Quantcast

AVM Survivors Network

Embolisation Experiences Please / Sight Loss

Hi all :smiley:

I have searched through this forum but there is one thing I havent found - someone who like me, has lost part of their visual field (for me the lower right quarter) without any bleeds. I have been told by two consultants now that the safest way to treat my large AVM in my left occipital lobe is: embolisms to shrink followed by GK. Both said craniotomy will undoubtedly result in complete loss of right visual field.

I know the are risks associated with both embolisation and GK. Most people I have read about with occipital AVMs that have had negative outcomes from embolisation have lost part of their visual field peripherals. What scares me is that I dont have much peripheral vision left in my right visual field to lose…

I am worried that because I have had brain damage without intervention or bleed, that I could be more suseptable to further sight loss with intervention? But then again the consultants both said there is risk of further damage (field of view loss) if I dont seek treatment and since I’m 23 there is considerable risk of a bleed at some point in the future.

Is there anyone here that was like me: already lost part of their visual field due to AVM without stroke/bleed and how did treatment go for you? Could do with some other peoples storys to help me mentally prepare myself!

I am currently ding 3 embolizations and craniotomy. I don’t have loss of eyesight because mine is in a different area.

My son’s AVM is in the left parietal/occipital area. No rupture. He has had one embolization so far. He seems to have lost a bit of peripheral vision on the right. He describes it as “blurry” he also complains of everything being on a slant visually.

Hi Amy,

Thankyou for sharing your Son’s experience, I am wondering is this due to swelling (was this a recent embolism?) or has it been a fair amount of time?

Best wishes to you and your son,

Corrine

I have never had an embolisation but I did under go gamma knife treatment for my avm. My avm ruptured when I was 20, I lost all use of my right half of my body for about 6 months and it all eventually came back but after my gamma knife I lost 90% of my right arm, now im 23 and left handed. There’s nothing that can fix my damaged brain tissue now, the end.

Thank you Corrine,
Yes, I believe it was from swelling. As his steroids tapered off the pain and dizziness increased. He ended up with stronger/longer steroids. That and time has made a huge difference. His 1St embolization was 9/15/17, next one is this Friday. I wish I could take on his pain. This is the most challenging experience of my life. I try to stay positive. But it is difficult knowing the possibilities. Some days I just wish to fast forward to the completion of treatment. Thanks to this group for being there!
Amy

Hi Cody, been wanting to meet someone in the same age group on here, I am 23 too! You have gone through an awful lot in the past 3 years, thankyou for sharing your story with me. It is hard going from being a healthy young adult to finding out about this condition, health feels almost garunteed at this age until it isnt… Is there physiotherapy available to you to potentially gain back more % of use of your right arm? It must be a very difficult adaptation to make and its easy to say think positive but I know its not that easy. I have been going to cognitive behavioural therapy sessions and it has really helped me, I definently recommend it if its available. How long has it been since your GK? I always used to think before that if I studied hard and got good grades, my life would be made. Since I had to defer my final exams and move back home i’ve realised what a bubble I was living in. Trying to make the most of good days now when possible!

Big hugs, Corrine

1 Like

I hope the swelling goes down soon and sending all my positive thoughts and wishes for a swift recovery following his next embolisation. I am 23 and my family have all said the same things they feel helpless, it must be even more difficult with your son being so young. This will be a hard journey but once this process is done - focus on thinking about your son growing up to be healthy and happy and not having to worry about this AVM anymore. He will know when he faces future challenges that he could get through this AVM hurdle so he can get through anything. Thinking of how good it will feel once this treatment is all done is that gets me through, aswell as knowing I cant give up and break my family. As you know from my post it doesnt stop the fear of what is to come and the possible risks but I try to remember I am lucky to have the opportunity for treatments in the first place. I feel the same about wishing I could fast forward to treatment and recovery completion :frowning: but will all be worth it in the end.

Love and big hugs,

Corrine

Hi Kell thankyou for your reply, how many embolisations have you had so far? And how long has it taken to recover following each one? I wish you best of wishes for the treatments you have left to do, keep strong and take care :purple_heart:

Big hugs,

Corrine

Hi Corrine

I first found out about mine at Christmas, trivial pursuit with the kids… i couldn’t see to the end of the line of the question properly.

I went to spec savers and they told me to see my doctor as my right side top field of vision was not there.

It all snowballed from there really, i have a AVM back left about above my left ear. A a month ago ish i had the gamma knife, i just now need to wait and see “literally” what happens. I must say, not sure if its a coincidence but my headaches have slowed down a lot…

My specialist told me i may never get my full eyesight back, but I will be very happy if they solve the pressure in my head…

Matty

Thank you for the response, its been 2 years since the GK and I have not followed through physiotherapy, they took my license so im now unable to make it.

Hi @Cody_Thompson,

Please forgive me if these are annoying/unoriginal suggestions but would you be able to reach out to any family/friends to give you a ride? Or possibly notify the hospital about this and see if there are any services available to help with transport? I can’t imagine how frustrating it must be having your liscense taken - I hadn’t gotten round to getting one since I rely mostly on public transport so I guess it helps that I couldnt drive before this AVM stuff.

But even if you dont get more movement of your arm back, its important to try to focus on what you still have and what you can still do (I know easier said than done). I am still scared of what is to come and the risks but I try to focus on that if I lose my sight after all this treatment is done or some other health forfit: there are many routes to the same end point, admittedly some longer than others. As long as I am alive, I can still end up where I want to be - with a beautiful family, a life partner, genuine friends, a career that gives me a sense of achievement and happiness, experience of the world and the little things like waking up to scones with jam and clotted cream in the morning :relaxed:

If this AVM didnt happen to me… yes I’d have graduated and be working as an engineer right now most certainly a lot less broke but that doesn’t garuntee happiness. Before I used to judge myself purely on egotistic things - my looks, my major, my grades, what my peers in class thought of me. Now I’m in the process of loving myself with everything I used to cling behind stripped bare, appreciating loved ones way more than what I used to (even if they grind my gears time to time :roll_eyes:).

You got through an AVM rupture and lived, you have shared your story to a number of us on this site and given us strength and encouragement and when you look at it from the outside thats pretty admirable! Taking the time to share your story with me has meant a lot, sorry for all the blabber!

Corrine

1 Like

Hi there Matty,

Thankyou very much for your reply and sharing your experience! I weirdly didnt notice my sight loss and only found out after going to the opticians complaining about migraines :joy: I did get a habbit of making people walk/sit on my left side and now I am aware I realised people on my right side makes me feel uneasy due to blind spot so I guess I noticed the differance without registering!

I am glad your noticing less headaches now! I hope you continue to see further improvement with time :slight_smile:

Best wishes,

Corrine

1 Like

Corrine I have 3 embolizations and each one was different for healing. The first one wasn’t so bad then the other two took some time to heal.

Please don’t apologize I truly appreciate getting feed back from people going through similar situations, it helps. They have taken my license twice now and its just super frustrating, ive lost my job because of this as well. I just need to find a job that will hire a one handed person. Im sure everything will work out, some days are just harder than others. Thank you for sharing your story with me.

1 Like

You have every right to feel that way - I have down days too and im only 6 months in this avm journey… going from the brink of graduation to unemployement does a number on ones self-confidence. There will be certain jobs where this will be a considerable difficulty but there are still many options: education, research, most STEM fields are some that come to mind.

I have a friend of mine that went from working in construction management, realised he wasnt happy, took on an open uni online course in physics which landed him at my uni at 25 years old (which is top 10 in the UK for his subject) and now he is doing his PHD. Another guy in my course started at 28, I admired his guts to join a class filled with 18 year olds and now hes graduated, happily married with a great job. I met a man on the train to uni who was born blind - didnt stop him from being the first blind man at his university to graduate with a first class honors in computer science.

There are plenty of apprenticeships at the big corporates (at least from what I know in the UK) that make a point of being inclusive to minorities and people with diasabilities. The only thing that gets me out of my depressive points is reminding myself over and over: there is nothing saying you wont end up just as happy or even more happy than you would have been without this AVM - its just a longer and more challenging journey getting there but getting there will feel even sweeter.

Honestly its amazing to talk to someone who is going through these crazy changes and emotional rollercoaster :slight_smile:

Welcome to PM me whenever you want someone to talk to or just in general! :smile:

2 Likes

Hi @corrine i haven’t lost vision but my avm is also occipital left and i have migraines with aura. I always start seeing these flashes on the peripheral of my right eye until i can’t really see anything from that eye. It goes away after about 20 mins and then i’m left with the migraine. I’m not a Dr. But damage on the occipital left seems to have an impact on the right eye :

Hi Monica,

Thankyou lots for your response, I have exactly the same flashing light spells with and without migraine following, they vary in terms of how long they last. Yes the neurosurgeon said the damage to my left occipital lobe has caused loss of the lower right quartile visual field for both eyes.

I have read your post to “new members intros”. In terms of worrying about the meaning of these migraines when excersizing, I have noticed the same for me, I get migraines after jogging,carrying heavy shopping, stressing out. For me I have noticed they also can be triggered from not sleeping enough, dehydration and hunger.

In terms of excersize or stress I believe the build up of high blood pressure irritates my avm which is telling me off through migraines,auras or mental exhaustion or light headedness and its my bodies way of telling me to chill out. As for professional opinions: my neurosurgeon said the same as yours. He doesnt beleive my migraines are connected to the AVM, he said yes there is a possibility but hes not convinced they are definently linked. He did tell me to do no more than moderate excersize (no marathon races, heavy weights, sprinting - thankfully im a coach potato at heart). I find it important to listen to my body and not over do it :blush:

Its really lovely to hear you have safely had two babys with this AVM :relieved: do let me know how you get on. Angio on the 6th nov so looking forward to more information!

Best wishes,

Corrine

Hi Corrine, best of luck with your angio! :slight_smile:

1 Like

By the way, i hate to contradict doctors as i’m no expert at all, but doing a brief research online there are so many cases of avm patients that suffer from migraines with aura. Stress is what triggers them for me, i see it’s one of your triggers as well.

Best of luck :grinning:

1 Like