Hello,

I am writing this in hope someone can relate to this predicament and maybe offer a form of help, or in the very least the knowledge that I am not the only person in our world that suffers like I do on a daily basis with this awful illness.

In 1983 I was diagnosed with a Craniopharyngioma (to the best of my knowledge). The surgery I underwent involved the incision of a CSF shunt.

I made a wonderful recovery and subsequently returned to a normal lifestyle for 20 years.

In 2003 it became apparent that the tube leading from the CSF shunt on the right hand side of my head, had begun to deteriorate. This produced a formation of fluid in my neck which was clearly visible to the naked eye. Samples of the fluid were taken by an ENT Anaesthetist which was confirmed as CSF by test strips. I was then referred immediately to a Neuro-Surgeon.

The pressure builds up a number of times daily and has become quite "audible" both by myself internally and also by my wife who can hear gurgling from my head and down into my abdomen. Along with the draining comes extreme pain which is variable from time to time in intensity. Its is most noticeable and painful first thing in the morning and I am usually woken by the pain itself. I have found that by moving from a horizontal laying position to a more vertical sitting position in bed helps the drainage, but as the tubes have mostly disintegrated this can be quite sporadic. I have also found that the drainage makes me feel quite hungry and a small quantity of food seems to aid the drainage (not sure if this is normal).

Approaching my current Neuro Surgeon (not the one that performed the initial operations in the eighties) he seems very reluctant to operate due to the danger involved in messing with something that has been inside my head for 25 years. He has stated that as a last resort (he also stated that he didn't want to do this) he would put another one in on the other side of my head. He seemed quite relieved at my decision not to take up his offer and asked me to go away for another year.

As much as I am in no danger from this at the moment, I must admit I do worry about how far this shunt can deteriorate and will it eventually stop working. I know I would be probably fully aware of the situation should it stop working as I am told it would cause the pain I initially had before surgery.

Can anyone assimilate to these problems I am having?

What sort of pain relief management/therapies are available for this.............I am currently taking co-drydomol?

Any help/suggestions/advice would be gratefull appreciated.

Many Thanks in advance