Update, 1+ years post-op

April 18, 2010

Well my 1 year anniversary came and went without big occasion in January. My husband and I went out for a quiet dinner to celebrate, something that was hard to imagine a year ago.

This week I had my 1 year follow up with my surgeon. My MRI showed a clear head with no sign of tumour re-growth. My next follow up will be in 2 years, and I suspect I will continue to have these follow-ups for 10 years based on a 7% risk of recurrence in that time frame.

Still no smell, but you know what? It’s been so long now, that I don’t even think about it.



I blogged about early detection of brain tumours a while ago. Turns out the Brain Tumor Foundation has made this a reality through the Road to Early Detection initiative. 

“Road to Early Detection is an initiative of The Brain Tumor Foundation aimed at broadening public awareness about brain tumors and the urgent need for preventative brain scans. With the introduction of this campaign, widespread early detection of brain tumors will be available to everyone.”

“The launch of the Mobile MRI Unit in November 2008 marked the start of the first-ever national campaign promoting early detection of brain tumors. Road to Early Detection focuses on outreach to communities – particularly for those under-served in the five boroughs of New York.

The Mobile MRI Unit will continue to set up in places where people work, study and live in order to make brain scans, and thereby early detection, accessible and cost free. Dr. Patrick J. Kelly, Founder and President of The Brain Tumor Foundation, maintains, “The only way to detect a tumor early is through the use of MRI brain scans. Regrettably, by the time brain tumors become symptomatic, most are incurable.” In the 4 short months since the Unit has been traveling, several brain tumors as well as MS, Alzheimer’s and other abnormalities have been discovered.

This year more than 300,000 Americans will be diagnosed with brain tumors. About a million are walking around with one and don’t know it – 25,000 of them are in New York City alone. While there are no preventive measures as yet, the impact of brain tumors can be vastly reduced. Detected and treated early – they can be completely eradicated. MRI brain scans are safe, painless, non-invasive, emit no radiation and take only ten minutes. Scans are available by appointment only and can be scheduled by calling 877-SCAN-NYC (877-722-6692) or visiting www.roadtoearlydetection.org.

This service is for those who are asymptomatic and in the US. Hopefully this service is sucsessful and the idea spreads North to Canada.

I have a Mac both at home and at work, and if it wasn’t for Parallels I wouldn’t be able to look at all those MRI and CT scan CDs that pass through my hands. Unfortunately I don’t like polluting my Macs with a virtual PC! 

Luckily I just came across this incredible software called OsiriX that not only allows you to view your MRIs and CTs, but it does a whole lot more than that. It shows you the standard flat slices, but also translates the original images into 3D, 4D, fly-through sequences, and SO much more. 

Even Apple is talking about it saying it can even be used through iChat AV, viewed on your iPod and in iTunes, stored and shared on iDisk, and also uses Quicktime VR.

Here are some examples:



3D Volume Rendering from CT (Quicktime)


You can go see many more examples of what the software can do here.

OsiriX is freeware and you can download it here.

Now I just have to go get copies of those scans again so I can try this out, you can guarantee my surgeon will want to keep the ones I have already given him!

Great link JTed.

Pre-Op testing

January 7, 2009

Well, pre-operative testing is now booked for 19th Jan. It will take 2-3 hours, then I am free to go… only to come back at a predicted time of 6.30am on the 28th Jan for the real deal. 

Got my MRI results back yesterday. The radiologist likes to comment on every nuance they see in your brain, saying there are a zillion extra problems with you. Luckily I am seeing the Neurologist today and hopefully he can look at the MRI for himself and tell me what’s worth translating from the radiologists report.

This is the little bugger

December 19, 2008


A screencap from my MRI results from yesterday. Yep, thats it, the round light coloured thing.

MRI noises

December 19, 2008

This is what an MRI sounds like. Thanks Lacey for the link 🙂 Now when you listen to these sounds individually, you need to actually  imagine several different ones at once! And VERY loud!


December 18, 2008

Today Roger and I drove over the border so I could have an MRI. Buffalo MRI is a truly luxurious facility to beat the Canadian system with. 

I had to change into rather “sexy” pink scrubs and was then led into the MRI room. You can select what vista you want projected on the walls of the room. It is all very glam, but once you are in the machine you can’t even see the tropical beach you selected so it’s kinda pointless. I think the technicians like it though! 

I got to use one of their brand new (this week) machines. The tube they slide you into has no sides to it so it is supposed to be better for claustrophobic people… not that I am super claustrophobic but I’ll go for anything that makes it easier. 

Before they slide the bed into the teeny tiny tube they put headphones on you (so you can listen to music and hear the technician talk to you), then they put a cage over the top of your head, then they jam stuff between your headphones and the cage so you are truly wedged in. They then proceed to insist that you DO NOT MOVE. How the hell am I supposed to move inside this contraption?!

The bed whirrs and you slide inside the tube. I swear there is 4cm between the top of the cage and the top of the tube, and only 10cm from your forehead to the top of the cage. It’s a wee tight in there. Then…. BANG, BANG, BANG, BANG, BAAAAAAAAAAAAAAAANG. Think jackhammer for 30 minutes.

Now I have a headache!