Questions for the Surgeon

Today was the check-up meeting with the surgeon that did my Biopsy, he went over the diagnosis again. Just to make sure I understood everything that was happening, and then asked if I had any questions.

I had a list:

I wanted to know how my progress would be checked, and he said the next check would be an MRI scan about Six weeks following the completion of the radiation therapy unless anything happened earlier to cause concern. I was quite surprised that it was so long. but he explained that checking up earlier would be unlikely to show the effects of the treatment and does in some cases show a worsening if too early.

I said that my seizures were mostly under control but I could not exercise without bringing on a focal seizure. He asked if I had had spoken with the neurologist (a Professor no less) who was responsible for the overall coordination of my case. I said I didn't even know that there was an overall coordinator let alone who that was, he was most embarrassed as this guy should already have been in contact with me. He promised to contact him immediately.

I asked if he recommended any dietary supplements and he said there is no strong evidence that any might help, and advised against any major changes in diet that might upset the treatment.

I wanted to know if its likely I'll be able to drive again. Yes, as long as seizures are under control and I get a clear EEG.

He agreed to get a full set of the hospital reports and scans on CD to me (I needed pathology and MRI reports to join the Virtual Trial)

Carol asked the 64 Million Dollar Question; what is likely to happen to me over time?

He explained that Brain tumours do not replace brain cells so all the effects are caused by the continually growing tumour placing pressure on the brain. The most severely effected areas will be those close to the tumour. In my case the most likely early functions affected would be:
Ability to discriminate between sensory stimuli on the RHS (already have a heat sensitivity problem). Ability to locate and recognize parts of the right side of the body, ability to write. Death is likely to occur due to excess pressure on one of the essential functions in the Brain Stem.

So there you have it.