Eight months and out

[Pooka1]

Today is eight months after Savannah's fusion. She is off restrictions and is done with scoliosis per the surgeon.

One down, one to go.

[WNCmom]

Congratulations, Sharon.

Happy Thanksgiving!

Mary Ellen

[Pooka1]

Thanks Mary Ellen.

And Happy Thanksgiving to you too. I think it will be a good one for both of us (and several others).

sharon

[pmsmom]

So happy for you all Sharon!

God bless you and your dds!

Marian

[Pooka1]

Thanks so much Marian.

You will be amazed at this surgery.

sharon

[Snoopy]

Sharon,

Congrats! I bet Savannah is thrilled to have her restrictions lifted!

"She is done with Scoliosis." Does that mean her doctor discharged her and she won't be followed at all by him?

Happy Thanksgiving!

Mary Lou

[Pooka1]

Thanks Mary Ellen.

He said she was back in the general population on back issues (despite having a block spine of 10 vertebrae!). I take that to mean the scoliosis has been successfully stabilized and so she is done. He wants to see her in a year but I don't know about after that.

We have to follow up with the aorta imaging for the rest of her life but the scoliosis issue is put to bed as far as I know.

Willow realized at her last visit when her curve got worse that she is very likely looking at surgery. It really helps her to see how Savannah has negotiated this surgery and recovery and has essentially been cured. Had it gone otherwise, I think Willow would be less positive about the prospect of surgery. Small mercies.

Happy Thanksgiving to you too!

sharon

[Kitty]

That's great news about your daughter Sharon.

Best wishes to you both.
Lisa

[Snoopy]

Sharon,

Wow! It always amazes me to hear how most children are followed after their spinal fusions. Jamie was seen probably every 2-3 months for the first year after her surgery and probably every six months after that. Finally, last year at her 3 year post-op visit, her doctor said she doesn't need to be seen for two years. I'm sure Jamie is the exception to the rule, though. She developed Kyphosis above her fusion which she almost had to have her fusion extended for and also has a spondolenthesis (?) below her fusion so I'm greatful that her doctor kept such a close eye on her.


Mary Lou

[Pooka1]

Lisa, thanks for your kind words.

Mary Lou, I can only assume that our surgeon has seen enough cases to know how each one should be managed. Savannah almost certainly has some as yet undiagnosed connective tissue problem (but hopefully not emergent Marfan's). Maybe these kids are known to follow certain recovery trajectories, I don't know. What I do know is that the surgeon has called the shots on Savannah's case and is batting 1000. He is either clairvoyant or very experienced.

Although the surgeon insists otherwise, I necessarily have a (very) small amount of skepticism that Savannah is really cured. But if she is still stable in a year, I'm going to need good reasons to justify further x-rays.

I note that there was some skepticism expressed a year ago when I relayed that our surgeon felt this surgery was a long-term solution which I equate with a cure. We are only eight months out but given the surgeon's continued insistence on this point, combined with Savannah looking and feeling completely normal, I may allow myself to completely accept it.

Willow accepts it which is what really matters as she is almost certain to need the surgery. She has a big advantage in knowing a bit what is ahead on that path having witnessed it from the ramp-up to surgery to the ICU to the hospital stay to the coming home to the early recovery and finally to something indistinguishable from normal in her twin sister.

sharon

[laurieg6]

Congratulations on Savannah's wonderful recovery. What a great feeling it must be to hear that she is almost finished with Dr. appt's for scoliosis. We still go for follow-up appts. every 6 months. Alexander's posture, while much better than it was right after his surgery, still is not perfect. When reminded, he can hold himself beautifully and look tall (for him) and straight. But he still tends to hold one shoulder higher than the other. And he tends to lean on one hip more than the other so he looks a little tilted to one side.

[Pooka1]

Thanks, Laurie.

I don't think anyone's posture is perfect. A stable spine was the main goal for us.

Savannah is pretty flexible. Maybe that played a part in her being able to be derotated and straightened so much. I don't know.

I suspect the hemivertebrae situation might be dicier, yes? Hopefully your son is stable and out of any pain.

Best regards,
sharon

[Susie*Bee]

Laurie-- although this is coming from an older adult's perspective, it may still apply for your son as well. My physical therapist worked with me some on re-learning what felt "right" with my posture. BTW, I wasn't a whole lot off, just not quite right, just a little uneven in the shoulders and tilted a tad at the hips... but he said my muscles were so used to holding me a certain way, which had been tp compensate for my scoliosis, that when the curve wasn't there anymore they still continued to do that. He had me practice standing in front of a mirror so I could look and see when my shoulders were even and my hips about right. It didn't feel right at all to my mind, but mirrors don't lie. Maybe some people probably adjust naturally without practice, but it's a thought-- especially since you said he CAN stand straight when reminded. It just may not feel correct to him yet.

Sharon-- congrats on Savannah's progress. You must feel so relieved.

[Pooka1]

Thanks Susie*Bee.

We are extremely relieved for a few reasons. Beyond Savannah, had this not gone per plan, I don't know if Willow would have the positive approach she has now towards her own possible surgery. The stakes were very high from that standpoint also and that weighed on me.

In re retraining the mind/body, that is the central problem in riding. It's why many dressage arenas have mirrors. It's why it is said to take two lifetimes to learn dressage.

I have been told in order to change a muscle memory you have to do something right consistently for 10,000 times. Well that would explain why 80% of riders never make it past the beginning levels in riding.

W.R.T. the folks whose bodies just come right on their own after surgery, I assume it's the balance achieved with the surgery in all planes. That combined with the particular issues of the spine. It's probably more complicated than we think.

sharon

[laurieg6]

Our surgeon seems to think we got the best possible outcome given the hemivertebra causing the curve to have to be maintained somewhat. We've been told about standing in front of the mirror and that reminding him to stand up straight is helpful for him. It's so frustrating though because of all that he's been through. We thought his posture would straighten out fully from the surgery. He's not in any pain though (only rarely was before the surgery) and he feels great so I try not to let the posture get me down. He's still sort of oblivious to his posture and how it makes him look though. He is finally starting to think of it on his own and to straighten up, maybe 10% of the time he actually self-adjusts but usually we remind him. I think that eventually his posture will cause him problems but right now he still feels good despite it.

Thanks for the support.