PDA

View Full Version : Pediatric orthopedic surgeons for possible revision, Please!



laurieg6
08-30-2009, 06:56 PM
Hi All,

Some of you probably remember our story and much of it is in my signature below. Recently, we briefly tried a shoe lift for Alex but on one side it made him limp and on the other side, it hurt his back. Our surgeon said to stop using it if Alex doesn't like it. But my husband and I really think his posture is not only not improving but that it's getting worse. He is leaning forward and toward his left side while bending his left knee. It is not a very socially acceptable way to present oneself, especially as an adolescent - it makes him look like an old man!

I am researching posture programs such as the Alexander technique and the surgeon did give us a referral for it despite there being no research/published scientific papers about it. He doesn't have anything else that he thinks will help, but he did, as I wrote about previously, mention a later fusion to the pelvis; this, I am not ready to accept as a surgical outcome without many more opinions.

So I'm hoping that some of you will respond to this request and tell me who your doctors are so I can possibly see about getting an appt. with them. I live on the West Coast - Seattle, WA.
I prefer to stay out west if possible but would travel anywhere necessary to get my son the best opinions and care.

We were told that one surgery would be all Alexander needed but that might not be the case. If a surgery of one or more vertebral levels could help prevent a fusion to the sacrum, esp. while he is still so young, I would rather get it done sooner than later. Alexander is so sick of us talking about his posture and reminding him to stand up straight. This is not working and is bringing him to tears.

Please try to write back with any info you have about the best orthopedic surgeons in the country. I thought we'd picked the best, but now I'm not so sure.

Thanks,

Pooka1
08-30-2009, 07:23 PM
Laurie,

I think there are probably at least a few surgeons who have a good track record with pediatric revisions. I think the way to find them beyond emailing a bunch of them is to look at the presentations at meetings.

My one daughter has 10 levels fused and I have seen that referred to as a"short" fusion. You son has only 8 levels fused which I suppose is considered "very short." That may help in any revision.

I think they decide what to fuse based on how level the vertebrae can come on bending. My unfused daughter couldn't quite bend so as to make L2 level so I think she will have an 11 level fusion. I wish she was fused earlier but that is water under the bridge.

The right expert for your son is out there and you will find him. At some point, getting enough opinions and asking enough of the right questions will bring you to the right action for your son. The important point is to keep asking questions until you get to a certain comfort level with whatever you decide. That will never be completely comfortable but it might be close enough. For example, we really had no choice with Savannah's fusion and once we realized that, a certain calm determination ensued. I hope you find that. I think you will. :)

laurieg6
08-30-2009, 09:32 PM
Sharon,

I can look at presentations at meetings for the Scoliosis Research Society. Are there any other organizations you know about and would recommend?

I know what you mean about an earlier surgery. We were so afraid of surgery, I hope we didn't overlook earlier opportunities to help my son's back when he was a few years old.

One of our criteria for picking a surgeon when he was 11 was how they spoke about the length of the fusion and trying to get a reasonably short fusion that would be the only surgery necessary. I think that 11 levels isn't that much if it's Willow's only surgery. I'm sure she'll have a great outcome just like Savannah. Your surgeon sounds like he did a great job and will do so again.

I really hope you're right and we can find the right expert. I hope it happens fairly soon because I really want my son to be able to move on from this and I want to stop "nagging" him about his posture.

Thanks for your response. I really appreciate it.

LindaRacine
08-30-2009, 09:36 PM
Hi Laurie...

I highly recommend that you take your son to UCSF. They undoubtedly do the most revision surgery on the west coast. Dr. Mohammad Diab does pediatrics only, but I'm not sure how much revision work he does. I volunteer with Dr. Sigurd Berven, who does mostly revision work, on both kids and adults. He's an excellent surgeon. The phone number to make appointments is 415-353-2967. If you have any trouble making an appointment, let me know.

Regards,
Linda

Pooka1
08-30-2009, 09:46 PM
Sharon,

I can look at presentations at meetings for the Scoliosis Research Society. Are there any other organizations you know about and would recommend?

No but Linda might know of some.


I really hope you're right and we can find the right expert. I hope it happens fairly soon because I really want my son to be able to move on from this and I want to stop "nagging" him about his posture.

Thanks for your response. I really appreciate it.

I understand the need to nag because you think if he tries enough that it will work. But Laurie, now that you know there is a structural reason for the lean, you can stop nagging him, right? Be kind to yourself.

I can see if the Alexander technique works you can nag him to keep up with that, though. It might work... I hear great things about it but have no first-hand experience.

It is a certainty that there are surgeons out there with the right experience base to handle this case. Someone in the the other thread suggested consulting Betz (even though he is on the other side of the country I know). I love that idea. Even if he doesn't have loads of experience with this particular situation, he was been a past president of the SRS, has sat through untold number of presentations, and would be able to give you a few names of folks who are interested in hemivertebrate correction and who may be doing research now to determine how best to handle it. I think he can help you.

Please let us know how things go.

Best regards,
sharon

LindaRacine
08-30-2009, 09:53 PM
Sharon,

I can look at presentations at meetings for the Scoliosis Research Society. Are there any other organizations you know about and would recommend?

Hi Laurie...

What sort of things are you looking for? If you're looking for doctors who specialize in scoliosis, searching this site, or the SRS membership site, are really your only choices. If you're looking for information about scoliosis research, I have a bunch of links on my website:

http://www.scoliosislinks.com/References.htm

Regards,
Linda

Pooka1
08-30-2009, 09:58 PM
Hi Laurie...

What sort of things are you looking for? If you're looking for doctors who specialize in scoliosis, searching this site, or the SRS membership site, are really your only choices. If you're looking for information about scoliosis research, I have a bunch of links on my website:

http://www.scoliosislinks.com/References.htm

Regards,
Linda

My suggestion was to look specifically for guys who are interested in hemivertebrate corrections. I don't know if anyone specializes in that but I bet there are a few folks who have done more cases than many other folks perhaps.

I have looked at the SRS meeting abstracts. The topics range fairly widely as far as I can tell. I can imagine someone reporting on some hemivertebrate cases they worked on that might reflect a research interest in this area.

LindaRacine
08-30-2009, 11:30 PM
Hi...

At this point, I personally think it's more important to find someone who has a lot of revision surgery experience, as I suspect the hemi-vertebrae isn't that much of an issue after fusion. Laurie, if you're looking for specialists with a lot of hemi-vertebrae experience, you might also try searching on neurofibromatosis, as it's a common symptom.

Regards,
Linda

laurieg6
08-31-2009, 01:28 AM
Thanks for the tips and information Sharon and Linda.

If Alexander had been several years younger, I bet we would have been able to get his hemivertebra excised with only the two vertebraes above and below it fused. But everyone said it was too experimental back when he was little and then his curves became too large to excise it with that minimal of a fusion. None of the doctors we consulted felt it was worth the risks when he needed surgery.

I'll search on the SRS websites - I already have done so in the past, plus I get their newsletter because I'm a member.

My son is totally open to travelling to see doctors for consultations and I'm definitely calling Dr. Betz and the UCSF clinic, as well as a Dr. I've heard of in Phoenix.

We also have appts. this week with Alexander Technique and Feldenkrais practitioners. I'll let you know how they go. My life is periodically consumed with scoliosis for many years now and this is one of those times.

Thanks again for being so helpful.

Pooka1
08-31-2009, 06:34 AM
Laurie, excellent plan.

I would also ask Betz about the issue of trying to find a hemivertebrate expert versus trying to find a revision expert.

Maybe Linda is correct that you just want the best revision guy at this point as opposed to someone very knowledgeable on this type of scoliosis.

He is out there.

laurieg6
08-31-2009, 01:42 PM
Thanks again for your very encouraging words Sharon. I truly appreciate them.

Laurie

mariaf
08-31-2009, 03:35 PM
It is a certainty that there are surgeons out there with the right experience base to handle this case. Someone in the the other thread suggested consulting Betz (even though he is on the other side of the country I know). I love that idea. Even if he doesn't have loads of experience with this particular situation, he was been a past president of the SRS, has sat through untold number of presentations, and would be able to give you a few names of folks who are interested in hemivertebrate correction and who may be doing research now to determine how best to handle it. I think he can help you.


Sharon,

I agree completely - in fact, I would bet any amount of money that Dr. Betz can recommend someone with the particular expertise needed here.

I know personally of several instances where he was asked to recommend a surgeon in a particular part of the U.S. - or even outside of the U.S. - and he was able to recommend someone he had complete confidence in - even in other countries. He travels extensively around the U.S. and elsewhere and I'm sure he can recommend someone that Laurie will be very pleased with.

(p.s. Good luck Laurie! I'm assuming you have his contact information, but if you need any help getting in touch with Dr. Betz, please let me know.)