Dr. Recommendations - West coast (preferred) or East Coast (possible)

[hdugger]

We're looking for a good Dr. either on the west coast (we can easily get to Portland or Seattle, or around the SF bay area) or on the east coast, near DC. Our preference is Portland, but we're willing to travel.

My 21 year old son has Kyphosis (in the 60 to 70 degree range) and then a triple curve of which only the thoracic segment is important (our Dr. read it as 47 one time and 57 the other, but said it hadn't changed between the readings - it just had to do with how he read it :eek:) It's been stable (in the low 50s) for the last few years)

The person we've seen seems competent, but neither my son nor I have a good feeling about him. He seems very caviler, and he also missed the opportunity to do anything when my son's curve was 37 degrees at age 16.

So, we're looking for someone else. We'd like someone who is open to non-surgical treatments, but who will also recommend surgery should it be necessary.

Thanks for your help!

[leahdragonfly]

Hi,

I live in Oregon and I as well as my daughter have scoliosis. At age 21 I think your son needs to see an adult spinal deformity specialist. I have seen Dr Robert Hart at OHSU in Portland and I think he is extremely knowledgeable and capable. I will eventually need revision surgery/fusion extension and I will have him do it.

Also, Linda Racine, our moderator, is located in the SF Bay Area, and she speaks very highly of UCSF's spine specialists. I am sure she can give you some names if you are interested.

Good luck!

[hdugger]

Thanks so much, Gayle. OHSU is very close to us, so that would be great.

I have a bunch of family down near UCSF, and my son visits them frequently, so a specialist there would be great.

Thanks again.

[hdugger]

I just found a recent audio program with Dr. Hart, recorded this month. It's obviously a plug for OHSU, but still interesting

http://www.patientpower.info/listenreplaydetails.asp?showid=OHSU080709

[LindaRacine]

Thanks so much, Gayle. OHSU is very close to us, so that would be great.

I have a bunch of family down near UCSF, and my son visits them frequently, so a specialist there would be great.

Thanks again.

Hi...

The surgeons at UCSF who do most of the scoliosis surgeries are Dr. Sigurd Berven and Dr. Serena Hu.

Regards,
Linda

[hdugger]

Followup - We went to see Dr. Hart yesterday and all of us liked him a good deal. He spent more time with us in one visit than our previous ortho spent with us over 5 visits, answered all our questions, and seemed quick on his feet and knowledgeable.

The results of the visit, though, were pretty depressing. He reread my son's xray from a year ago and measured the thoracic curve (which our previous dr. had measure at 56 degrees) as 63 degrees. That's clearly into surgery range, although my son is not in any pain and does not appear to be progressing. My son's kyphosis is also in the 63 degree range, and his rotation is "profound" - he guesses 35 degrees, but he's going to measure on our next visit in two weeks.

He also ordered an MRI, for two reasons. One, is that he feels that scoliosis in males is so rare that it always warrents an MRI. Two, he saw something odd in the vetebrae around the appex of the curve (T5) that made him wonder if my son had some kind of congenital condition like a tethered spinal cord. He shows zero neurological symptoms, though.

The current plan is to come back for an MRI/xray/office visit in a few weeks, and then plan on another visit in a year. If the curve seems stable and if nothing new presents itself, he'd then be off office visits for 5 years. If not, he'd probably head into surgery once he graduates from college in a year and a half.

On the good side, he did a few tests of my son's hypermobility and said that they don't suggest Marfans. And it did also settle the question of whether we had to figure out a way to keep the kid on our health plan :)

[Pooka1]

On the good side, he did a few tests of my son's hypermobility and said that they don't suggest Marfans.

Might I inquire what exactly about the hypermobility isn't consistent with Marfans?

[hdugger]

Might I inquire what exactly about the hypermobility isn't consistent with Marfans?

Sure. We've always noticed that he's a little "stretchy" - he can bend his fingers way back, etc. Dr. Hart, though, had him press down on his thumb (using the other hand) and try to make it touch it's own arm (so, press down on left thumb and try to make it touch the left arm), and he didn't even get close. He doesn't have any other signs other than stretchiness and scoliosis.

[hdugger]

This is interesting,

http://www.marfan.org.za/diagnosis.html

I hadn't run across it before.

[Pooka1]

That's a very easy to use site.

It returned the answer that we knew... no Marfans for my daughters now. But nobody can say that they will escape emergent Marfans even if they test negate on genetics (~10% false negative rate).

And specialists do not always agree. The orthopedic surgeon, going on their bones, says they don't likely have Marfans. The pediatrician agrees. But the pediatric cardiologist and the geneticist think they need to be monitored for emergent Marfans the rest of their life.

I would like to see some statistics for emergent Marfans including age distribution, precise hypermobility indicators, etc.

[Pooka1]

Sure. We've always noticed that he's a little "stretchy" - he can bend his fingers way back, etc. Dr. Hart, though, had him press down on his thumb (using the other hand) and try to make it touch it's own arm (so, press down on left thumb and try to make it touch the left arm), and he didn't even get close. He doesn't have any other signs other than stretchiness and scoliosis.

So do I understand you to be saying that the surgeon is saying certain hypermobility indicators go along with Marfans and certain other ones don't? Is there a list somewhere?

I have gotten the distinct impression that although my kids can't do certain of the hypermobility tests, one was still diagnosed with hypermobility perhaps as a placeholder for emergent Marfans if/when the ever meet the Marfans criteria. I could be wrong.

[tonibunny]

Have you both thought about Ehlers-Danlos Syndrome? I almost certainly have this; my cardiologist was not allowed to give me an official diagnosis because it's not his area of expertise, so I've been referred to a rheumatologist who I'm seeing on Jan 4th. As with Marfan's, I need to have my heart checked every 6 months.

I have hypermobility and a bunch of other symptoms. There are various forms of EDS which range in severity and it's genetic, though some family members will have more severe symptoms than others.

[Pooka1]

I have certainly thought about and read about that and other conditions that have scoliosis and other symptoms associated with it.

As far as I can tell, the only thing that fits so far is possible emergent Marfans (i.e., they have it but don't meet the diagnostic criteria now). They also fit Marfans habitus (walks like a duck but isn't a duck :)) which is what I think and hope they actually have for a number of reasons but I can't be sure.

The geneticist, after a 3+ hour exam and consultation, diagnosed one of my twins with hypermobility syndrome but not the other (who still has no diagnosis) and told us to do the aorta/value imaging yearly so emergent Marfans is a possibility per her opinion.

The differential that we had to r/o was homocystenuria, not EDS. I understand why that is... EDS doesn't really fit with the symptoms but nor does homocystenuria in my opinion. But I have definitely read that homocystenuria is in the differential diagnosis list with Marfan syndrome so I wasn't shocked the geneticist wanted to rule that out.

I knew my girls didn't meet the criteria for Marfans before going to the geneticist. But I wanted to know what their chances were of developing emergent Marfans and when could we breath easy if they didn't meet the criteria by a certain age. The answer was never... emergent Marfans can occur at any age. So that sucks.

[hdugger]

Hi Toni,

I looked at that too, but he's just so low on symptoms - he's somewhat but not extremely bendy, and he has the spinal curve. But he's not overly tall (although he's tallish), he's not overly long in the arms, he doesn't have anything odd in his skin, his chest, or his eyes. After the discussion about hypermobility over in the scoliosis support forum, I started to think that maybe most people with scoliosis are kind of bendy and just a subset of them also have a genetic cause.

Also, for Pooka, I was really so thrown back by the idea that he might have a tethered spine, that being assured that he didn't have Marfans was pretty reassuring. One thing at a time, I suppose.

[tonibunny]

Hiya, I agree tons of people with scoliosis have hypermobility or are at least quite bendy. I think it's a good idea to consider the possibility of connective tissue disorders where other symptoms are present though. I'm 34 and have had scoliosis since I was a baby, but would never have thought I had a CTD until I developed heart/blood pressure problems, although I have a lot of minor symptoms too (including easy bruising, dental crowding, very pale skin through which you can see veins, and papyraceous scarring).

Turns out that my great grandfather died of mitral valve prolapse aged 37, my grandmother died of a brain haemorrhage caused by weak blood vessels, and my mother is so bendy she can still do backbends in her mid 60s. I am worried about her but she is completely in denial about it all.

[Pooka1]

My one kid has the odd scarring you mention. And she is not the one with the hypermobility diagnosis. She clearly has something though... she fell and had a minor scape on her chin several years ago. It never should have left a scar but it did leave one that is noticeable still. We knew that was weird but never imagined then that it could be indicative of a CTD.

I think there is a spectrum of CTDs, only some of which have been named so far.

I didn't realize EDS folks had to have their heart imaged every six months. I really hope your mother sees a geneticist for a consult at some point.

[Ballet Mom]

Hi hduggar,

So sorry to hear about your news, although I'm happy you have found an orthopedist you feel comfortable with. At least you have probably saved your son from having to wear a Milwaukee brace unneccessarily because in Wheeless' Textbook of Orthopaedics it states that "high thoracic or cervicothoracic curves usually are of congenital etiology and rarely are idiopathic".

http://www.wheelessonline.com/ortho/thoracic_scoliosis

I have read that bracing is least effective in high thoracic curves, and I have also read that bracing is ineffective against congenital scoliosis so it is a good thing, I think, that your son didn't have to try to wear that brace.

I think the high thoracic curves where a Milwaukee brace is required would be a good reason to look into vertebral stapling, although I think that may not have helped your son due to the kyphosis. Not sure though.

I wish you both the best with Dr. Hart, he sounds like a winner.

Merry Christmas and Happy New year to you and your family.

[hdugger]

Hi hduggar,

So sorry to hear about your news, although I'm happy you have found an orthopedist you feel comfortable with. At least you have probably saved your son from having to wear a Milwaukee brace unneccessarily because in Wheeless' Textbook of Orthopaedics it states that "high thoracic or cervicothoracic curves usually are of congenital etiology and rarely are idiopathic".

http://www.wheelessonline.com/ortho/thoracic_scoliosis

I have read that bracing is least effective in high thoracic curves, and I have also read that bracing is ineffective against congenital scoliosis so it is a good thing, I think, that your son didn't have to try to wear that brace.

Thanks, that does make me feel better. I'd always wondered if I'd done him a great disservice by not seeking out a doctor who did bracing (although I did suspect noone would have braced a 17 year old boy - even one who was still progressing.)

If he does turn out to have a tethered cord, we're going to have to pray that exercise will hold a curve. I believe the risk of paralysis from scoliosis surgery is quite high for these cases.

[hdugger]

Actually, looking at the reference, I'm not certain he'd be considered high thoracic. I think he's a little lower than I thought at first. His apex is nearer T5 (and not the T1 or T2 that I thought at first).

Later: Found a reference on type of curve and bracing effectiveness:

"1. Major curves occurred in three distinct areas: high thoracic (seventh cervical to the seventh thoracic vertebra), thoracic (third thoracic to the third lumbar vertebra), and lumbar (tenth thoracic to the fifth lumbar vertebra).

...

4. The high thoracic curves gave the poorest response; the thoracic and lumbar, the best."

His curve is T2 - T7. That's *almost* in the regular thoracic, but it still fits completely in the high thoracic.

[Ballet Mom]

If he does turn out to have a tethered cord, we're going to have to pray that exercise will hold a curve. I believe the risk of paralysis from scoliosis surgery is quite high for these cases.

Oh, I didn't know that. I will say my prayers for him also. Hope it helps.

[leahdragonfly]

Hi there,

It sounds like you had a very productive visit with Dr Hart, and I am glad you like him. I was sure you would. Sounds like an MRI is a very good idea, although I am sure you're worrying about the results now. I'm curious about your tethered cord comment though--would they not do a detethering procedure if he had tethered cord? I know they do in growing kids, before they will do any scoliosis surgery.

We were told that a curve with an apex above T8 is considered "high thoracic." I would say your son's is definitely high thoracic. The more typical thoracic curve seems to have an apex around T9 or T10. Bracing other than milwaukee has poor results with higher apices. I know I personally would never subject my child to a milwaukee. I was braced myself with a boston and that was certainly bad enough! But that's only my personal opinion.

[hdugger]

It sounds like you had a very productive visit with Dr Hart, and I am glad you like him. I was sure you would. Sounds like an MRI is a very good idea, although I am sure you're worrying about the results now. I'm curious about your tethered cord comment though--would they not do a detethering procedure if he had tethered cord? I know they do in growing kids, before they will do any scoliosis surgery.

I don't really have any solid information - I'm just going on what I read from the people on the scoliosis support forum who have tethered spinal cords. But, maybe this is a different case where they could untether and then do the surgery. That would certainly make me feel better.

[pmsmom]

Dr. William Lauerman at Georgetown Hospital in DC is the surgeon who performed our dd's surgery in Sept. and we couldn't be happier!

Good luck!

[Pooka1]

I don't really have any solid information - I'm just going on what I read from the people on the scoliosis support forum who have tethered spinal cords. But, maybe this is a different case where they could untether and then do the surgery. That would certainly make me feel better.

Here's my bunny take (:eek:) on the testimonials in re tethered cord...

Plenty of kids have this with no problem. I can only think of one case (not on this forum) where it was associated with some congenital condition, was of a severe magnitude, and was very low. They deemed it possibly too dangerous to try to untether.

I really suggest you get the straight dope on this because I suspect it is less of a deal than fusion based on my reading, at least in kids. And fusion is way doable. Hopefully the mothers whose kids have the detethering will come on here and correct me if I'm wrong.

[hdugger]

Thanks, Pooka. I would certainly feel better if the surgery door weren't suddenly much more dangerous to traverse.

We'll absolutely get more info once we know what's going on (MRI and appointment in one week.) I didn't pursue it too much at the last appointment because I didn't want to freak the kid out without being certain there was a reason to.

[mariaf]

I really suggest you get the straight dope on this because I suspect it is less of a deal than fusion based on my reading, at least in kids. And fusion is way doable. Hopefully the mothers whose kids have the detethering will come on here and correct me if I'm wrong.

I don't think you are wrong, Sharon. At least not in general (not sure if there is something specifically different in this case).

I believe detethering surgery, as Gayle said, is done in the growing child when necessary, usually without any problem. I am going to see if I can track down a parent or two whose kid has had that surgery and ask them to pop in :)

[Carmell]

There is a neurosurgeon in Portland, OR who is fabulous (I've heard, from her patients). Her name is Dr. Monica Wehby. If you had any questions or concerns about how any of the imaging turns out, she would be able to help you with any questions you may have. It may not be a bad idea to have a consultation after the MRI, just to cover all your bases. An orthopedic surgeon does not know how to fully read the MRI image, a neurosurgeon does. Hopefully a neuro-radiologist will be the one reading the initial imaging results.

Best wishes to you and your son. I hope everything turns out great.

[hdugger]

Thanks so much, Carmell.