First of all, a big thank you to everyone for contributing to the website. Knowing some of your stories has really helped me come to terms with having an avm.
I was first diagnosed with a L paracentral avm a few years ago after many years not knowing exactly what was wrong with me – frequent migraines, vacant periods, auras, thumping sounds in the head, eye pain, fatigue beyond usual, weird sensations down the right side, especially after working lates or more intensive periods. The doctor thought it was odd as I was totally healthy otherwise. Anyway, the doctor had to write a number of referrals because nobody would take me seriously, blaming stress etc… until I was finally given the diagnosis during a cerebral angio shortly after my consult. Fast forward to today and now having time to think about things I have decided to schedule for SRS which I have been told looks good from my perspective. I know everyone’s case is different, but I have been given lots of advice about what I need to do in terms of lifestyle modifications and outlook. For example, I was weightlifting but now I’ve told I can continue training but as far as maintenance and can still attend comps as an abserver. This keeps me in the loop and a part of the sport so I am happy with that. The change of pace has been good in a way because I now have time for others things. However, due to the nature of my job I was also advised to apply for reasonable adjustments but work seem a bit lost because unruptured avms aren’t listed in their policies. Does that sound familiar? I have considered going down the legal route but don’t want to burn my bridges just yet.
Thank you for listening, it’s good to finally get some thoughts down on paper.
Hi Blighty, Welcome. Frequent migraines seems like it may be a serious “quality of life issue,” regardless of whether the docs can figure it out.
As far as the lifestyle adjustments you’ll have to make… it’s not fun, but get used to it. The aging process and 2 hip replacements have caused me to sit in the lodge while friends and family are on the slopes. I was a very good skier so it’s a bitter pill to swallow.
Good luck on your tests and best wishes, Greg
Welcome! I had gamma knife in 2016 following a bleed for my left temporal AVM that I had no idea existed until it decided to make itself known! I am now no longer being followed by my Neurosurgeon, but did have a seizure in January that has presented a couple challenges. Might have been caused by some scaring and shrapnel left behind…I used to lift a fair bit of weights and still do but have swung to far more cardio. I always followed by neurosurgeons advice. I started out after the bleed of walk only. After 6 weeks it was light weights and jogging, after 3 months it was basically whatever I did before.
There is a fair few of us SRS folks here so don’t be shy with questions! Take Care, John.
Hi,
I’m also UK based, Staffordshire to be precise. And I’ve had 2 lots of Gamma Knife up in Sheffield (1996 & 2001) plus a variety of other ops etc.
I still work part-time and have reasonable adjustments to do my job although it’s NHS so probably more au fait with adjustments than a smaller employer may be.
If you have any questions feel fee to ask.
Thanks Richard, had to go away and think about this real hard in the beginning but luckily I found a good occupational therapist to help fight my corner. Thanks
Thanks VickiC do you mind if I ask whether you applied for reasonable adjustments when you were first diagnosed or was it something that came into play later? I’m really sorry to hear about your story after reading your bio! I hope you don’t mind. I’m NHS as well and funnily enough was the person who used to signoff things like these all the time as a manager. I can’t say I’ve ever denied anyone their right to privileges. It means something else to be on the other side.
hi, i had 3 bleeds during terrible AVM - and then GKR twice (2004 and 2008). Ive always kept up with my sport, 5 a side, tennis, cycling, never ever stopped.
Thanks Rich. Good know there’s others out there who won’t stop doing what they enjoy! It’s been a real blow to be told you cannot do things to the max (at least for a while yet) but I have been out on the greens working on my short game as well. Thanks again!
Hi @ForTheWin and welcome! I’m offering no legal advice because I’m no lawyer. However, as a former employee of a local company in my area I told my supervisor about my AVM upfront. They generally worked with me for an accomodation of not working night shift. However, when I let them know my vision as limited because of prior bleeds so it took me a bit longer to do some things, eventually they let me go. I did end up being approved for disability but in retrospect, I should have started the application process prior to being fired.
Hi @randombeggar and thanks for the advice. Thankfully I have a really understanding OH department, so it’s more a case of adjustment over being let go