Fears and Frustrations

So i had a pretty successful holiday in norway which involved a lot of walking that i've sort of been training for, but since norway anytime i do any walking i have seizures during the night which are new, they involve an aura in my sleep followed by waking up to be locked into position in a very painful spasm, its like lockjaw, but all over. it was terrifying the first time it happened. i remember waking up incredibly confused and sort of gurgling in pain without any control of what was happening to me. Anyway, this has happened a few times now, its starting to get me down, obviously im scared of having unpleasant seizures but im also scared of what this means inside me head, i'm fully aware that new seizure activity doesn't necessarily correspond to growth but i know in my situation its certainly likely and hard to put it out of mind. and because its in the middle of the night again (nobody can tolerate listening to someones death fears anyway), therefore, im just regurg…

Treatment Decisions and Post OP Scan Results

I think i'm about 3 and a half months out from my op now and just getting around to making treatment decisions, the fatigue and effects of surgery are still real and heavy, my scan results came back and were unfortunately disappointing so i felt like i needed to go with a treatment option of some sort. This will probably be a long one. its 2am and ive put it off for a few days.

Scan Results
Unfortunately i didnt manage to get the same slices and sequences for comparison this time. but i will do in the future hopefully. a FLAIR sequence vs t2 should be sufficient for now.

 Old Scans in 6 month jumps.

These are two flair slices from my post op scan about a month ago. its hard to compare because of the different slice and sequence, but to me it looks like the anterior mass is now of a similar size to 6 months post op, however it seems to be heading south deeper into the brain (making radiation much less tempting). I'm assuming my brain has changed shape significantly due to the su…

3 month post op Update

General Update 
okay folks, need for an update as the last post i was about to go back in for more procedures for my hydrocephalus. that didn't happen. we didn't get a phone call calling us in. and eventually i just got better. Ive been better for about 3 weeks now. so no more hydrocephalus. still have some issues but nothing in comparison to what i had. i even went back to wales for a week to see friends and make sure my house was okay (it was). i had a good time but i got tired looking after myself. fell over a couple times and after a week i wanted to come home again. but it was a nice experiment and i feel better now i can do a decent job of self care and getting about.

2nd Opinion
so as you know the MDT in London decided they'd like me to have radiotherapy soon for my tumour. i went for a 2nd opinion with my original team in Cornwall, they disagreed and said the side effects outweighed the benefits of having treatment on my tumour at this time. this was my gut feeling a…

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…