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 pare…

Craniotomy number 2: 11 days post op

Hi all, so my 2nd craniotomy was booked in for the 1st june. nearly 3 1/2 years after the first one. this time with the same surgical team and same set up regarding surgical technique with the IMRI again, so i don't need to re-explain the procedure. This time they would use a entry site in the brain to get to the different tumour sites. This meant using the same scalp wound as before, but extending the cranial opening both forwards and backwards to get more access to the tumour that is now wider dispersed.

unfortunately i dont have access to my pre-op or intraoperative scans to demonstrate what they did. (not yet anyway). i had non contrast pre-op scans the night before and then a contrast scan the morning of which  i wasnt expecting, but i suppose it makes sense considering at this point it had been a whole 6 months since my last scan.

A few things were different  this time. i'd been practicing fasting for health reasons for a couple months before this surgery. but i think th…

Big things, SMAll things

This blog post will mostly be talking about the Supplementary Motor Area (SMA). So after seeing the surgeons this week they told me my SMA has been invaded and will need to be removed.

So basically the plan is to have a large resection of most of the tumour again, anterior, posterior and superior portions of the growth that has is occurred in the last three years. However three years ago they cut out tumour that hadn't as yet invaded important areas of the brain, (those bits were left in). this time however, they are planning on resecting the SMA because it has been invaded in its entirety now. I knew something had happened because of how useless my left hand is a lot of the time. So in the consultation i was told that i would leave surgery with a deficit in my left side. the extent of which was unpredictable, varying from lack of control and clumsiness of the left side to the complete inability to use that side. however this effect should be temporary.

Post Operative Supplementary …

Jan 01/2017 scan - surgery now necessary

Hey guys, life is okay atm, i have fairly frequent head symptoms, (dizzyness, headaches etc) but a lack of seizures so in balance its all good. my life is still plodding along as close to normal as i can keep which was the plan all along. anyway, i had a scan on 01/01/17 in my home department in wales and recently got the results in London from my neurologist. i could have the results a lot sooner considering i had the scans on a disc a month ago. but i didn't want to look at them until i had too.

so the scan results show more growth again. i'll throw the comparisons down here like last time because i found that helpful. 6 months comparison from the sagittal and 2/3 years on the axial to show you. not sure if the one the right is 2015 or 14.

As you can see the anterior portion in the frontal lobe has grown significantly this year, despite its appearance the posterior growth is more worrying as this is the growth thats into the motor cortex and is more likely unoperable and sym…

September 2016 Update

Hi guys, its been an awful long time, sorry. Things have been changing i just find it hard to keep putting them up here all the time. or respond to most peoples messages and texts as i'm sure a lot of you have noticed. For some reason one of the effects that has come out of this is the irrational dread of messaging people and responding to messages and for that im sorry. i'm sure i'll get over it at some point. (edit: after a number of messages from people apologising for messaging me after reading this i  think i should state that is meant to be an apology from me as to why it takes so long to get back to you. not a hint to stop messaging me! kk thankyou all who care :)

As for an update, i had a scan a few months ago, cant quite remember when, probably april. although this time i had the scan in my home department where i work in wales which was really nice. obviously i had to go to london for the results and to talk to my neuro-oncologist. it did show growth unfortunate…


So i travelled to London on a day off from work today to see my neuro-oncologist and have my scan with my mum and matt. The 10% of the original tumour that was left in next to my corpus callosum has been active and growing again for the past year apparently, not such good news i'm afraid.

The post contrast scan wasn't enhanced so its likely still a grade 2, which is nice considering the genetics, and, its not a surprise its back already and to be honest i'm just glad its not a higher grade Although of course, I'm very disappointed and frightened that it has started growing again. Anyway, he said the three choices we have are 1. watch and wait (recommended as i dont have bad symptoms currently, 2. have surgery again (invasive and risky) or 3. have radiotherapy (side effects, probably not effective).

As im happy with life as it as atm (minus the obvious health issues) i think i will be waiting on the next scan and kicking myself for letting my own protocols slip since i …

Personality Issues

Sorry its been such a long time since my last post. with starting work and everything else i haven't had much time and not a lot to talk about. I've been enjoying work quite a lot and everyone who works there is great but it's come with a lot of added stress to my life. and i've been upsetting people more often than i used to. i say things now without thinking them through first and have lost a lot of the social skills i used to have. things don't come easy any more and i'm quite paranoid and insecure about my ability to interact with people normally now. people, who've known me for a long time and knew me before the tumour can understand a bit more because they know i didnt used to be like this, but for all the new people i meet at work, this is the only me they know and its quite worrying.

i don't really like myself any more. i just hope it doesnt get any worse and its just a phase caused by all the changes and stress in my life. i'm paranoid becau…