Source language: English Translated by
Tantine
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 Câ€. 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
Favorite translations
Translation - English-Hebrew - I've found a little pearl
