Update on Reilley

[Guest guest]

Reilley is 5 and he has scoliosis(29 degree thoracic curve) with a

secondary dx of a chiari 1 malformation and syringomyelia.We found out

about the syringomyelia and chiari on the 20th of Dec.

We had our first appointment with the pediatric neurosurgeon last

wednesday (Jan. 5) and he seems to be OK. He got down on his hands and

knees and played with Reilley as part of his physical exam and really

tried to gain his trust. Reilley likes him and he seems to know what he

is doing and I guess, that is the important stuff. He gave us all the

information that we wanted to know about the surgery and gave us his

success rates and what he considered as success.

He mentioned the notion that sometimes with these surgeries the bone

at the base of the skull that is removed to restore CSF flow- grows

back, because the little ones like Reilley are still growing and

sometimes they heal a little too well. He is hoping to not have to

remove any duramatter during the surgery but if he does he usually uses

the bovine tissue with the little ones as his rejection rates are less

than 3%( about the same as he has had with using their own tissue) and

the harvesting of their own tissue entails a whole different procedure

that has a painful recovery that is not needed.

The neurosurgeon noted that Reilley's chiari -cerebellar herniation

is between 10 & 12 mm and that his syrinx runs nearly the entire length

of his spine. He would like to get us in for surgery in the next

couple of weeks but we are going to opt to wait until just after the

first of Feb. as we are changing our insurance on that date and do not

want any more insurance hassle than is absolutely necessary

We can hope to have a completely restored Reilley in a few months

and may very likely have a reduction in in his scoliotic curve. We

will have to watch him carefully over the next few years and it is

likely that he will have a relationship with his neurosurgeon and

orthopedist for a long time to come

thanks,

Gwyn -frantic in Indy

MoM to Reilley -5 and Caden-2.5

-wife to Rich (terminally busy guy)