Hi,

I think that they are going to find problems with even the "newer surgeries"
like the Rhizotomy and the Baclofen pump for the following reasons:

The Baclofen pump is already experiencing a lot of problems with people who
have a spinal fusion done afterwards. Many will eventually develop a
tolerance for the drug just like any other ones on the market. There may be
problems with allergic reactions over time and much more. I know people who
have had to have the pump removed for several reasons already. Once you
remove the pump, ALL of the spasticity returns within a short time. It is not
something that removes spasticity permanently, only masks it.

As for the Rhizotomy, I can see a lot of potential problems with it in the
future. There are already reports of high incidence of spinal scoliosis, and
hip dislocations even after the Rhizotomy. Then there's the question of how
stable is the spine going to be after you've removed bony tissue and nerve
rootlets have been cut over the years. There are also reports of "total
reversals" years after the surgery has been done. The question also is w
hether or not the nerve rootlets that were cut regenerate themselves, or if
new neurons are finding the same pathways to renew the spastic areas over
time. It has not been proven as of yet whether or not it really reduces the
need for other "traditional muscle lengthening surgery" after the fact. One
report I heard said that over 70% of the kids have ended up with at least one
muscle lengthening procedure after the Rhizotomy so we are still going to
have the same issues of wear and tear on our muscles and bodies in the future
as this first generation is already facing.

I do however, hope that instead of looking into surgeries and injections as
the "protocol" for standard treatment for CP in the future, that HBOT will
become the standard therapy along with horseback riding, EEG biofeedback,
nutrition, and other "alternatives" that can and possibly will "retrain" the
brain patterns far better. When this happens, then they really will have made
PROGRESS in treating CP and eventually "finding a true cure" for CP through
these avenues. It would be GREAT if these hospitals would put every child at
high risk into a HBOT chamber now while they are still in the hospital and
start treating them once they are "stable" medically, of course, and then see
if that really reduces the incidence of CP and much more. Then there wouldn't
be as much of a need for all of these medical stuff in our lives from the get
go.

Getting off my soap box now.

BTW, for what it is worth, I did write a questionnaire a few years ago for
people with CP. I have a separate one for children, teens and adults so if
you want to use that instead of creating a new one, let me know.

Dina