Other options after fusion??

[emma12]

Wasn't sure how to title this post, but, sorry for the long post and here goes:

My 12 1/2 year old daughter was fused last August from T2-T11, she had curves of 61T and 53L at time. The lumbar curve was thought to be compensating (her bending xray reduced to <15), so was not corrected. We had our 6 month post op on Feb 28, and, sad to say, her doctor says her lumbar curve isn't where he wanted it to be by now (it's still about 35 degrees), and, apparently there is now some rotation going on. Her right shoulder blade and front chest wall are sticking out (not horribly, but worse than right after surgery), and her waistline is not even (because her curves were so well balanced before surgery, these things were not really issues then). So, he has told us to wait and watch closely but, that further fusion to L2 may be needed down the road.

He said we could try wearing a brace again (which she didn't really comply with in the first place), go to physical therapy...basically anything we wanted to try he would approve. There was also some discussion on leg length because she appears straight when she bends her right knee, however, that tilts her pelvis, so, he doesn't really believe that there is a leg length issue.

Well, we decided to try physical therapy first - the doctor wrote it for postural training. Got 2 opinions, one said to wear a slight lift in one shoe for about a month or so to force the muscles to retrain to the other side -- also, a great deal of looking at leg length, finally decided that she doesn't have a leg length issue. He didn't really want her to do any exercises because she would just be strengthening both sides of her back...said maybe in a month he would try that. He also didn't really sound like he knew a great deal about scoliosis. Second pt spent a loooong time looking at leg length and her feet. She claims to be into bio mechanics, suggested many things similar to an article just posted on these boards concerning bending and standing. She says daughter does have unusual wearing of foot pad on right foot, which can indicate a leg length issue, but--all other tests of this are negative (bending of knees while lieing down...). She did give her some exercises to do which focus on bending at waist and rotating spine while bending. Doctor says exercises are ok for her to do (I was worried to see her bending after 6 months of no bending). This pt also wants orthotics for feet (simply arches that can be inserted in both shoes)--and, I have to say my daughter often complains of her feet hurting, and has worn Dr. Scholl's arches in many shoes if they don't give enough support. So, this too seems like valid advice. I believe we're going with the second pt, daughter likes her better, however, I have not seen great compliance with doing the exercises at home (we only saw her last Wednesday, though).

Anyways, I am wondering if there is anyone else out there who may have had to go down this road, it kind of seems like we are where we were before the fusion (depressing thought). But, I am also wondering if anyone knows if VBS is an option at this time (at the time of her first surgery, I believe her curves were too large), she was very flexible at the time of surgery, and still seems to be, but the last 6 months of relative inactivity may have changed all of that.

Thanks for any suggestions or input from anyone---

[txmarinemom]

My 12 1/2 year old daughter was fused last August from T2-T11, she had curves of 61T and 53L at time. ... But, I am also wondering if anyone knows if VBS is an option at this time (at the time of her first surgery, I believe her curves were too large), she was very flexible at the time of surgery, and still seems to be, but the last 6 months of relative inactivity may have changed all of that.

Emma12, unfortunately, VBS is intended to be employed *instead* of fusion.

Your daughter, like I, essentially no longer has separate vertebra between the fused levels. The clips use during VBS are placed to connect/correct *individual* vertebra.

It's impossible the fused portion of her spine can be stapled (it's now a solid piece, regardless of what her curve measures), and I've never heard it used to extend from fused to unfused spine.

I'm sure some of the stapling moms can provide more info.

Best regards,
Pam

[mariaf]

It's impossible the fused portion of her spine can be stapled (it's now a solid piece, regardless of what her curve measures), and I've never heard it used to extend from fused to unfused spine.

Hi Emma12,

I agree with Pam that the fused portion of the spine cannot be stapled.

As far as stapling the unfused portion (T12-L2 ?), I would agree that - to my knowledge - it has never been done before.

However, you have nothing to lose by contacting Dr. Betz through Janet Cerrone and asking since she'd know much better than I would.

Her contact info is:

janetcerrone@comcast.net or call 1-800-281-4050

Good luck!

[Pooka1]

Wasn't sure how to title this post, but, sorry for the long post and here goes:

My 12 1/2 year old daughter was fused last August from T2-T11, she had curves of 61T and 53L at time. The lumbar curve was thought to be compensating (her bending xray reduced to <15), so was not corrected.

I am wondering if others have encountered other means to determine if a curve is compensatory. The reason I ask is that I look at the films for my daughters and they have what appear to be a measurable curve in the lumbar region and yet those curves have never been mentioned by either the orthopod or the surgeon. I became curious when I read folks here report a T and L and sometimes C curvature. As far as I know, there was no bending x-ray to determine ability to straighten the curve. How can they be so sure it is compensatory? And am I even correct in assuming they believe it to be compensatory just because they only give me measurements for the T curve?

We had our 6 month post op on Feb 28, and, sad to say, her doctor says her lumbar curve isn't where he wanted it to be by now (it's still about 35 degrees), and, apparently there is now some rotation going on. Her right shoulder blade and front chest wall are sticking out (not horribly, but worse than right after surgery), and her waistline is not even (because her curves were so well balanced before surgery, these things were not really issues then). So, he has told us to wait and watch closely but, that further fusion to L2 may be needed down the road.

I'm sorry to hear this.

(snip possible approaches)

Anyways, I am wondering if there is anyone else out there who may have had to go down this road, it kind of seems like we are where we were before the fusion (depressing thought). But, I am also wondering if anyone knows if VBS is an option at this time (at the time of her first surgery, I believe her curves were too large), she was very flexible at the time of surgery, and still seems to be, but the last 6 months of relative inactivity may have changed all of that.

I take you to mean VBS in the lumbar region. That is an interesting question! The folks here who have been through that might know the answer to that. As far as I know and can recall of the films of VBS patients, they all appear to be in the thoracic region.

Thanks for any suggestions or input from anyone---

I just want to wish you and your daughter good luck.

(type so post will post)

[mariaf]

Pooka1 wrote:

"I take you to mean VBS in the lumbar region. That is an interesting question! The folks here who have been through that might know the answer to that. As far as I know and can recall of the films of VBS patients, they all appear to be in the thoracic region."

Lumbar curves can be stapled and many have been successfully. However, I do not know of any patients who had staples inserted "as an extension" of a fusion.

I assume that in theory, it COULD work since the levels that are being stapled are not fused, but that would be a questions for someone like Dr. Betz.

It's a very interesting question though and I'd be interested in hearing the answer.

[txmarinemom]

Pooka, your posts are pretty difficult to respond to with the "text added so post will post". One almost has to take the entire post to an outside editor to copy and paste tags in a decent sized window.

You can nest multiple b-code tags when you respond to a post, making it tons easier on those who try to answer your questions: I'd be happy to send instructions on how to do so.

I am wondering if others have encountered other means to determine if a curve is compensatory. The reason I ask is that I look at the films for my daughters and they have what appear to be a measurable curve in the lumbar region and yet those curves have never been mentioned by either the orthopod or the surgeon. I became curious when I read folks here report a T and L and sometimes C curvature. As far as I know, there was no bending x-ray to determine ability to straighten the curve. How can they be so sure it is compensatory? And am I even correct in assuming they believe it to be compensatory just because they only give me measurements for the T curve?

I've never heard of another method besides bending, and the guidelines are:

Compensatory curves
- DO correct at least 50%, on bending, and measure =< 25°.

Structural curves
- Do NOT correct => 50% on bending.
- DO correct at least 50%, on bending, but measure => 25°.

I had a structural right thoracic curve of ±53°. I also had compensatory C & L curves, and as my body adjusts to the new post-fusion posture, it's possible those will correct to almost nil. In the event the compensatories improve, my thoracic correction (now ±20°) could further improve.

Sharon, the only way to know why they believe what they believe about your daughter's curve is to ask the surgeon. Listen to this board for even a short while, and you'll see how varied some things can be.

I can't say *why* (in all cases) they know for certain that any curve is compensatory without bending films. I know in my case, Hanson simply watched me bend laterally: My best *guess* is an experienced surgeon can estimate opposite bending/compensatory designation without an x-ray by eye.

It's also my guess if they only gave you one number for one curve, your daughter has one structural curve. Yet another thing you should ask the surgeon.

Again, have you had your pre-op? These are really questions for your surgeon vs. the board.

And, no ... absolutely not ... VBS is NOT exclusively used in the thoracic region.

Regards,
Pam

[txmarinemom]

... However, I do not know of any patients who had staples inserted "as an extension" of a fusion.

I assume that in theory, it COULD work since the levels that are being stapled are not fused, but that would be a questions for someone like Dr. Betz.

It's a very interesting question though and I'd be interested in hearing the answer.

I would love to hear Betz's views on if it's possible now - or if it may *someday* be possible. As impressed as I am with VBS as an initial treatment, just imagine if they could use it for extensions!

From a mechanical standpoint, the potential to overcome rotational loading of a large, previously fused, dynamic area (both curving and rotating) with clips below the previous fusion seems low. Extreme amounts of force will be applied to 4 staples ...

Other things come to mind ...

- This is a relatively new fusion - is it solid enough to support a clip at T11/T12?

- What potential damage would the discs in the stapled area sustain in the short-term - and over time - connected to a fused region?

Emma12, I'm so sorry y'all are even forced to explore further options - especially so soon after her first surgery . You're in my thoughts.

Regards,
Pam

[mariaf]

From a mechanical standpoint, the potential to overcome rotational loading of a large, previously fused, dynamic area (both curving and rotating) with clips below the previous fusion seems low. Extreme amounts of force will be applied to 4 staples ...

Other things come to mind ...

- This is a relatively new fusion - is it solid enough to support a clip at T11/T12?

- What potential damage would the discs in the stapled area sustain in the short-term - and over time - connected to a fused region?

Pam,

I'm strictly speculating here - but my gut feeling is that there would be lots of issues, like the ones you mentioned above, that might make use of VBS as an extension of fusion a long shot.

Maybe in the future, since they have already made some improvements with VBS compared to 6 or so years ago when it first came out........

[emma12]

Thanks to all for some helpful comments. I was specifically talking about VBS as an "extension" to the fusion. Hadn't thought about some of the questions posed, so I am very thankful for all of the input. I realize this case is unusual. I do have a call placed (and email) to Dr. Betz's office, waiting to hear back from them. In all of the reading I have done, I had not seen where this had ever been done before, and would be hesitant to be so experimental, but I would like to know if it is even an option.

As for the comments about compensating curves, here is what I have experienced: bending xrays are usually done within 30 days of fusion as a means to help the doctor determine the length of fusion, and whether or not a curve is compensatory. As I have previously posted, in Feb of last year we were told she should have surgery the sooner the better, so we scheduled for April. As this came to us as a bit of a shock (her curves had jumped from low 40's to 53T and 47L in 4 months), we then proceeded to get other opinions. At the same time we were still going ahead with the surgery, so she had bending xrays, which showed the lumbar to reduce to near 0, there were no structural components to the curve (meaning changes to the vertabrae), and when she bent the curve disappeared. Since none of us were emotionally ready for the surgery, and several doctors said we had time to wait and think this through, at least 6 months and maybe a year or more, we ended up canceling the surgery.

Four months later her curves had jumped to 61T and 53L, the lumbar was now showing some structural involvement (which I could see when she bent over, it no longer disappeared--and her bending xrays showed reduction to only slightly <15)--thus we scheduled surgery for Aug and went ahead with it. The changes in those 4 months were significant. Up until she was in surgery, the doctor held off deciding whether to fuse further than T11, but, she reduced so well in surgery he decided to take the chance (as I knew it was) to not fuse the lumbar area. It seems to be a little bit of a guessing game as far as determining what was compensating or not. In March, there was no doubt that it was compensating, but, in Aug, apparently it was becoming fixed.

So, here we are. I feel like I am back where I was before surgery. Hoping and praying that the curve will continue to straighten (and not worsen). I am sure that being virtually inactive for 6 months hasn't helped. The pt seems to have some valid points, hopefully this will be what her spine needs to "get it straight". Thanks again, and am continually hoping for any other input on this.

[gardenjen]

Actually, Dr. Betz at Shriner's suggested that he would try vertebral stapling my daughter's lumbar spine if her compensatory curve did not reduce after the T4-T11 minimal invasive thoracoscopic fusion which we scheduled for her
in 6/2004. A month before the fusion, she decided to cancel it and never had it. She was 20 years old then and we felt like we had to respect her choice related to the surgery. If there's any chance of avoiding an extended fusion, though, I'd go for an evaluation. He's great. Progressive, but not pushy.

[emma12]

Thanks again, for everyone's input and kind words. Just a little update, I just heard back from Dr. Betz's office, and they say it is possible, however, they need to see my daughter in person to evaluate. So---we may be heading over there soon. It would depend on her flexibility... and several other factors to determine if she would be a candidate for this or not. And, they have not done this before, so---more thinking to do. I'll keep you all updated----

[txmarinemom]

Yay!

Thanks again, for everyone's input and kind words. Just a little update, I just heard back from Dr. Betz's office, and they say it is possible, however, they need to see my daughter in person to evaluate. So---we may be heading over there soon. It would depend on her flexibility... and several other factors to determine if she would be a candidate for this or not. And, they have not done this before, so---more thinking to do. I'll keep you all updated----

That's absolutely fantastic, emma12! I'm so glad to hear they're willing to consider it. My fingers are definitely crossed for y'all.

I know you said it's not a given, but how exciting it's possible your daughter might avoid more invasive work. You must be a bundle of nerves, but know many are sending good thoughts your way - and are anxious to hear the outcome!

Best regards,
Pam

[mariaf]

That's great news, Emma. Nobody likes the idea of more surgery - but as Pam said, it would be a much less invasive option than the alternative.

Also, keep in mind (and I know pretty well how Dr. Betz operates - no pun intended) - if he doesn't think something is safe AND has a reasonable chance of success, he won't do it. I know a lot of patients who were not candidates for VBS - he felt it wasn't likely to work for them and so what was the point of putting them through surgery.

Best of luck and keep us posted.

[OliviasMom]

Emma,

Thanks for posting the situation your daughter is facing. My daughter's is 13, and is going through a very similar thing. Her lumbar curve was considered compensatory. Six months after posterior surgery (T5-T12), she has obvious rotation and her lumbar curve has progressed.

Please keep us posted with your findings. Any information you discover is appreciated.

I'm hoping for a great outcome for your daughter and thinking of you both.

[laurieg6]

That's great sounding news from Dr. Betz's office. I'll be interested to hear what he says when you meet him. I have been worried on and off that Alexander's posture (still leaning onto his hip and his shoulders tilting a little forward without reminders to straighten up) might indicate what surgeons would consider a need for more surgery. So far though, we've been told that the fusion was a success and he'll be starting PT in a couple of weeks.

Good luck with all of it. It sounds like a very difficult situation and I'm sending you many positive wishes.