2 Month Post Op Complications and treatment options

Things haven't gone so smoothly this month. Last time i had a craniotomy the swelling on top of my head head had died down within 5-6 weeks along with the pain (as far as i remember), however, this time its been coming and going constantly. Alternating between good days and bad days without any reason that we can tell.With the bad swelling obviously comes a lot of pain in my head and around my scalp. Cognition and Mobility is also compromised pretty badly.The pressure build up causes pain down my neck and back as well, at its worse i need help to get up, and i tend to spend the days in bed. It also causes nausea and vomiting.

Maybe 3 weeks post op this got to the point where i was unable to hold down any food and went to my gp who referred me to A&E who CT'd me and sent my scan back up to London who asked for me to be admitted untill they had a bed available to sort my hydrocephalus and meningeocoele out. So i had about 4 rough days on a neuro-ward back home where my parents live waiting for a bed and an ambulance to take me up to london. So not long after i had an ambulance ride up to London tied down to a stretcher which seemed quite OTT at the time. as i wasn't able to move around and all my weight was sitting on my coccyx which is still sore a month later.The drivers were great though, really kind and allowed my parents to come with me.

 When i got to london i was put straight on a nil by mouth list for surgery the next day with a plan to put a shunt into my head and down into my abdomen to drain the excess fluid. Anyway the operating list that day ran over and my procedure didnt happen. It was going to be rescheduled for later in the week.Which was fine with me because i really didnt want a shunt, heard far too many horror stories. As the week progressed the symptoms of hydrocephalus faded away and the swelling dissipated, which meant my team considered letting me leave without treatment and see if it would fix itself.

At the end of that week i had a post op and oncology clinic at the McMillan centre in central London. The post op with Mr Kitchen was fine and easy as everything was going okay at that point. Meeting my new oncologist was a bit more intimidating as talking about radiotherapy and chemo when previously being told the genetics of my tumour aren't really responsive to them and its more of a last resort type of thing makes it feel a lot more real. I was told my tumour had become more aggressive in terms of mitotic action.so the cells are dividing faster than they were 4 years ago. i asked to retalk about treatment after my next scan which is september. i wouldnt be able to have radiotherapy with such an unstable brain right now anyway. the plan was 5 fractions (sessions) a week for 6 weeks.

The most frustrating part is still my PTEN gene. i was tested for it and given the results to research but the only response i get despite it seeming so significant in research is we don't consider that gene.

Anyway since all that i've been home with the same ongoing issues as before with the hydrocephalus, and im now back in a queue to get a bed in London. I think this time i'm having pressure catheters inserted into my ventricles to measure the pressure changes, attempting to see whats causing it and what the best way to fix it will be (this is still most likely a shunt).expecting to be back in london sometime this week so hopefully i have the energy to update you after and that my post op recvery finally starts to happen


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