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AVM Survivors Network

Something good came of it

Hi all,

I have read some frightening and sad stories here. Also some success stories. I have had some scares myself with my brain AVM which has caused no end of problems in the last 5 years.

It was discovered in 2014 and operated on with “Gamma Knife” at Sheffield Hallum.

In 2016 it was still there - the size of a golfball. When it “awoke”, which was whenever it felt like it, I had scary awake seizures where all my muscles on the left side of my body cramped. It was agony every time it happened.

In 2017 I lost power in my ankle and thought nothing of it - but it became a mini-stroke which left me paralysed on my left side. I went to hospital again, this time for 3 weeks and, after another 2 attacks I finally got some use of my left side back. The Gamma Knife operation had caused scarring - this was now causing the problems. Meds were added and made me feel bad. I stuck with it though and came through the depression. Neurological meds are weird things.

A few weeks ago I had a check-up after another MRI. My AVM is now gone - no blood is flowing through it anymore. The scar tissue persists however - they don’t really know if that will cause a problem or not. So I stay on the meds - they make me feel tired all the time.

Anyway - overall I am a lot better now. I have not had a seizure now for 18 months (although I NEVER take it for granted that I will not have any more of them).

I don’t like it when people say “oh, you are so brave!” - I wasn’t brave at all - it just had to be done.

This condition has changed my life - but - in a good way. It woke me up to how lucky I am to live in a country with healthcare. Lucky and grateful to all those people who invented the surgery techniques and the great staff who studied for years to help me. It has been life-changing, in a good way. I am less arrogant, less judgemental and much more grateful for each day (literally each day I say “thanks” to fate).

I am so sad for the people going through frightening times with these AVM complications. There are some stories which go well and others which do not end so nicely. I feel for you. What can I write that will help? I don’t really know. I don’t want to sound like someone who has “made it” and is gloating - I just wanted to say how it went for me and how, in a back-to-front and upside down way it has helped make me a bit of a better person. It made me realise that planning too far ahead is not for me. I go to work but it is not as important as it was before. Stopping to talk or just having a look around you instead of always thinking ahead or making my boss happy.

I hope all of you who have this, and your loved-ones who have AVMs will be healed and get better.

Chris

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I also have scarring after my AVM ruptured so they plan on keeping me on Keppra probably for the rest of my life but I’d like to wean off of it at some point because it makes me tired and the first 6 months it made me moody and irritable but my body got used to it after awhile and now I just get tired about 30 minutes after I take it so I generally need a short nap every day to get through it stay strong; sounds like you’re doing well!

Thanks Chris, great perspective and I love the matter of fact message. It does sound like you’re doing well and great to hear. These things are so diverse and present such a wide range of symptoms and challenges in so many ways the voice of experience is so valuable when others like us show up scared and trying to figure out which way is up! Take Care, John.

I lost use of my left side in 2015. I had the Gamma knife in February 2014. They initially said I had a stroke which caused the left side paralysis but just recently found out it was from scarring. What medications did they put you on for the left side paralysis? I’m only on a low dose muscle relaxer which doesn’t really do anything. Good luck in your recovery.

Hi kcj,

Sorry to hear that. What is your status now? Is your paralysis permanent? Mine was thankfully temporary but it has taken about 18 months to get back about 90% of what I had. Dexterity has gone.

When the stroke occurred I don’t think the avm had gone completely. Scarring had cause a swelling and inflammation - this shut blood vessels off.

They gave me steroids at first and kept doing MRIs every few days with contrast. The swelling eventually subsided but not before another couple of seizures and more paralysis.

I was on lamotrigine 300 mg a day. I was told this drug does not handle sudden attacks well so they added phenytoin 300 mg and clobazam 10 mg per day. I had lorazapam for when I started to panic which was often. Boy I love that stuff! Dangerous though for addiction.

I am now still on this cocktail minus the lorazapam of course.

I have to have blood tests every year to check things are still ok.

What happened to you? How do you feel about things?

Chris,

Great thoughts. I agree with all of the bits I’ve quoted above. I’m not brave. I’m not sure I have had to be, though I’ve not been through as much as a lot of people here, or you.

What can you do? What I do is try to reflect on a person’s position: do I understand the worry that they have? Have I had similar worries? Have I any experience to share that could say “I felt like that, too, and it came out alright for me” or have I read other people’s stories on here, where I can honestly say I’ve read something that might encourage someone else, even if it was not my direct experience. I think it works. What this community is about is that sharing of experience, understanding and the ability to say something encouraging, however small, as long as it is honest experience of some kind.

Another example I can think of is Michael J Fox. He wrote an autobiography called Lucky Man. One of the main story stands, if not the story is his diagnosis of Parkinson’s Disease. Why on earth would anyone reflect on a Parkinson’s diagnosis and count themselves lucky? I can’t remember the particular reason given by MJF but I think it was exactly along the lines that you are reflecting: the medical diagnosis has given him and you pause to reflect on the things you have, the things you had, and to say “hey, I’ve learnt stuff from this. I’m a nicer person and I am still very lucky to live at a time when treatment for this stuff is better than it has ever been”. Something like that. Find the book and have a read. I enjoyed it.

Hope this helps and keep up the great work of sharing with others.

Very best wishes,

Richard

Thanks Richard,

I think my brother might have that book. I’ll check it out!

Chris

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