Checking In 5 Mos Post-op

[Pooka1]

Ah, but Sharon ... Savannah and Willow both have Marfan-like signs, no?

Yes they have certain indicators but don't meet the criteria for diagnosis at the moment. How is that relevant?

Savannah has no diagnosis and Willow has a diagnosis of hypermobility syndrome.

Are kids with diffuse connective tissue stuff known to recover more quickly and with much less problems than normal kids? News to me.

[txmarinemom]

I'm still on pain meds to get moving in the morning (at 40 years old). I hit the ground (sliding feet first/diving head first to wrap around the outside of a base) every weekend. It doesn't hurt any more than it ever did. I don't need pain meds AFTER play, BTW.

Pam

[txmarinemom]

Yes they have certain indicators but don't meet the criteria for diagnosis at the moment. How is that relevant?

Savannah has no diagnosis and Willow has a diagnosis of hypermobility syndrome.

Are kids with diffuse connective tissue stuff known to recover more quickly and with much less problems than normal kids? News to me.

Relevant only in the context of extreme correction ...

[Pooka1]

(in re when folks are released to do certain things after surgery)

It just depends. Mostly on the surgeon. Mine's far more liberal than most.

Well the liberalness of the surgeon can't possibly have any control on the speed of the fusion, yes?

If surgeons are "liberal" then it likely means there is a good reason to think that the longer restriction periods are not warranted and that the other surgeons are being overly cautious.

Longer restriction periods are either warranted or they are not for particular groups of patients. There is going to be an answer one way or the other irrespective of the surgeon's thoughts on the matter.

I'd like to see the longitudinal rates of complications for folks who went back to physical activity early versus late. I don't think the study has been done.

I'm going to try to remember to ask about this at Savannah's appointment next month at which time I expect him to release her from all restrictions (except bungie jumping).

[txmarinemom]

Well the liberalness of the surgeon can't possibly have any control on the speed of the fusion, yes? ...

I doubt it, but rhBMP-2 definitely can (in adults). And even with BMP, some surgeons are more liberal. It's just the way it is ... as with everything, they vary.

... I'm going to try to remember to ask about this at Savannah's appointment next month at which time I expect him to release her from all restrictions (except bungie jumping).

LOL ... even *I'm* not stupid enough to have bungee jumping on my "to-do" list (and you know I can be pretty stupid ;-). I am planning to skydive on my 1 year post-op anniversary, though!

[Pooka1]

I doubt it, but rhBMP-2 definitely can (in adults). And even with BMP, some surgeons are more liberal. It's just the way it is ... as with everything, they vary.

Well yes BMP will speed fusion as far as I know. But it is not generally used in kids, no?

Among the kids who don't receive BMP (i.e., virtually all kids), why are some released months earlier than others for certain physical activities? Do surgeons base the restriction time on any evidence whatsoever? I suspect they do and I would like to know what that evidence is.

[ARN010]

A Couple More Thoughts and Responses

Amanda was released with no restrictions. The reason for this as explained to me is that our surgeon, Dr. Lincoln at Kaiser Oakland, is so confident in the technology and the hardware and the fact that the kids are self-limiting that he is not at all worried. Other than "overdoing it" in general, my Amanda has self-limited when needed (i.e., stopped practice, rested, or complained to mom about pain). Unfortunately (or fortunately depending on your perspective) the Pop Warner Board, despite the surgeon's non-limited release, would not allow her to "stunt"...she couldn't even act as a base (that's all cheer talk) much to Amanda's dismay, but it made me more comfortable. Yes, I was initially told to not give her motrin but the doc thinks it's okay now and it has really helped her. At this point there is nothing "abnormal" in our surgeon's opinion. It could be that release with full activity has its own benefits (muscle stretching and strengthening) and drawbacks (namely, pain). Don't know but I do trust the doctor. To answer a question someone had, Amanda is 5 foot 3 inches. She was ~5 foot before surgery and ~5 foot 2" afterward. She is quite tall. Her risser was 0 if I recall correctly and she had just started menarche (a bit earlier than average, 10 yrs old) and her other signs of maturity (i.e., tanner stage) was about 1 or less....remember she went from 27 deg curve (held with brace for 3 yrs) to 33 deg curve in Oct 2007 to 50 deg curve 1 month after start of period in Mar 2008.....she hit her growth spurt right at that time and as would be predictable for adolescent idiopathic scoliosis, her curve increased greatly ~17 degrees in 5 mos. or ~3.4 deg/month (quite a high velocity of curve progression). Hope that answered your questions. Did y'all like her picture? They didn't place at competition yesterday but our older girls squad took 2nd place and will go on to Regionals. They had 17 teams they were competing against and they did their personal best and that's all that matters. There's a little "competition is over" letdown but I think she's relieved that we start 1 day/week practice since our football players made playoffs and games only until the boys lose (max. of 3 more weeks of cheer season!) I suspect she will get better when there's not cheer 5 days per week. We'll see. I'll check-in. Hope I didn't forget anything....let me know, take care all!

[Pooka1]

It could be that release with full activity has its own benefits (muscle stretching and strengthening) and drawbacks (namely, pain). Don't know but I do trust the doctor.

So was she released to do anything assuming self-limitation right away? Was there any period of restriction?

My daughter has all screws except two hooks. She has a firm scaffolding in there if you will. Yet she has been on an 8 month physical restriction regime.

I am definitely going to ask our surgeon about this other approach in a few weeks. If there is no difference in outcome between kids who were restricted and those who weren't then that is going to definitely affect what I allow my other daughter to do if/when she gets fused.

There is either evidence in hand or there isn't.

[Pooka1]

My niece has gone thru this surgery twice. The first time, the Dr released her fairly quickly (about 4months) to return to basketball which she did. When he had to go back in to extend the fusion 15 months later due to kyphosis he checked the rest of the spine and had to refuse it. So her restrictions after the second surgery were for a full year. When he looked at the x-rays, the spine looked fused but when he went in the top portion was not.

Holy cow!

So does this mean that the reason for restrictions really is to avoid pseudoarthrosis?

I had thought so but then was persuaded by the arguments that ARN010's surgeon put forth that kids will self-limit enough and that the rods/screws would hold no matter what the heck you did if you aren't inducing excruciating pain I suppose.

Man am I confused.

[ARN010]

No restrictions day 1

Amanda had no restriction day 1...although she could barely walk day 1. I don't know if it's different for different cases. Hers was a straight forward right curve no rotation, two screws at 10 levels and a rod on each side of the spine about a foot in length. She is all hardware (we call her the "terminator" part metal part girl). She started cheer practice at 3 mos. post-op. Not sure why some restrict and some don't. Dr. Rinsky (my 2nd opinion at Stanford) is not as liberal; he restricts for 1 year. Dr. Lincoln has never after hundreds of these operations had an adverse affect, a rod break, etc. by restricting. He even told me that he releases football players. I suspect if we were ever in a car accident Amanda's back would survive it the best; it's pretty rigid stainless steel. This summer, however, I did restrict Amanda from roller coaster rides; she went on one fairly gentle ride and it did cause irritation. She was also banned (by Mom) from water slides. The big signs "anyone with recent back surgery.....can cause serious injury or death....blah blah blah..." really freaked me out and I hadn't asked the surgeon about rides.