Parent seeking input from adults who had scoli surgery

[flerc]

Flerc,
MaryKay lists her daughter's curves as 66 and 58. Clearly surgical territory. I am sure if SpineCor (or any bracing for that matter) was appropriate for her their orthopedic surgeon would have recommended it.

leahdragonfly, surgical territory is a denomination, it not necessary imply that surgery is needed. That is what surgeon says, but may be wrong at least in some cases. I think Spinecor is seen by surgeons as other alternative method, or other brace, so they not think that it could work.

[jrnyc]

hi marykay
the technology that is available in 2011 is as good as it gets for now, according to the
surgeons who do the surgery...
i keep hoping that flexible, bendable rods could be developed...but the several surgeons
i have consulted with for my own surgery tell me that, for now, there is no material that
bends that would be strong enough or give enough support to the spine...
the only new-er aspect i know of is the minimally invasive approach...
it used to be that minimally invasive approach was available only
for fusion of the thoracic area....now it can be done for fusion all the way thru the sacrum

you might investigate to see if there is a surgeon offering MI approach in your area...
the surgeon could evaluate your daughter's curves to decide whether that surgical
approach would be appropriate for her situation...MI causes less tearing to muscles and
less blood loss, according to the surgeons who use the technique...

best of luck
jess

[AMom]

Hi Mary Kay,

Did you go ahead with the surgery? If you haven't, but decide to do so, I can't respond to the surgery itself, but can comment on the special needs aspect. You already know to expect an increase in the amount of work that will be required for your daughter to regain her level of independence. You may want to consider speaking with her doctor & therapists to determine two things: 1) her mobility restrictions immediately after surgery and 2) her expected range of motion (ROM) after recovery.

Prior to the surgery, you may want to decide how to keep her safe with regard to post surgical movement; this will depend on her level of functioning. I have found it to be important that everyone understands the child's needs, work together to figure out how they might be met, and who will be responsible for meeting them.

You and the rest of her team may also want to write new protocols so your daughter can began working on the new skills she will need once her ROM is altered by surgery. As you know, it can take awhile to reset learned behaviors. Having the new skills in place may reduce her frustration after surgery. It can be very helpful if everyone is working together, so you may want to consider calling a meeting with her school to amend her IEP. (Assuming she has one--don't know where you live.) This way, they can work on her new life skills as well.

I sympathize with your concerns. Since you are already considering the input from the orthopedic surgeons as well as what you personally know about your daughters' abilities and needs; I am sure you will make the best decision you can for her. That is all anyone can do.

I wish you and your daughter the very best.

AMom