Hello everyone
My name is Alice and on the 26/27 January this year my avm bleed I didn’t even know I had one until then.since then my right side has become week my eye sight again on right side is bad and my short term memory is a joke and I feel I live off pain relief
I am waiting to have gamma knife surgery in Sheffield
I was wondering if any of you could help by letting me know what to expect next
I’m 50 years old
Avm is grade 3/4 deep in base of left side of skull
Hi Ally, Welcome to this site. Use it a lot for both support and information.
Sorry to hear about your bleed. I had an AVM bleed in my right frontal lobe at age 14 then 2 craniotomies then seizures ever since.
Hopefully you won’t have to experience a seizure.
As far as what you should expect, it’s hard to say at this point.
It may be best for you to have no expectations and face each day as a new blessing/challenge.
The good news is that they feel the gamma knife surgery is a viable option. It’s a very good procedure for lots of people. Also your pain level should decrease and hopefully you can regain a good quality of life soon. Best wishes, Greg
Welcome Ally, I hope we’ll be able to help you out. 100% agree with Greg, support, information and don’t be shy to ask questions. We make a really good sounding board as well, lots of varied experiences. My AVM, a grade 2 in the left temporal, on the inner side, decided to show itself in 2016 and bleed. I was 48 at the time, didn’t know what an AVM was let alone having one. I had some impacts from the bleed but mostly recovered over time. The biggest impact were aphasia and short term memory. My short term memory is close to where it was, the aphasia shows up from time to time when I’m really tired.
I had gamma knife 6 month after the bleed, and minus some swelling at about 6 months had no negative side effects. In January of this year I had a seizure, while a singular one so far, it may be related to some scaring in the lobe, the onset was similar to epilepsy with temporal focus. Although EEGs are good for me showing no unusual activity. Hopefully just a one off and driven by a variety of factors at the time.
That is my story. Now in respect to Gamma Knife, the day was pretty actually quite enjoyable, believe it or not and a strange as it my seem. The “halo” was uncomfortable but aside from that and an IV line, non invasive and the staff were phenomenal. I had the frame installed, had a CT, MRI, did not need an angio as I had already had 2, and then picked my music and the gamma knife machine was “peaceful”. Particularly compared to the MRI. Immediately upon completion they removed the frame and I went home, some people stay but it depends on a variety of circumstances. I was home by 1:00 pm.
The waiting period post treatment originally caused me some stress, but as time went by I accepted it more and ultimately was able to come to the what will be, will be mindset. I did not have a second bleed in the lag period. I am now not being followed up at all as of this year. The seizure, well that is new and allows me to meet another segment of the neuro sciences, lol.
Take Care, and ask away! John.
Hi Ally.
It’s daunting isn’t it I was 50 when mine was coincidently discovered and 70 when it played up and I had Gamma knife at Sheffield. Here is a link to my post at the time Gamma Knife Surgery Sheffield I hope this helps.
Kind Regards
Micko
How are you doing three years post gamma? I’m hoping all nicely sorted.
Really useful link to your day in hospital.
Richard
Was this bleed in your cerebellum?
Hey Cornishwaves,
It’s been a while since I last spoke to you. Good to see you here again.
How are you? How is it all going??
Merl from the Modsupport Team
Hi Dick
I am doing OK.
I have another scan in a years time and that will show, hopefully, all will be sorted it’s all a waiting game really, meanwhile I just try and stay positive and live in the moment.
I hope you are doing OK.
Many thanks to you and all your support team. You make a big difference to us.
Micko
This is great to know and very encouraging for all. I’m doing very well, thank you.
Regards me and the team, I worry sometimes that I’m too present and it can be far more helpful for me to stay in the background to allow everyone the space to talk and offer support. I worry that by being too keen to help, to offer the words that come to me about a situation, I put off others who may have offered their words.
So it is really good to hear others’ voices and to have people exactly like you pitch in with your experience. Thank you. This community is for everyone.
Best wishes,
Richard
Hi,
I’m still improving but it’s super slow. I still can’t leave the home alone and take myself off. I find it hard finding help here as no one seems to understand me. I’m proving to be a rare complex case. Haven’t checked in on your site for awhile and felt the need for a catch up and you do come across informative information.
Jo
Welcome to the world of neurology.
Medicos love to have us fit into nice, neat little boxes, but when we don’t ‘fit’ it is often put back on us with comments like ‘…it must just be you…’ I am yet to hear of 2 patients having exactly the same journey when it comes to neurology. Some can bounce back relatively unaffected, others can have ongoing issues and often the medicos have no idea as to why.
Any improvement is a plus and I have found it is not a straight line of progression. I have good days, bad days and those days you wouldn’t wish on your worst enemy, (Well, maybe I would wish it, but they never seem to have ‘those days’). My only advice here is to ‘roll with the punches’ and enjoy the ‘Good days’. I say this because I tried to push myself through the ‘Bad days’ and ended up frying myself in the process. Don’t be doing that.
Merl from the Modsupport Team
Sorry to hear about your diagnosis but welcome to the family… there is always light at the end of the tunnel & it’s not an easy path but it’s definitely one you will slowly come out from much stronger & with a different outlook on life, in a positive way!
Please keep us posted on your journey & rest assured you are not alone… God bless!
i have a similar AVM on the left side. Originally, mine was so deep sheffiled would not help me. So im not a happy of sheffield myself. So London at barts did, and i had 2 doses of GKR. No side issue whatsoever. Have managed to almost remove all the avm now.
Little update tomorrow 10/7/23 I am travelling to Sheffield for my pre op very nervous and stressed I have everything crossed it all goes to plan
Alice,
All the best from me! I hope you read Micko’s linked story about gamma knife at Sheffield. I think it was very informative and encouraging.
I am sure the people at Sheffield will look after you beautifully.
Very best wishes,
Richard
Hi guys
Well had my pre op trip to Sheffield.what a lovely bunch they are. I was very overwhelmed when I arrived but they really were so helpful. Was told I would have about a six week wait but the next day which was yesterday I got a call I’m going in next Friday the 21st. On a plus side not so long for me to worry I guess !!!
Sounds like a great experience. And I think we all know how you feel about the date suddenly being there.
You’ll do great. Well done!
Richard