Surgeon consult plus some opinions

[Pooka1]

Today was had our consultation with the surgeon as a second opinion from our orthopod.

No surprises but some interesting opinions.

First, as expected, S will have posterior spinal fusion surgery over Easter break. She will be in the hospital 5-7 days and home for 3 weeks. No bracing or casting at any point. Back in school afterward. No gym for 8 months.

After her surgery and recovery, she is DONE DONE DONE D-O-N-E with scoliosis. Done. So her entire experience with the condition will be a little over a year counting to the end of her not being able to do gym. If I count it to the end of her recuperation and her return to school, it is a scant 8 months. A pretty good deal I think. Maybe as good as it gets.

W will go into a night-time bending brace although she was given only a 20% chance that it will allow her to avoid surgery. She may need to wear that for two years. And, as mentioned, there is an 80% chance it will not hold her curve enough to avoid surgery. So she is looking at a far longer involvement with scoliosis compared to S. Were I her, I would forgo the brace and get the surgery as soon as I was a candidate but it is her decision. I support completely whatever it is.

And for some random opinions that came out during the consult:

1. The best evidence for bracing for W's particular case is some recent work done with the night-time bending brace. No other braces are predicted to be effective for her. The results are new and the "n" is small but it is the only promising bracing alternative for W at the moment.

2. I asked about Spinecor and there was some suspicion that the results reported by the inventors might be overly "rosy" as compared to a report done by a more dispassionate researcher without an intellectual or financial stake.

3. W, at ~ 31 degrees, is likely not a candidate for Vertebral Body Stapling (VBS) though our surgeon is not an expert on the technique and has never done it.

4. I asked about the minimally invasive surgery and our surgeon actually had some training in it. He said the technique/instrumentation/hardware aren't there yet in his opinion. Too new. Not effective enough. I am hoping it will be developed enough if/when W needs surgery.

I think that's most of what I remember.

[CHRIS WBS]

I hate to dampen your spirits, but nobody is ever DONE with scoliosis. I wonder how many parents were told the same thing years ago when their children were having corrective surgery with Harrington rod instrumentation. Scoliosis is a chronic disease. It can be managed but it cannot be cured. Children and adolescents certainly fair well much better following this surgery over adults, but for any surgeon to tell a parent that their child will be DONE with scoliosis is simply misstating the facts.

[Pooka1]

I hate to dampen your spirits, but nobody is ever DONE with scoliosis. I wonder how many parents were told the same thing years ago when their children were having corrective surgery with Harrington rod instrumentation. Scoliosis is a chronic disease. It can be managed but it cannot be cured. Children and adolescents certainly fair well much better following this surgery over adults, but for any surgeon to tell a parent that their child will be DONE with scoliosis is simply misstating the facts.

I meant there will be nothing left to treat. Of course the long term on the particular spinal fusion surgery is unknown to the extent it hasn't been done for decades. Equally, I could get hit by a bus tomorrow so that is unknown also.

If you know of specific things, as opposed to potential vague issues with this particular spinal surgery several years down the road that will dog S after the recovery from the surgery, I'd like to know what they are. Can you list them?

It seems she will be in the same category as the rest of us w.r.t. our health after her surgery.

In re the wording I used ("done"), I asked if she is done with scoliosis after her surgery and recovery and the surgeon said yes. She will never need bracing. I take it there are no known problems with the surgery in the long term. That puts S back in the general population as far as I can see. If not, please advise.

Thanks.

[CHRIS WBS]

I’m so sorry. My intent was not to alarm you in any way. I’m sure your daughter will do just fine. Kids are amazingly resilient. If she were my daughter and I had recommendations from at least two scoliosis surgeons, I would proceed with surgery as well because I would want what is best for my child. I misunderstood what you stated in your post. My best wishes for successful treatment for both girls. They have a very good mom looking after them.

Chris

[mariaf]

[QUOTE=Pooka1]
W, at ~ 31 degrees, is likely not a candidate for Vertebral Body Stapling (VBS) though our surgeon is not an expert on the technique and has never done it.
QUOTE]


Hi,

I'm wondering since this doctor isn't an expert on VBS, have you gone for a consult with the doctors who ARE experts on it? Namely, the team at Shriners in Philadelphia. At 31 degrees, W certainly could be a candidate (if she has some growth left to do then she has basically met the two GENERAL criteria).

There's also a VBS support group on Yahoo as well. Here's the link:

http://health.groups.yahoo.com/group/staplingsupport/

Just FYI, the two BASIC criteria for VBS are a curve no more than 40-45 degress (that is somewhat flexible and will bend to about 25 degrees); and some growth left in the child. I'm not sure how old W is, but I certainly would NOT rule out VBS, especially since they are saying that there is an 80% chance she'll need fusion without it.

Let me know if you have any questions - and please feel free to e-mail me as well.

Good luck!

[mariaf]

W will go into a night-time bending brace although she was given only a 20% chance that it will allow her to avoid surgery. She may need to wear that for two years. And, as mentioned, there is an 80% chance it will not hold her curve enough to avoid surgery. So she is looking at a far longer involvement with scoliosis compared to S. Were I her, I would forgo the brace and get the surgery as soon as I was a candidate but it is her decision. I support completely whatever it is.

And for some random opinions that came out during the consult:

1. The best evidence for bracing for W's particular case is some recent work done with the night-time bending brace. No other braces are predicted to be effective for her. The results are new and the "n" is small but it is the only promising bracing alternative for W at the moment.

I am just curious -

Did he say why a nighttime bending brace would offer the her the best chance for avoiding surgery vs. other braces?

And also, what particular types of curves was he referring to that might best respond to a nighttime bending brace?

Thanks!

[Pooka1]

I’m so sorry. My intent was not to alarm you in any way. I’m sure your daughter will do just fine. Kids are amazingly resilient. If she were my daughter and I had recommendations from at least two scoliosis surgeons, I would proceed with surgery as well because I would want what is best for my child. I misunderstood what you stated in your post. My best wishes for successful treatment for both girls. They have a very good mom looking after them.

Chris

Ah see this is the problem with the written word. I was NOT alarmed.

I took you to mean you had specific information on sequelae of posterior spinal fusion surgery with the particular hardware they are using now. And if so, I wanted to know what information you had.

But as I understand your response, you do not have specific information but was only referring to the unknown future given the present surgical treatment and its unknown effect on patients in the out years. Is that correct? I'm just trying to understand your point here.

Thanks again.

[Pooka1]

[QUOTE=mariaf]

W, at ~ 31 degrees, is likely not a candidate for Vertebral Body Stapling (VBS) though our surgeon is not an expert on the technique and has never done it.QUOTE]

Hi,

I'm wondering since this doctor isn't an expert on VBS, have you gone for a consult with the doctors who ARE experts on it? Namely, the team at Shriners in Philadelphia. At 31 degrees, W certainly could be a candidate (if she has some growth left to do then she has basically met the two GENERAL criteria).

There's also a VBS support group on Yahoo as well. Here's the link:

http://health.groups.yahoo.com/group/staplingsupport/

Just FYI, the two BASIC criteria for VBS are a curve no more than 40-45 degress (that is somewhat flexible and will bend to about 25 degrees); and some growth left in the child. I'm not sure how old W is, but I certainly would NOT rule out VBS, especially since they are saying that there is an 80% chance she'll need fusion without it.

Let me know if you have any questions - and please feel free to e-mail me as well.

Good luck!

Hi Mariaf,

Thanks for this.

He admitted he didn't have experience with VBS and was obviously just guessing since by what you wrote, W does qualify as a candidate based on just those criteria. I have to assume he keeps up with the refereed literature on this and that he has heard presentations at medical conferences and such. But I don't know that.

Although it looks promising, W herself is not hot on VBS because it is so new. She is 13 (Risser ~ 0; ~ 5' 9" tall) and has done more research on it to date that I have.

In re VBS:

1. how many patients are there to date (approx of course)?

2. how many doctors do the procedure?

3. how long has this technique been around?

ETA - W remembered the surgeon said 4 years. Is that correct?

4. what are the complications? rate of revision?


I will do some more research on VBS before we get the other brace. But the idea that she might need two surgeries if the VBS fails slays me. It just sounds like too much. The spinal fusion is fairly well documented, is well-tolerated, has very low mortality/morbidity, etc. etc.

Thanks again.

ETA: W just asked me why VBS surgery is any better than spinal fusion surgery since it's all surgery. I assume the recovery period is (much?) shorter with VBS but I'm just guessing. But the spinal fusion surgery has about a 3 week recovery before a child can return to school. That is pretty short as it is.

[mariaf]

Hi again,

Rest assured, I'm not trying to sway you one way or the other - only to be sure you have knowledge of ALL options available to you (as I wish I had gotten sooner).

I can try to answer your questions as best I can, but you would probably be better off, and get more accurate answers from the contact person at Shriners, Janet Cerrone. Her info is janetcerrone@comcast.net or if you prefer to call it's 1-800-281-4050. Shriners Hospital in Philly has done the vast majority of the VBS procedures to date (probably in the hundreds, since you asked).

Just a few things -

they try to "weed out" cases that are likely not to succeed so that in the vast majority of VBS surgeries, no further surgery will be necessary (of course there are no guarantees with any form of treatment).

By the way, VBS is less invasive than fusion, with shorter recovery and no restrictions after the first month or so, lower morbidity (0), etc. In short, between the two surgeries (VBS and fusion) VBS is clearly the easier road, PROVIDED it will work for W - and you'd need a consult to see if she's a good candidate. Again, I stress that they try to only perform VBS surgeries in cases where it has been determined (based on x-rays, exams and other factors) that there is a high likelihood it will work. I know many patients who were told by the team in Philly NOT to opt for VBS because they were not good candidates.

Best of luck to you!! If you have any other questions - or would like me to pose specific questions to Janet, I'll be happy to do so.

[Pooka1]

I am just curious -

Did he say why a nighttime bending brace would offer the her the best chance for avoiding surgery vs. other braces?

He simply said this one has the most evidence of efficacy documented for cases like W's.

And also, what particular types of curves was he referring to that might best respond to a nighttime bending brace?

I don't know the universe of curves it is effective for but I can tell you that W has dextroconvex midthoracic scoliosis which is now about 31 degree. I can see a mild levoconvex lumbar curve on the x-rays but neither the orthopod nor the surgeon ever mentioned it so I suppose it is either too mild to report as a degree number or is compensatory or something, I don't know. The lumbar curve is somewhat greater in S and they haven't mentioned it in her case either. They just talk about the thoracic one.

Thanks!

You're welcome. I want to thank you for the information you provide.

(text added so that the post will post.)

[Pooka1]

(snip)
Just a few things -

they try to "weed out" cases that are likely not to succeed so that in the vast majority of VBS surgeries, no further surgery will be necessary (of course there are no guarantees with any form of treatment).

Do you know on what bases they weed out candidates?

(snip)

I know many patients who were told by the team in Philly NOT to opt for VBS because they were not good candidates.

Do you know on what bases they were told this?

Best of luck to you!! If you have any other questions - or would like me to pose specific questions to Janet, I'll be happy to do so.

Okay thanks again. I'll ask W if she has some questions.

[mariaf]

[QUOTE=Pooka1]

3. how long has this technique been around?

ETA - W remembered the surgeon said 4 years. Is that correct?

ETA: W just asked me why VBS surgery is any better than spinal fusion surgery since it's all surgery. I assume the recovery period is (much?) shorter with VBS but I'm just guessing. But the spinal fusion surgery has about a 3 week recovery before a child can return to school. That is pretty short as it is.

Hi again,

VBS has been around 6-7 years. I know one girl who is turning 18 who had it done when she was 12. She did great and never needed fusion.

Most kids I know who have had fusion were not able to return to school full time for a few months. However, better that you should speak to parents of kids who have had it. I'm sure there are many parents on here who would be willing to share with you how long it was before their kids returned to school. I'm not a doctor, but I really think it's VERY optimistic to say that a child can return to school full time three weeks after fusion.

What I can tell you is that, IN GENERAL, the recovery from VBS is MUCH shorter and easier than fusion. The kids have NO restrictions after the first month or so and lose NO flexibility (these are of course all the "pluses").

Again, I'm not trying to sway you - BUT if there's a chance that VBS will help your daughter avoid fusion, I would at least consider it.

Best regards,

[mariaf]

Okay thanks again. I'll ask W if she has some questions.

Sorry, I wasn't able to pull your quote within my quote, but you asked about how candidates were weeded out or why some were "rejected" for VBS.

Again, I'm not a doctor, but in many cases either the curves were too rigid (over 45 and/or would not bend to 25 degrees or less);

OR

the child was not a Risser 0 or 1 (which is required) - but rather a Risser 2 - 5 which is a contraindication for VBS.

OR

Sometimes there were other factors - perhaps the child had another medical condition that precluded them from the surgery.

What they do is take a full work-up (x-rays, both standard and bending, medical history, physical exam, etc.) and then determine a patient's candidacy.

Again, most otherwise healthy kids, with curves under 45 degrees that are not too rigid are candidates provided they still have some growth left to do.

Hope this helps - and please let me know if there's anything else I can do.

Again, I just wish to stress that VBS is less invasive than fusion, with shorter recovery and NO restrictions after the first month or so. I would, again, suggest that you ask the other moms of fusion patients on here about the length of time for recovery, when their kids returned to school, etc. I'm not trying to scare you away from fusion but I think the stats you were given (back to school at three weeks, etc.) were not typical.

I hope you don't mind my candor - I'm just trying to give you all available info so you can make an informed decision.

Take care,

[Pooka1]

(snip)
Again, I just wish to stress that VBS is less invasive than fusion, with shorter recovery and NO restrictions after the first month or so. I would, again, suggest that you ask the other moms of fusion patients on here about the length of time for recovery, when their kids returned to school, etc. I'm not trying to scare you away from fusion but I think the stats you were given (back to school at three weeks, etc.) were not typical.

Okay but I'm trying to fathom why he would grossly misrepresent this when he does so many of these procedures and I am likely (= 100% certain) to ask directly about his other patients.

I hope you don't mind my candor - I'm just trying to give you all available info so you can make an informed decision.

I certainly don't mind candor. That's precisely what is needed when discussing scoliosis treatment options. Thank for your candor.

Take care,

W is doing more research. I will also.

Thanks again.

sharon

[MATJESNIC]

Since my daughter just had spinal fusion 5 months ago, I can tell you a little bit about the recovery. The average child goes back to school after 6 weeks. Some go back at 4 and some go back at 8. Of course there are exceptions. But most are out for at least a month. Mine was back part time at 4 and a half weeks and full time before 6 weeks.

The thing about fusion is that it is so permanant. The spine is now fused as opposed to the way it is supposed to be. So to me, it is so unnatural. I would have given anything to avoid that surgery for my daughter. I will probably worry about her more because of the surgery than I would have if she didn't have it done. She has 26 screws and two rods in her back. That to me is still upsetting when I think about it. It is not natural. She will not be able to move the same as she did before the surgery. She also had a long fusion. Not everyone does.

With all that being said, we had no choice but to get her the fusion. I just wanted to give you my perspective of spinal fusion from someone whose daughter just had it done. Good luck and keep us posted. Let me know if I can help you in any way.