Hi All i am new to the site. My name is Matty. i thought i had it tuff but i have been reading a few posts on here and i aint that bad i suppose.
At Christmas just gone i notice i couldn’t read the question on the cards of a game we were playing with the kids. i ignored it till the week after when i started back at work and realised i couldn’t see my emails properly.
i booked into spec savers to get my eyes checked out. they found some bleeding at the back of my eyes and my peripheral vision was v bad, they sent me to my doctors.
My Doctor booked my in right away for a MRI scan on about 7.1.2017. The next day my Doctor rang to tell me i had a funny group of blood vessels on the left side of my brain and he had contacted the local nuro ward, on the 27 of feb they rang and booked me in for a few days. I then had a angiagram and they found a large ish avm.
I was beside myself for the next 24 hours wondering if i was doomed or if they could help and operate. Then a vain specialist came to see me. ( over the 3 days i was in i lost count of the different doctors i had seen). Anyway he gave me 3 options and advised to start with the Gama knif then if thats no good the gluing of blood vessels then if that doesn’t work to operate.
He told me to carry on with my life as normal (just calm down in the gym, i love the gym but i have now stopped) if i had a seizure then to stop driving, and Sheffield hospital will be in touch soon to arrange the Gama knife.
i came home a week last Friday, i had missed my family so much. But all week i have been worried about having a fit or funny doo, i feel good within myself and went to work all week, my only problem is my peripheral vision and my massive worry of having a seizure.
Has anyone else got eyesight problems, can anyone please put me at ease… i am a bit of a worrier.
Your not the only one with eyesight problems. My AVM was a long time ago back in 2000 when I was 10 and it damaged my right peripheral vision in both my eyes and eye sight in my right eye. I was afraid I wasn’t going to bee able to drive further in my life but I ended up getting my drivers license and I’m driving to this day. My vision is good and bad its funny how it works The AVM was on the left side of my brain and when it ruptured damaged the right side of my body vision whys 20/20 left eye right eye usually have a contact in it. As far as it goes with me having seizures its been over 5 years since my last one and that wasn’t because I forgot to take my Meds. Cot viral meningitis. Fever got to high and blacked out. Docks were nice and said just go a week with out driving you just had some bad luck.
Best advice is to carry on, I agree. Really difficult to do but keep a little busy, keep you mind active with work, home, projects, whatever.
Other advice I had was to cut out smoking, caffeine, alcohol, chocolate, etc – i.e. stimulants – and keep your blood pressure kinda low.
My AVM is in my right occipital which is where sight is “processed”. I’ve got a tiny bit of odd vision but may not be AVM-related. Based on what you’ve said, it sounds like yours might be in your occipital lobe, though to have effects visible to an optician suggests much further forwards. Peripheral vision is sometimes impacted by AVMs, or indeed surgery in the occipital lobes.
Sheffield is a major centre for gamma knife, so you’re in first class hands.
Hi Matty as a follow UK person I understand your issues, 1 thing to note is that after some of these procedures you cannot drive also, So check that out further if you wish, Here is a little flyer that I found while researching initially AVM NHS Flyer If your doctors thought you were at risk of having a seizure they would have prescribed you anti seizure meds even if that was just for precaution, But my advice to you would be to just relax and take it easy AVM’s are blood pressure related and if you keep your blood pressure low via relaxing etc… then you’ll be just fine , Make a list of things to ask the doc on your next appointment and make sure your list is not full of random things that your worried about, Make them relevant to you/your job or family etc , You’ll be just fine the Sheffield radiology department are the best in the UK so your in good hands and they are doing this multiple times per day everyday, Take care
My right eye will never be as good as my left. Still have a vision test once a year just to make sure everything still the same. It’s sort of funny having just one contact for my right eye. But they say that nothing really should change. Medication whys I’ve been taking Keppra 1500 mg and Trieliptal 750 mg both morning and night since the beginning of all this.
A take Keppra and Trieliptal to prevent seizures. Went 10 years without having one but 2012 had one reason why was difference between brand name and generic brand. Back on brand name now. They figured that since I take more than one type of pill and they kept switching generic brands that’s what caused it.
Marty, my AVM is on the right frontal lobe, and I feel like I have lost a lens to my eye, so I went to the eye Dr. He said no it is not your AVM, still waiting to talk to dr.s. kinda frustrating, best of luck to you Marty.
It is indeed worrisome when you lose your vision. I had vision problems after my bleed (optic nerve at centre of brain) that lasted some months. Mine gradually got better and improved to even better after my radiation treatment. The avm was on my optic nerve and as it shrank my vision improved from 20/60 before bleed to 20/15 after treatment.
Hi Matty,
After my brain bleed in 2006 (I was ten), I had double vision whenever I looked down. The doctors didn’t even know, and my mom figured it out when I was trying to write on a piece of paper and ended up writing on the table instead. We were then told that I would eventually need surgery to correct it, however, as chance would have it, it actually cleared up on its own about six months later. I have been wearing glasses for the past few years, but I believe my eyesight problems now are just genetic.
Wishing you all the best!
-Julia
I have a cataract and it has gone terrible in my right eye it’s on the same side as my AVM in the right frontal with a bleed, i’m getting my eye fixed first and then my head probably at the beginning of June I’m scared to death but this is making me sick to my stomach not been over to see right .
Matty, found out about my AVM 20 to 25 years ago he didn’t know much about them but now it has started to bleed it is in the right frontal part of my brain and I to have a good nine brain tumor in the center of my brain I just am so irritated that I cannot see so Tuesday they are supposed to at least fix my eye and then hopefully it goes smooth with getting my head done thank you so much for your kind words, blessings to you as well.
I should say I am now 54 and I know it’s harder the older you get they didn’t seem to want to do anything anytime soon until it started bleeding now I have really bad eyesight really bad ringing in my ears and really bad headaches
, Make a list of things to ask the doc on your next appointment and make sure your list is not full of random things that your worried about, Make them relevant to you/your job or family etc , You’ll be just fine the Sheffield radiology department are the best in the UK so your in good hands and they are doing this multiple times per day everyday, Take care