Re: Liza

[Guest guest]

I think surgery would be a good choice now. If she were asymptotic but had

the TC & diplomyelia diagnosed, I would suggest different. Because she

already is symptomatic, its unlikely they would resolve. More likely, they

would continue to get worse as she grows. Is she potty trained? I would make

sure she has seen a urologist to determine if she has neurogenic bowel

and/or bladder. Those conditions you want to catch early if they exist

because she could damage her kidneys if left untreated. You sais she already

has scoliosis. Her cord is likely stretched tight, so as shr grows, the

vertebrae cannot lengthen vertically. If the TC is left untreated, i would

expect this to worsen with each growth spurt. While you just joined the

list, anyone who has been here for a while, knows I am pretty conservative

when it comes to surgery.

As for doctors, I recommended Dr. From in Chicago, IL or Dr. Fuchs @ Duke in

North Carolina.

I have a friend that is from Ukraine. She has a spinal cord injury (we have

a lot in common with SCI. The can even develop TC from scar tissue from the

surgery to stabilize the spine. Different cause, same problem and same

treatment). But, she has gone back to the Ukraine for a few of her

surgeries. She also goes back often for the summer for rehab. She says they

are better than US facilities in many areas. She feels she gets better

treatment there. Unfortunately, I don't know the name of the docs or

facilities. I will see if I can find out. I know for a fact she had her

Harrington rods removed in Ukraine because they wouldn't do it here and she

wanted them out because they were causing her pain.

Another interesting fact is that she was born in the US (or came here VERY

young, yet still prefers Ukrainian facilities for treatment). Many Americans

think healthcare in others parts of the world could never match up to ours.

But, having used both, she goes Ukrainian. I do know the rehab place she

uses during the summer is on the sea. I don't think there can be many rehab

facilities that treat SCI/D by the sea. She swears it is the most beautiful

place. The landscape alone can help her improve.

Best wishes. I'll see if I can get a contact for her and ask. I haven't seen

her in a couple years, but we have a mutual friend who may be able to help

me.

Best wishes,

Jenn

~~~Sent from my Samsung Infuse 4G~~~

> Hello all,

>

>

> My little daughter (3.2 year old) has TCS and diplomyelia. From symptoms,

she has weak legs and some scoliosis. It influences to the her bearing and

the gait now and will be influence in future. Also, we know about

probability of symptom worsening in future. Now we have had few conclusions

of native (we are from Ukraine) and foreign neurosurgeons. Opinions are 70%

to surgery. But all doctors said about risks, if we will do surgery. We

would like to receive more opinions. Could you write us

>

> - your opinion about necessity of surgery in this age(now, before symptom

worsening)

>

> - names of hospitals and kid's neurosurgeons, where good quality surgeries

are done and good kid's neurosurgeons are working (any country)

>

> Thanks a lot!

>

> Dmitriy

>