I've found a little pearl

[Ruth]

Hi All

Sorry I've been absent from TFD for such a while, but I had major
problems with my computer and was unable to connect to Internet since
October.

As you know, I was looking for a Professor of Medicine capable of
dealing with my over neglected case.

Thanks to TFD and particular to ***, I have found a little pearl, at
the Timone Hospital, in Marseilles.

This Professor is specialised in digestive surgery and is a
proctologist. What's more, he's the Pudendal Neuropathy specialist for
the South East of France. He has already dealt with both congenital/
perinatal and post adolescent SCTs.

After having sent me for one or two examinations which were missing
from my file - an electromyography (EMG) and a calculation of my colon
transit time, I saw the Professor again last Tuesday.

The results of the EMG are far from "perfect" and show a more extended
zone of nerve damage than we had hoped for. The neurological lesions
are to be found at the lombo-sacral level and thus imply several
nerves, not just the pudendal nerve alone.

In the light of these results, it is no longer possible for him to
propose the graciloplastie (operation consisting of encircling the
damaged anal sphincters with a muscle taken from the thigh). Not only
the nerves on the left hand side are too damaged to allow this to
function, he is concerned that this would weaken my left leg too much
(it's already the weaker of the two).

So, we are forced to fall back on "plan B" or even "plan C". If I have
understood things correctly, the former consists of an artificial anus
(in real plastic) together with a Malone's intervention (very similar
to a Mitroffanoff but to wash out the large intestine rather than
empty the bladder). Plan C would be the Malone's with a permanent
colostomy.

I go back to see the Professor mid March, when we will take a final
decision. In the meantime, he has given me a treatment to try slow
down my colonic transit time (though he says there's not much hope of
this changing anything). I think he is giving me these two months so
as I can get used to the idea of the colostomy.

He has also referred me to the specialised pain clinic (at the Timone
hospital too), in order to adapt my treatment in the light of the
EMG.

I told him about TFD, obviously, and he seemed genuinely interested by
our approach to the question. He's asked me to send him our link in an
email. In return, he told me he is part of a French governmental
project (together with other Professors - paediatric) for a better
management and follow up of the type of congenital malformations we
are interested in.

Hugs
Ruth (SCT Survivor - 1962)

[Pologirl]

Dear Ruth,

Your post mentions a final decision to be made in March. What has
happened and how are you doing now?

Isn't it wonderful to deal with a medical specialist who has
experience treating your specific condition?

Pologirl