM   #10
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Re: Spondylolisthesis questions (teen)

Well, we visited the first of three pediatric spine surgeaons we are going to talk to... he basically said that the slip is grade 2 on the MRI since she is laying down... but slightly over 50% on the XRAY since she is standing. He said that is actually good, since it is a sign they would probably be able to reduce the slip a little during surgery. He basically said that we are in a "proactive" time frame right now... we can either wait it out and if it slips more, may be not get as good a result from surgery... or we can be proactive and have surgery now and she could be symptom free and back to full sports participation in 6 months (my wife and I were almost in tears to learn that she would be able to continue participating in the sports that she loves after surgery; this was a big concern for us). He said that in adolescents, a high grade slip is almost always from a congenital condition... not some trama. And that they almost always progress... if she was 10, he would say there is almost a 100% chance it would progress... since she is 13 and has only another 12-18 mo of growth time, he said the chances of progression may not be 100%, but they are definitly greater than 50... and in the state it is currently in, she would have restrictions on activity for the rest of her life... and the pain would not get better, and possibly get worse. A 50% or greater slip can also cause complications later in life for things like child birth, etc.

He said the procedure would be basically 5 steps... decompression, disc removal (her L5/S1 is bulged out and a mess), flattening of S5 (it is rounded over... a result of the slip over time), reduction to a level that does not involve a lot of risk (not all teh way to normal but hopefully grade 1), and then fusion. The fusion would involve bone, screws and possibly a cage. He would decide whether it was just L5/S1 or L4/L5/S1 based on what he saw during surgery... and make the decision that would give the best outcome without creating the need for a second surgery 5-10 years down the road. I did not ask details yet about the procedure... still trying to get our wits about us from the new yesterday... and compile more questions. I am sure my daughter will be concerned about scars and how large or visible they would be...

And we are concerned about the risks and complications of surgery... and weighing them against the risks and complications of not having surgery. He said there is usually some pain in the leg and issue raising the toes for a few days after surgery... this is normal and usually resolves quickly... he did says that in some small number of cases it does not resolve. I really want to understand any other risks of this surgery... and how they monitor nerves during surgery... I read that some surgeons use the "wake up the patient and move your legs" method... that seems archaic... and others use automated monitors that are constantly monitoring for any nerve issues...

As we continue to gather information and try to make the best decision for our daughter, I would greatly appreciate feedback from anyone who has been through this... as a parent or a child... and anything you learned along the way.

 
Old 12-04-2012, 10:39 AM   #11
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Re: Spondylolisthesis questions (teen)

I would encourage you to take the time frame with the attitude that it may be a bit optimistic...meaning it may take longer to recover to the point that she could fully participate in sports. with a spinal fusion, even though you may see signs of bone growth as early as three weeks, and the fusion may be "complete" at four to six months, it takes a full year for the bone to set up to the point that it is fully hard and strong.

Did the surgeon indicate whether he would do this "minimally invasively?" Or did he mention if he would go in from the back, front or side? You would need to know that before worrying about the size of a scar. I think with a spondylolisthesis the posterior approach is the norm...but perhaps there are new techniques that I am not aware of. I've had posterior surgery three times using the same incision, from L3-S1, and my scar is about 4" long and is well below my waist. I suppose it would show if I wore a two piece bathing suit...again, being so young, I would imagine it would not be that visible in a couple years.

Trying to bring the spine back into alignment is where things can get a bit dicey. I imagine that your daughter is young enough that the body is still flexible enough that it can absorb this change in structural alignment without causing additional issues.

As with any procedure involving a general anesthesia, there is a risk...but the new anesthetics make it all so much easier. They can put you to sleep and wake you back up almost instantly. The surgery is a big surgery and the first several days are bad, but they will be able to keep her pain under control, and again, due to her age, I assume she will bounce back faster than the adults that post on boards like this.

Even though nerves are monitored during surgery, it does not guarantee that there could be a problem --you never know to what extent there may already be some nerve damage and if so, whether it will go away post surgery. And there are those rare circumstances where something occurs during surgery -- but I think one has to just accept that while there is a slight possibility, chances are overwhelmingly in her favor that it will all turn out well.

The option is living with the pain...which down the road means she probably won't be able to play sports. If it were another issue, you might hope that things could improve with time...but that doesn't happen with spondy. She could remain the same, but chances are good that things will just get worst...maybe gradually, perhaps very quickly. And personally, I think a person can wait too long to have the surgery. I believe that if I had agreed to surgery sooner, I would not have the degree of numbness in my feet that I live with today.

Was your appointment with a neurosurgeon or an orthopedic spine surgeon?

I'm happy to try to answer your questions. I've had the same surgery...my spondy was Grade I. Both my fusions were from the back...the first was with rods, pedicle screws, a cage and BMP. The second fusion was adding on to either side of the first surgery. The discs were left in place, rods and screws were removed and longer rods used in their place. The first surgery was done for the spondy. I don't think they attempted to correct any listhesis with the "add-on" fusion. The only main difference would be in our ages!

This surgery sounds horrendous, but it is less intensive than a surgery for scoliosis would be.

 
Old 12-04-2012, 05:20 PM   #12
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Re: Spondylolisthesis questions (teen)

I do not know the details about the actual approach... I will be asking those questions, and others I am compiling, of all the doctors we talk to. The Dr did not seem concerned about waiting a few months to do the surgery... You said yours was from L3 to S1 and the incision was only 4"? That's pretty small. Do they make the incision vertical or horizontal?

I understand what you are saying about 6 mo being aggressive... things I have read do say that once the fusion is set, movement and flexing actually helps the bone and fusion get stronger... so I am guessing that the best thing would be slowly getting back to normal activities after the 6 mo mark... and planning to not be at 100% until the year mark... assuming the Dr. agreed that everything looked good at 6 mo. I am curious what the other Drs we talk to will say.

As far as pain limiting her now... it really does not... she walks with a limp to compensate and take weight off that side and it hurts more in the mosning when she wakes up from sleeping on her hip and back, but when it comes to running, sliding, throwing, sports, etc. she always has said it feels better when she is active and it has not impacted her at all in that way... and she has never had pins/needles... just what she calls "pain."... which the Dr also said was a good sign, since pins/needles is supposedly a sign of worsening nerve irritation. No strength issues... no reflex issues... But I agree, that it seems that it will not get better, and living the rest of her life even with this minimal pain would be bad enough... but with the limitations of no contact sports and no rough housing with your brothers... and on and on... because of the slip itself, not the pain... and the fact that it could get worse... that is the main limiting factor that we don't want her to have to live with the rest of her life.

I am really curious (and I did not ask the Dr) how long it probably took her to get to 50%... since she has the rounded over S1... and I am guessing that happens as a result of a larger slip that pivots on the front edge of S1, and probably does not happen over night... I'd be curious if they would guess at how long it took to get this far... I know they could never know for sure... without a history of xrays... but since they believe it is congential, and she has had pain in the hip for over a year and a half, I wonder if it has been slipped this bad or close to it for a while...

We saw a pediatric orthopedic spine surgeon... he is also trained in neurosurgery and does the entire surgery himself. One of the other Drs we are seeing is a neurosurgeon. I am not clear on the pros and cons of going one way or another... I did not even know the difference until today.

If yours was grade 1 and you had surgery, I am guessing you had significant pain from it? My understanding is that grade I or II without symptoms is usually handled conservatively and watched?

I appreciate all your help and time responding.

 
Old 12-04-2012, 07:26 PM   #13
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Re: Spondylolisthesis questions (teen)

I began with sciatic pain that ran down my right leg. Eventually it was so painful that it limited my activity, but still I waited. My reflexes were affected, and I had some numbness in my feet.

Eventually I couldn't stand long enough to chop an onion or fry an egg, and I was driving down my driveway to the mailbox to collect my mail...couldn't walk that far before excruciating pain would strike. The only thing that saved me was that the pain would go away when I sat down or lay down. Otherwise, I would have had surgery much earlier.

I don't know for how long I may have had the spondylolisthesis, as I had sciatic pain for a while in my twenties. It went away and I was pain-free for about 3 decades. I was a figure skater in my youth, in training for competition, and I fell a lot on my coccyx...did that fracture the pars and cause the spondy? I don't know, nor could anyone tell me. But I lived an active lifestyle until the sciatic problems started again in my 50s.

People have very different opinions on whether a neurosurgeon or an orthopedic spine surgeon is "better." Their training is very similar these days -- but neurosurgeons are trained in the workings of the brain itself, also. In your daughter's case, I think she'd be better off with an orthopedic spine surgeon, (and one with neurological training is just icing on the cake!) ...and I like the idea of a pediatric spine surgeon.
Some of it depends on the intangibles -- how you are treated at the office, does he see the patient or does a PA do all follow-up work, reputation of hospital where surgery would be performed, etc.

What I would ask the next doctor, assuming the diagnosis is pretty much the same, is what are the risks of not having the surgery at this time. If your daughter has limited pain...it is something to think about. Her listhesis may not move any further...but I would be worried about what could happen if she had an impact while playing sports (a collision or something).

My incision runs up and down, which I believe is typical for a posterior surgery.

When is your next appointment?

 
Old 12-05-2012, 04:37 AM   #14
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Re: Spondylolisthesis questions (teen)

[QUOTE=flyguy1;5090891]We have been chasing hip pain in my daughter (13) for a couple years. Tried almost everything, until a week ago when they did spine x-rays and showed a pretty significant slip in L5 (about 50%). We are waiting to see a pediatric spine specialist. I am hoping that anyone who has been through this can shed some light on some of the millions of questions I am thinking about every minute of every day.

I have ready tons on spine movement... but not many things I read differentiate between movements that may cause the initial injury, movements that make it slip more, and movements that can or can't be done if you have fusion surgery. I know that trauma, gymnastics, football, etc. can cause the injury or repeated stress that can weaken the vertebrae, but can just falling on your butt on a gym floor cause it? Can having someone else fall on your back do it? [COLOR="Magenta"]This can be a congenital problem (born with it), like it was with me. I'm 58 now and it was discovered when I was 18. Not as severe as your daughter's problem so I pretty much ignored it. However, now at my age, it is causing me some pain when I stand or walk and I'm not ready to be immobile. You're talking about her getting fusion surgery? Back surgeries are so tricky; they scare me since some people get so much better and others get worse. Are they talking about placing titanium cages around the affected vertebrae? Hopefully, there's a better way, but I don't know what it is. I certainly sympathize and wish you luck. Would like to hear how it turns out if you decide to go with surgery. good luck to you and your daughter![/COLOR]

And after the condition is there (from injury, overuse or congenital) what movements make it slip worse? My daughter went through physical therapy about 6 months ago and we are wondering if that may have made things worse. She is also serious in to softball and has been training hard... swinging, pitching, etc. Or does it really just depend on growth and body changes to slip further or not?

And if she has to have L5-S1 fusion, what does that mean for softball? Has anyone on here had that and played softball afterward?

We are also going to have to wait a couple weeks to see the Dr. Other than NOT doing any softball or workouts, is there anything else she should not be doing? I am guessing since I have read that many people live with 50% and greater for many years until they finally decide to get surgery, that the spine will not just slip on it's own... as long as she does not do anything that puts her in a position to get hit or twist, etc. waiting the couple weeks should not be a problem, right?

Any info you can provide would be greatly appreciated.[/QUOTE]

 
Old 12-05-2012, 06:14 AM   #15
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Re: Spondylolisthesis questions (teen)

Thank you, teteri.. I really appreciate your advice.

One next week... another we are still scheduling. We will definitly ask about risks of not having the surgery. My understanding is, that other than surgery, there is nothing that will eliminate the pain... I am guessing that most Drs would not even consider an orthoscopic decompression (not sure if that is even possible) without doing the fusion also... so, without surgery, the pain would persist... and beyond the pain, the changes in walk, limp, stance, hips out of whack and very mild scoliosis of the mid lumbar region (which the Dr felt might be from the compensation in posture from the pain, and it might actually correct itself to some extent after the pain is gone)... they would all persist and get worse... and screw up a lot of other things as an indirect consequence of the pain.

The sports injury potential is a concern for us also... and makes the year and a half we went without a diagnosis from other doctoter even more frustrating, since she was participating in competitive sports all along.

I have been reading about congential spondy... as the first Dr said that significnat slips are usually not due to trama or overuse Pars injuries... but instead, congential defect, and are much more likely to progress. So, I guess it is conceivable that she has had this since birth... and it has progressed all along, or more so since puberty.

 
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