Checking In 5 Mos Post-op

[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.

[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.

[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.

[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]

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.

[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]

(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]

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 ...

[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

[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]

And also, I was released to do things kids were not at 4 months post-op. By 5-6 months, all I couldn't do was deep sea fish (bay and surf was okay) - and I couldn't PLAY softball or golf ... but range and cage practice were okay.

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

And nerve itching is very common in adolescents. And adults.

Pam

[txmarinemom]

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

[Pooka1]

Sharon ...

Burning/itching/pain from nerve regeneration is common. VERY common.

Pam

Pam, Are they very common in kids? I suspect they might be very common in adults but I don't get the vibe from the testimonials here that they are at all common in kids.

For example, I haven't read many testimonials about kids needing much in the way of pain meds, much less other pain/itching interventions, after the first few weeks. Maybe I'm missing something.

I did re-read the symptoms of CRPS and they don't fit the constellations of symptoms ARN010 wrote. So my comment about that as a possibility was off base. The memory... so fragile.

Also, in re a lot of adjustment, my kid went from ~58* -> ~5* and much rotation to almost none. Still she was off pain meds for good after a few weeks.

One thing... she would not have been released to do cheer leading as Amanda was. She is still on restrictions until November (8 months). I'm surprised Amanda was allowed to start cheerleading at about four months. Our surgeon would have nixed that. On the other hand, if the fusion is solid, I would think the movement would help her pain situation. But what the heck do I know?

sharon

[txmarinemom]

Arno ...

I think you hit the nail on the head with "Her body has a lot of adjustment to do.".

Taking a 50° curve to ZERO is HUGE. Your last post was the first mention I'd seen of a possible CTD: Is there any speculation that's they were able to achieve that type of correction?

I, too, live for my massages - LOL. I just had my first post-op one last Monday, and OMG ... 90 minutes of all over deep tissue and subscapular/piriformis/trap myofascial release was HEAVEN.

When he first started on me, he couldn't get my shoulder blades to *budge*. With quite a bit of joint effort (much of it was ME cementing them in place ... and it took a lot of deep breathing to relax enough so he could move them), they finally started stretching out.

I'd sent him my x-rays beforehand so he knew what he was dealing with now (same guy I used pre-op). Arno, I also wish I could go every week! I am, however, shooting for every other week so things don't get so tight again.

Oh ... and because I've mentioned it in every other post where I've seen BioFreeze mentioned (LOL ... I promise I'm not a rep), give Tiger Balm ointment and patches a try. They work better for me than anything! I even got some relief from itching with it (just make sure you haven't scratched first ... ack!).

Her doctor is okay with her taking Ibuprofen? The camps are kind of split on NSAIDS (some think it retards fusion). My doctor doesn't care if I take it, but some are adamantly opposed and say nothing but Tylenol (which, of course, does nothing for inflammation) for a year post-op.

You didn't say, but I assume y'all are icing her traps as well during spasm?

Good luck to y'all, and I hope Amanda settles in and gets some relief soon. BTW, looking at her cheer pic, she seems to be much taller than the other kiddos ... how tall *is* she?

And smileskl's question about growing rods makes me wonder, what was her Risser at surgery?

Take care,
Pam

[ARN010]

Thanks for all the responses

Dear All:

Thx for all the responses and interest. Let me clarify....Amanda has muscle spasms mostly in her trapezius muscles....they become very tight and burn as a result of heat generated from the spasm. We have been giving her vicodin and/or valium 2-3 nights/week but this week have started Advil instead (with success). She is in physical therapy but there is little she can do in addition to all the exercise she already gets from her 5/day/week cheer activities. We have her stretching her ham strings mostly as these are quite tight. We have also tried the TENS unit but she hates that. Her treatment is:acupressure, medication, ice, heat, rest, not overdoing it (if possible). I am in constant contact with her doctor. He is not concerned about what she is experiencing and he states that it is common and different for everyone. Her body has a lot of adjustment to do. I can see her right side trying to go back to its former hump position although with the rigid hardware it cannot. The ribs/muscles were shortened on one side and lengthened on the other in order to pull all to the neutral position....this takes time for the body to get used to its new positioning and again it is different for everyone. She was doing pretty good until school, piano, and cheer started all in the same 2-week period (early Sept.) and hasn't let up yet. I took the sweet girl to Palm Springs during the week last month for a little hiatus from school and some "down time" and all calmed down quite quickly (as she drank fancy pineapple drinks at the pool!) We, as a family, get regular massage and she has been receiving massages since one month post-op....the girl LIVES for her massages....I can't afford to get her one every week but I would if I could...we go once a month; twice when she gets really bad. This really helps. The other thing that helps is the mentholated pain patches....they're the thin mint-smelling pads (I forget the name right now)....those give her a lot of relief as does BioFreeze. Regarding the growing rods, I could not even imagine having to take her back in for surgery one or more additional times. The first two weeks of surgery, hospital, first week home were very hard and upsetting. It was all about pain management and I was exhausted!!! I live in fear that something will "break" or the graft won't take and we'll have to do surgery again....that would be so hard. I am so happy with the result I would not even consider growing rods (they are the new technology and doctors love to use their new "stuff"). I watched a several day spine sympoisum and what I got from it is the doctors do not know everything and not every treatment is right for everyone. The rods/screws are very old, sturdy, tried and true and I am grateful that is what we did. I also got a second opinion from a Stanford expert and that was reassuring. I suggest to anyone to please obtain a second opinion from the expert in your area. Your doctor can put your films on disk and you can make an appointment with someone to review them with you. I did this and went through every possible side effect, adverse outcome, etc. I felt confident in what we were doing yet I still had to let go of my sweet child at some deep level that I cannot explain except to other parents with sick children. I was also VERY confident in our surgeon. He reviews new full spine x-rays regularly and her surgery looks terrific from the inside. Also, one last note....the sensation of "itching" is a very complicated thing...it can be nerves, skin, psychosomatic, allergic...it is a very interesting phenomena. I have also tried antihistamines (which also have a mild muscle-relaxant quality to them) as suggested by one of the docs at Stanford and that seems to help although this is prelimary info as I've only tried it twice. Anyhow, love to all of you going through this. You will make it. It is VERY UNCOMMON at this point (regardless of which procedure you choose) for anything catastrophic to occur....in fact, when I was researching I found some statistics that stated these more serious hospital admissions are actually safer as far as infection and other adverse side effects...could be that the docs/nurses pay more attention to those who are most severe....who knows....I do know that I am grateful to be on this side of it and wish us luck, we have a Pop Warner Competition in the morning at Santa Clara University (I've attached a recent picture from their Shoreline Amphitheatre competition just for fun; Amanda is the tall one standing in the middle, back row). Take care all!! Oh, and the other picture sums up how I felt when we were finally released from the hospital!!!