Hello everyone - recently I’ve been reading quite a few posts and ended up feeling a little bit like a voyeur… so I think it’s only fair to say hello properly and join in. So here’s my story by way of an introduction.
In February I was at work and realised that I couldn’t read a spreadsheet. I put it down to tiredness and thought no more about it really. The next day I had the same problem, but also words were out of focus. After about a week I informed my boss that my screen looked like a magic picture and booked an optician appointment. The optician sent me to A&E. A&E gave me a CT and a bed in AMU. AMU pronounced that my results “couldn’t be described as entirely normal” and blue lighted me to Addenbrookes. Addenbrookes defined a 3cm AVM which sits between the right side motor function and eloquent speech (sorry my technical language is nowhere near as advanced as I’m sure it will be soon enough).
I was unnerved by this diagnosis of course, but fairly laid back mainly based in the fact that I had no idea what an AVM is, and because I hadn’t been troubled significantly. It took another optician to point out to me that it isn’t normal to have headaches 5 days out of 7 - and the neurologist noticed the foot-drag that I had thought was just the onset of late-middle age.
After several months of inactivity and trying to push the uncomfortable truth to the back of my head as it were, I ended up at Sheffield Hallamshire 8th October. There, a second consultant told me that embolism isn’t an option - and neither is surgery because of the position of my AVM. So I have 2 choices - do nothing with a 50/50 chance of a bleed, or STS from the GK (I know some lingo now) with associated risks. And nothing can guarantee that my head won’t pop ay any point… something I imagine that many on here found as hard to hear as I did.
I signed up to the GK with the option of changing my mind and looked about for something that could help me come to a decision. So here I am. AVM Survivors. That sounds like something I can get on board with.
I would like to thank all those that have posted about the side effects of GK treatment… your posts have given me the confidence to choose to go ahead with the GK and not look back. I have widended my research on here and have been reading many, many of your stories. It’s made me realise that I am lucky in fact. And although none of us deserve this, we are, as AVM Survivors, lucky.
Welcome! I think most of us do some lurking before joining so no worries, I did laugh when you referred to feeling like a voyeur! Getting our heads wrapped around the news is really difficult for sure. My AVM decided to show itself via bleed, and the journey began in May of 2016. I had GK in November of 2016, craniotomy was an option but not recommended as mine was in a less than great location.
I am now AVM free, but do have a little scar tissue left behind and had a seizure in January of 2023, am on Keppra, but no recurrence. Knocking on wood as I type this!
We have a ton of experience here and an exceptional community so don’t be shy! Take Care, John
Thanks John and hello. I was told that it’s very surprising that I haven’t had any seizures to date, and that’s one of the aspects that scares me if I’m honest. So I am rooting for you to stay seizure free for sure.
Tim, welcome. Thanks for joining in the discussion. Good luck with the Gamma Knife! I really hope it works out for you. I came out of my rupture with left side paralysis and I really hope you don’t have to go through that. Anywho, I don’t want to drone on. Good luck with any procedures bro-ski.
Welcome to the family & glad you took the time to post on here, as I believe many posts can comfort a person reading out there.
Sorry to hear about your diagnosis but confident you’ll soon join many with posting your journey & successful survival… I’m sure many ppl here can help out with their experiences with GK that may assist you… God bless!!
Hi im lisa and i have just had suregery 3 weeks ago in the first 2 weeks i had numbness in my right foot but fingers crossed its layed off now i was given the option of gk but surgery was more effextive for me wish you all the luck on your journey this group has helped me feel not alone hope it does that for you 2
@TimTheTeeth
Welcome Tim
At least you have some treatment available. Gk wasn’t an option back in 1990, when i had surgery.
You may get risks and side effects from Gk but a bleed could kill you or cause big deficits. Rejecting treatment is your right but again carries risks.
My advice is to get as fit as possible and strengthen your body before treatment so that your body is ready for the recovery period.
It sounds like you’re on tour of the UK neuro centres having been to Addenbrookes and Sheffield already. Nottingham and Southampton are also great.
Hi TimTheTeeth,
Welcome to the group! Lots of people here have been to Sheffield for gamma knife so you should find plenty of stories and advice on what to expect. I was there five years ago and can say that they are one of the most experienced centers in Europe for AVM treatment, so you are in good hands. The risks of radiation are real, but gamma knife is considered a generally safe and effective treatment for certain AVMs, and is non invasive, so a good first choice for people like us with surgically inaccessible AVMs.
Welcome @TimTheTeeth! It’s really good that you found us, though never ideal that any of us should need to go searching for a place like this!
Have you got any questions we can help with? It sounds like you’ve done a decent amount of reading already, which is excellent. I’m an embolization survivor from back in 2016/17. I discovered mine because I could hear it and it got louder and louder over time, so I became sufficiently suspicious of it to see what it might be according to Dr Google. Finally I found a web page from the American Stroke Association that included things like “pulsatile tinnitus” (what I could hear) “AVM”, “DAVF” (my particular type of AVM) and obviously the associated stroke risk and had my first of several “oh, sh*t!” moments and went to see the doc.
Have you got a rough date yet for gamma knife? Are you OK with it being some distance into the future? Anything we can help talk through, just say.
Hi Tim, great post. On somewhat of a similar journey, my daughter had an episode where she had numbness in her arm and face for about an hour 2 years ago. She had MRIs and they assured her it was an optical migraine. But then the neurologist said, also you have a small AVM. Just watch it every year and dont worry about it. And we didnt give it another thought.
Fast forward a year later, she had a follow up MRI , but this time the new neurologist said, this is an AVM, you need to see a specialist.
We found the best folks in NYC and they did more tests.They said you can operate, just watch it, or Gama Knife. We have seen 2 Gama knife specialists since then and a third we will see tomorrow. Seems to me from all my online research, for a level 1 AVM Gama Knife should be a good option. I find it difficult to just say leave it , given the odds of a bleed that they tell me.
Where are you looking for the Gama Knife?
I’ll be thinking of you all today then Mike. In Britain we don’t really have the same “choices” of where to go for treatment - unless you behave in a very un-British way… but I have utter faith that our often threadbare system still lists the best people - and for me they’re based in Sheffield.
Best of British to you Mike - which over here is a crazy way of saying good luck.
Hi Tim,
Sorry to read of your situation.
Just a practical point for you if looking for a hotel the night before in Sheffield, we used the Halifax Hall Hotel which is close to the Royal Hallamshire - five minutes by taxi.
We pushed the boat out and booked a suite - which for £120 included a bathroom bigger than many hotel rooms we have stayed in, and the room had coffee machine, sofa, fridge and was clean and calm.
Sheffield Botanical Gardens are at the end of the road so it was quite nice to have a quiet walk there after checking into the hotel.
We skipped breakfast as it was a 7:45am start with the GK team, and the team at Sheffield were professional and very thoughtful in their care.
Good luck.
Best of luck Tim, I’ve watched videos of Dr from around the world since this came up, and it has made me think about the different systems. It seems in the European countries they will have something of a center for things like this, vs the US where it is more distributed and you have to find who is developing a reputation for it. I feel like there are some benefits to the Europe model for sure. sounds like they center is Sheffield for Brittain. Bona Fortuna Tim, (American but also Italian :))