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Hello there!


#1

Hi there, I just wanted to introduce myself after recently signing up to the site. I haven’t really contributed much to forums in the past, but I thought I’d give this a go as there appears to be quite an active, supportive community from what I have read.

My name is Stephen and I live in Manchester, England. I’m 29 (although I turn 30 later this month), and I wanted to share my AVM story.

Last year in July 2017, I experienced a severe headache which I thought was migraine. I’d never experienced a migraine before but had heard that they were pretty bad, so I just assumed it was that. No serious medical history prior to this, no idea of any AVM or the like. For a few days afterwards my eyes were very sensitive to light, so I went to the eye clinic to get this checked out. They also thought this was ocular migraine and advised me to come back a week later. In this time I felt fine, a little tired, but I was still attending work etc.

A week later I returned to the eye clinic and they performed a visual field test which showed that I’d lost my peripheral vision in my upper left quadrants of both eyes. I hadn’t actual noticed any vision loss thankfully, and while my peripheral vision will not recover, I am lucky that my core vision remains intact. After finding that my peripheral vision was gone I was transferred to A&E for more tests, as this indicated some kind of lesion in my occipital lobe. MRI scan revealed quite a large bleed and I was transferred to Salford Hospital (the main centre for Neurosurgery in the North of England) for observation. Initial tests did not diagnose my AVM, as the bleed obscured the imagery. I still felt fine at this point, and was kept in hospital for 5 days. Various outpatient appointments followed and I had an angiogram in November 2017. I was then told that they had found what they thought was an AVF (they didn’t have all the information at this point because I was awake for the angiogram). My consultant suggested that I proceed with endovascular embolization of the AVF and this was scheduled to take place in April 2018.

On the day of the operation, I was admitted to surgery, and put under general anesthetic. I was awoken from the surgery to be told that they aborted the surgery because the felt it would be too risky to proceed. They actually found an AVM and they felt that injecting the glue had a higher likelihood to cause sight loss than they originally thought. My understanding is that I can still have the embolization procedure, but originally I consented to it when the risk of any adverse event would be much lower than they thought.

I am due to return for a follow up appointment this Friday to discuss my options and see if gamma knife surgery is an option.

On the whole I have been dealing with what happened pretty well, but since I was told that the procedure was aborted, and there is a much higher risk of losing my sight, I have started to have quite bad panic attacks. My GP has started me on propranolol to help (which it does), but I also worry about having a second bleed as I have been told that the chance of this is higher in the first year of the original rupture. I know I am lucky - despite the slight loss of vision which I don’t really notice, I haven’t really had to change my life after the AVM. I know things could have been much worse, but I still feel very anxious about what will come next. I think my surgeon was very surprised that she had to abort the procedure, as she hadn’t told me that this was a possible outcome. I went into theatre that day thinking that my AVM would be resolved but found up to find that there were in fact more difficult decisions to be made.

I am terrified at the thought of losing my sight. I wouldn’t be able to do my current job and two of my other passions are reading and playing video games which would of course be impacted if I lost my sight. I have a wonderful boyfriend who has been so supportive throughout this whole thing, but if I did lose my sight I don’t know how he would cope with that, and I don’t think it would be fair on him to have to deal with that. It feels like a bit of an impossible choice: either let nature run its course and live with the anxiety of knowing the AVM could rupture any day, or elect to have the surgery and possibly lose my sight as a result. It feels a bit overwhelming at present.

If anyone has any tips on dealing with the anxiety or thoughts on my options, please do share. I hope this is okay as my first post and I look forward to hopefully chatting with some of you.


#2

Welcome to the site! a lot of good people on here and similar stories to yours that might help you get through some of this.
When my AVM ruptured (I didn’t know I had an AVM before it ruptured) I lost peripheral vision in both eyes to the left and down; when I had the surgery to remove AVM there was a chance that I could lose complete vision and yes I was scared that I might go blind but I also knew I had to deal with the AVM in my head as another rupture probably wouldn’t have ended well for me; so unfortunately there are no easy answers… it’s get all the information you can and weigh out the risk and reward and make the best decision for you.
As for the anxiety that can be tough until the AVM has been removed or obliterated as you’ll always have that worry in the back of your mind, you just have to realize that you had it in your head for 30 years before you knew it so just take it day by day step by step.


#3

I am entirely sympathetic to your anxieties, Stevie.

The medical and physical pieces are so scary, but I think the hardest part is, after 29 or 30 years being forced to sit down and think, “I am not who I thought I was.” There is something in me that I didn’t know about, and now I do, and now I have to grapple with what that means.

I had an embolization on my left leg about two weeks ago, and my recovery is slow and stupid and painful and I am full to the brim with regret (even though I can tell that some good was done). I’m terrified that I will have to wear a compression stocking for the rest of my life, that my nerves won’t heal, that I won’t be able to hike or rock climb anymore, that sex will be painful and fraught, that My Life As I Know It Is Over.

(I’ve told my boyfriend that I hope the worst thing that comes out of this is that I am revealed as a huge drama queen.)

And it’s not, you know? It’s not over. But I’m having to see myself in a different light. I’m having to deal with the fact that I am not what I was 2 weeks ago-- that the things inside of me, known and unknown, will continue to make me wrestle with my view of myself, and how others view me as well.

I, too, am terrified-- that I won’t be able to stand or walk without being in terrible pain. But I’m also terrified that this mean that I am changed in ways that I did not opt in for.

So that’s all to say I’m sorry. And you’re still you, with sight or without.

(A side note-- there are some really cool video games for people without sight that are governed wholly through sound, narration, and movement-- but I don’t think you need to worry about that just yet.)


#4

Stevie,

Welcome! You’ve had quite a time of it but what the guys say is absolutely right.

I know @corrine has been through a similar experience to you – not the same – and is a similar age. Corrine, do share a bit of your story.

It is tough. I think especially so as a young person. I’ve no real idea how to let go of panic attacks. The medicine should help and I hope really gets you out of that hole. I do think it is absolutely normal to feel how you feel – life has suddenly thrown some big things at you and you should feel ok about not being in control of that. I think it takes time to come to terms with it; and then you can move on.

For my part, I have a dural AV fistula in my right occipital area and I got through an embolization fine. No long term impact on my sight, but I believe my AVM is much less invasive than yours.

It’s good to have you join us and ask all the questions you need.

Very best wishes

Richard


#5

Hi there Stevie,

As @DickD said, I can relate to your story on many levels!

Its nuts that we both got diagnosed around the same time too and we both love video games and reading (well redditing for me)! I was diagnosed in May 2017 at 23 yo, I have had migraines ever since my teens maybe earlier. My migraines became progressively more frequent around the last few years leading up to my diagnosis. A year before diagnosis my condition began to rapidly decline: I had daily migraines, visual episodes (where I would become temporarily blinded on my RHS visual field in both eyes) that were thought to be migraine related even when they came without a migraine, my energy levels plumited, I couldn’t concentrate on anything.

This all took a big hit on my studies, I was in my fourth year of my MEng chemical engineering degree and this took a big toll on my mental health. I reached a point where after a 5 day lasting migraine, a week before my exams I refused to sit them, no medical evidence on my side. Doctors kept ignoring my concerns putting it down to stress and finally told me I probably needed an updated glasses prescription - I thought this was stupid since my specs worked just fine but went to the opticians. They found that I had lost part of my lower right visual field in both eyes. I was then sent to opthalmologist who confirmed this and sent me off for an MRI which confirmed I had an AVM.

My diagnosis allowed my university to confirm that I could defer my degree as long as I wanted. I moved back home with my parents in London and was sent for a angiogram. I was told I had a 4cm relatively high flow AVM with no signs of brain damage and that embolisation was the best choice with very little risk other than temporary sight loss due to swelling. Like for your case, this was incorrect.

The day of my surgery on 26 Jan 18 I was informed what I had been told was a misreading. There had been 2 national meetings to discuss my case due to the incredibly rare agressive nature of my AVM. I had brain damage due to how high flow my AVM was where it sat deeply nestled in the vision centre of my left occipital lobe. The vessels surrounding my AVM looked close to collapsing and It was imperative I had a intensive embolisation to close off as much as possible in one sitting. This would put me at a 5-8% chance of a stroke causing total RHS vision cut, RHS paralysis and loss of ability to communicate. Craniotomy would 100% cause total RHS vision loss and GK was too slow and unlikely to be successful with high risk of a fatal rupture whilst waiting for it to work.

I went through with the embolsation since I didn’t really have much other choice. I had a 7.5hr surgery as opposed to maximum 3 hrs we were told it’d be. I had a stroke during my op and as a result lost the majority of my RHS vision in both eyes. Luckily I still have my central vision intact and a little upper right vision too. I was informed why though… they closed up 3cm but left 1cm left - which is located on the part that controls central vision which they didn’t touch. They sucessfully lowered the blood flow to the AVM giving time to decide what to do with the remaining AVM which is higher risk of treatment than my last op.

You can see my development in vision in this post link: My sight development (post embo occipital AVM)

With my sight as it is since I still have central vision I can read, go out independantly unaided (though I do bump into things/people sometimes). I am now terrible at finding things as a result and can’t drive which is a real bummer as an engineer but it is what it is.

Like you I live with the fear of losing my remaining vision and independance. I think what helped me alot is going to cognitive behavioural therapy which helped me cope better - I completed my sessions preop but what I learnt is still helpful now.

In terms of relationships, I’ve learnt alot. Unfortunately my boyfriend wasn’t very supportive and made me feel like a burden. I broke up with him a month before my op because the emotional stress got too much. I realised alot:

  1. I survived a stroke without him and despite thinking I couldn’t do it without him: well I did and proved to myself I’m stronger than I thought
  2. even if I do have new baggage , there is so much more to be than this AVM stuff, I am worthy of being loved and supported because I am a great partner too.

My point is, you are not a burden and never will be. Whether or not he sticks around if in the hypothetical future you lost your vision, you will be fine either way. From the sound of your post you are a caring and loving individual - if it was the other way around you would support him too. You are both lucky to have one another.

I am now certified partially sighted, as a result of the radiation during the op I have lost half of my hair (if you wanna see baldie pics My left occipital embolisation story), I have gained a fair bit of weight after spending nearly 2 years not moving around much and I might be blind in the future - but you know what? I have realised I am still more than worth it and so are you!

I recommend spreading out your support system if you havent already and keep coming to us too so you don’t just load it onto any one person. Also CBT or counselling so you have an hour week just for you to talk and be 100% open about your thoughts and feelings. Also honestly right now is the best excuse for guilt free TLC - try to fit in time to do things that make you feel good. TLC for me for example is getting my nails done at the salon, improving my diet to work on my figure, some retail “therapy”. I also have been loving watching the daredevil series on Netflix, seeing a blind superhero gives a more positive perspective - I am just now waiting for my own super powers to show :stuck_out_tongue:

Sorry about this all being so long! Welcome to PM me to chat or vent whenever :smiley:

Lots of Love,

Corrine


#6

Hi all,

Just wanted to thank you all for your replies, it has been helpful and inspiring to read through them. @Corrine - very interesting to read your story and your experiences. I will send you a PM soon to chat further if that is okay? Maybe tomorrow after my outpatient appointment! Thanks again all


#7

@stevie47 I would absolutely love to chat further with you :relieved: it is really comforting to have someone who is in a similar situation to me. Speak more soon x


#8

Just wanted to thank both of you for sharing your story. You are both so brave and should be very proud of yourselves.

Lulu x


#9

Hi Stephen I had an AVF in the occipital lobe area and can understand the concerns. I trusted my doctors recommendation for embolization and it has worked out so far. It was difficult going through the fact gathering process and weighing the options and implications. In the end I went with the recommendation from the experts and lots of prayers to get through it. Feel free to contact me for more details !