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View Full Version : Desperately seeking views/opinions - daughter's pain started 9 months post surgery



English Dad
06-01-2009, 04:28 PM
First post from me, looking for views (causes, treatments etc.) from parents or patients who have experieced similar pain as my daughter.

My daughter was diagnosed with scoliosis close to her twelfth birthday. As the curve soon progressed to beyond 60 degrees, she had surgery in June 2008. Prior to surgery she had been experiencing 'normal' pain for the condition when she became tired, had walked too far etc.

Surgery went fairly smoothly and her rods went down to her first Lumbar vertebrae. The one aspect that didn't quite work out was that her spine couldn't be fully straightened (spinal monitoring etc.) and she was left with a small curve, 12 degrees, below the rods.

Prior to surgery she led a very active life participating in all sports at school to a high level, as well as trampolining, skiing and ballet (4 times per week).

All went well with her recovery and she gradually returned to low level activities (no trampolining or skiing) but running and other activities came back into her life. So did ballet albeit with restrictive movement due to the rods and progressive fusion.

After 9 months she began to get pain in her lower back, not in the area of surgery or indeed in the area that had pain prior to surgery. This has now been with her for 3 months and has gradually caused her to cease all physical activity except ballet. It hurts when she runs, jumps or bends. Also when she laughs.

She has been x-rayed and examined and no underlying cause was found. There is no muscle spasm, no infection, no loose hardware. The remaining curve has not progressed and the surgeon is not concerned about it at all. He says that partial straightening is perfecrly acceptable and should not lead to any different post surgical symptoms than a fully straightened spine. I have absolutely no reason to question this.

So here's the request: has anyone else had any experience of making a 'full' pain free recovery, only for pain to then set in some 10 months afterwards? If so what kind of pain, where was it, any views on the cause, any ideas on how to get rid of it etc.

mamandcrm
06-01-2009, 04:38 PM
Hi English Dad,

One of the moderators might move your post, but if not you should maybe re-post in the surgery section for adolescents. If you don't get responses here, I think you will get them there. Good luck.

Pooka1
06-01-2009, 04:38 PM
I'm sorry your daughter is having this pain.



She has been x-rayed and examined and no underlying cause was found. There is no muscle spasm, no infection, no loose hardware. The remaining curve has not progressed and the surgeon is not concerned about it at all. He says that partial straightening is perfectly acceptable and should not lead to any different post surgical symptoms than a fully straightened spine. I have absolutely no reason to question this.

I have only seen one article on this and it backs up your surgeon. There is no difference in long-term pain between folks who are straightened a lot versus not so much.


So here's the request: has anyone else had any experience of making a 'full' pain free recovery, only for pain to then set in some 10 months afterwards? If so what kind of pain, where was it, any views on the cause, any ideas on how to get rid of it etc.

No but it sounds like you need to rule out an infection on the hardware. My daughters' friend at school who happens to use our surgeon also is battling an infection which I guess is why she switched from her surgeon to another (ours). I don't know how long her pain happened after her fusion but it wasn't right away as far as I know. I'll ask next time I see her.

Good luck.

LindaRacine
06-01-2009, 06:24 PM
Hi E.D...

There has to be a reason for your daughter's pain, regardless of anyone being able to see anything on xray. I would push for an MRI or CT/myleogram to look at the area below the fusion.

Regards,
Linda

txmarinemom
06-02-2009, 12:43 AM
Hi E.D...

There has to be a reason for your daughter's pain, regardless of anyone being able to see anything on xray. I would push for an MRI or CT/myleogram to look at the area below the fusion.

Regards,
Linda

I completely agree with Linda, and disagree with sugreons who say scoliosis doesn't cause pain before correction, or "twitches" after correction in the short (or even long) term. Some patients are lucky and tend to generalize.

Personally, I know my worst post-op correction pain is 1000x times better than my best day of pre-op pain.

Keep digging, and best wishes.

Pam

English Dad
06-02-2009, 05:21 AM
Thanks for the speedy responses - please keep them coming.

She's having an MRI later this week. The surgeon is very supportive.

Anyone with experience of no pain for several months, then pain?

Anyone any experience of this being associated with a growth spurt and therefore, it being temporary discomfort until things settle again?

What could we be looking for on an MRI as a possible cause?

All views welcome.

Pooka1
06-02-2009, 05:51 AM
Anyone with experience of no pain for several months, then pain?

I think my daughters' friend fit this pattern. It was an infection. I'll ask the kid today if I see her if this is the pattern she experienced. I usually see her when I pick my girls up.

laurieg6
06-02-2009, 10:22 AM
My son had a little pain before his surgery. It sounds like what your daughter had prior to hers.

But he has not had admitted to pain since he's had his surgery. He was fused with a partial curve of 30 or so degrees - due to his hemivertebra, his spine could not be fully straightened. His posture is not great either, unless he consciously straightens himself out. So I think that one day, unless he really keeps himself as straight as possible, he might end up with pain but not now/yet.

On the Spine Kids website, there's some girls with a great deal of pain since, or shortly after, their surgery. It's due to arthritis setting in, or hardware problems or many other reasons. You might want to check out that website and read about them when you get a chance.

Good luck figuring it all out. I wish you all the best.

Pooka1
06-02-2009, 03:19 PM
Okay I asked the kid... she had pain from right out of surgery, not months later. So it doesn't fit the pattern.

txmarinemom
06-02-2009, 04:50 PM
English Dad ...

I think once other conditions are either found/ruled out by an MRI - and as Linda suggested, possibly even a CT myelogram - the next place I'd try to get my surgeon to send me would be to a physical therapist.

It's entirely possible your daughter has adjusted her posture in such a way that it's causing fatigue: As simple as it sounds, it's very easy to let some muscles take the brunt of daily activiies while others atrophy. Certainly, it's worth investigation if nothing else shows up.

How exactly does she describe her pain, and am I understanding it's only been going on a month? Believe me ... I use that term "only" loosely ... I know a month of seeing your kids in pain is a month too long :-(.

If there's no soft dissue damage evident on an MRI - and no nerve issues indicated by a myelogram - I'd really approach it from the possibility she's just overcompensating in some areas ... and try PT.

Please keep us posted, and hang in there. There's an answer somewhere, and it sounds like all the really BAD answers have been eliminated ...

Small consolation for you right now, I know.

English Dad
06-03-2009, 07:43 AM
Again thanks for the posts, they are very informative. You have greater numbers of people in the US and with this, more patients, more parents, more internet posters and with all this, better access to and sharing of information. Please continue to post - what may seem obvious to one person may be new to another.

To answer your question, the pain has now been present for about 3 months. It isn't a constant and is more of an ache rather than a sharp pain. It seems to get worse as the day progresses all of which helps point to a diagnosis.

What is interesting in gathering the views of others via this forum, is that it points me in various directions to investigate in more depth: soft tissue damage, arthritis, posture etc.

Please keep the posts coming.

Bonnie55
07-15-2009, 11:03 AM
First post from me, looking for views (causes, treatments etc.) from parents or patients who have experieced similar pain as my daughter.

My daughter was diagnosed with scoliosis close to her twelfth birthday. As the curve soon progressed to beyond 60 degrees, she had surgery in June 2008. Prior to surgery she had been experiencing 'normal' pain for the condition when she became tired, had walked too far etc.

Surgery went fairly smoothly and her rods went down to her first Lumbar vertebrae. The one aspect that didn't quite work out was that her spine couldn't be fully straightened (spinal monitoring etc.) and she was left with a small curve, 12 degrees, below the rods.

Prior to surgery she led a very active life participating in all sports at school to a high level, as well as trampolining, skiing and ballet (4 times per week).

All went well with her recovery and she gradually returned to low level activities (no trampolining or skiing) but running and other activities came back into her life. So did ballet albeit with restrictive movement due to the rods and progressive fusion.

After 9 months she began to get pain in her lower back, not in the area of surgery or indeed in the area that had pain prior to surgery. This has now been with her for 3 months and has gradually caused her to cease all physical activity except ballet. It hurts when she runs, jumps or bends. Also when she laughs.

She has been x-rayed and examined and no underlying cause was found. There is no muscle spasm, no infection, no loose hardware. The remaining curve has not progressed and the surgeon is not concerned about it at all. He says that partial straightening is perfecrly acceptable and should not lead to any different post surgical symptoms than a fully straightened spine. I have absolutely no reason to question this.

So here's the request: has anyone else had any experience of making a 'full' pain free recovery, only for pain to then set in some 10 months afterwards? If so what kind of pain, where was it, any views on the cause, any ideas on how to get rid of it etc.


You may want to make sure that she is wearing the correct shoes. One leg is longer that the other, therefore, this may be contributing to her problem. I have Scoliosis and this has helped me.

Bonnie55
07-15-2009, 11:26 AM
You may want to look at the shoes that she is wearing. If she is doing a lot of walking, sports, it is important that she is wearing the correct shoes due to the difference in the length of her legs, regardless of how minor. I have gone through the same as your daughter.

I am also writing to you and everyone who has a child with Scoliosis, are they looking into their children’s mental health, such as stress, self-esteem, relating to others. There are so many emotions that some children do not want to discuss with their parents. I would appreciate your thoughts.

I will become a licensed mental health therapist in August of 2009 and I have been in mental health for 12 years, I think it is a huge part of treatment that has been overlooked. Have you thought about getting you daughter involved in individual; counseling or group counseling where she can share her feeling with others who are going or have gone through the same experiences?

Do you think it would help your daughter? Information to take into consideration is low-self esteem, lack of control, frusturation, anger, "feeling different than other's, comparing her self to others which can affect self-esteem. And what I think is important that "life will go on and she will get through this time in her life.

The Best of Luck
Bonnie55
Scoliosis Survivor

gardenjen
07-16-2009, 05:20 AM
I agree that your daughter should have another look. Hopefully something not-so serious, like the tendency to drift back into the old lumbar compensatory pattern - which can cause sacroiliac or facet joint pain (worse with loading:jumping, running, or bending/twisting), explains her symptoms.