Hi All
I am Matty, found out about my AVM in january 2017. Found this site last week which i am grate full for.
Its nice to know i am not alone. i mean that in a nice way. sorry.
I am 45 years old and very scared. oh and i live in the uk.
Matty
3 Likes
Hi Matty. I read your post about eye sight as well, sounds like the right things are happening albeit always slower than we would like. I was 48 when I found out I had an AVM last May when it bleed. I had gamma knife November 10th. I get what you say about not being alone, lots of experiences here, all unfortunate circumstances but its our new reality. Great group of folks on here. Take Care, John.
Hi, Matty,
Welcome to the site! It’s great to have you with us, though better to have no need to do so.
I know kind of what you mean. I’m 50 and in the UK. I think I went through my main “discovery” journey in September and October last year, so not very far ahead of you. It’s quite a rollercoaster. Tell us a bit about your AVM. What you know so far, what you’re wondering about, and we’ll try to help.
Until the doctors tell you otherwise, don’t worry about it. AVMs come in all shapes & sizes, some needing scary treatment, others needing less scary treatment and some best left on their own.
Very best wishes
Richard
Hello Matty, thank you for joining us and welcome, happy to have you here, just reach out and ask questions, you will be surprised!! There are some awesome people on this site and we all stick together, no matter what, never give up, be strong and carry on
This site has good information. Just remember there are not any stupid questions; so ask and somebody on here probably had similar issues that they can discuss.
Hi John, thanks for your reply . how were you after the bleed, and how are you now after the knife.
I had a tough go after my bleed, a lot of pain and swelling, short term memory was just about non-existent, aphasia, incredible sensitivity to light, attention span was really short(shorter than usual!), had symptoms similar to meningitis in respect to stiffness in the neck and back, and incredibly fatigued. I recovered over a period of months with limited lasting effects, so really lucky. After the gamma knife I had some soreness due to the bolting of the “halo” and numbness to the head. I’ve also had some minor head aches and odd feeling potentially due to some swelling of the site I’m told. Overall limited effects from the gamma, however still possible some more might show up. Craniotomy was an option for me however based on the surgeon’s recommendation gamma presented significantly less risk of side effects, mine is fairly deep so high chance of lasting effects. Of course I live with the risk of a re-bleed in the meantime, which I would not want to go through again. Hope this helps, of course all are different but more than willing to pass along my experience if you have any other questions.
Hi Richard
Ha i like how you say scary… its all scary. Thanks for replying to my post. some nice advice.
i had a MRI then about 2 weeks ago an angiogram they at first said they would do some gluing with the angiogram, but then the day before just decided to do an angiogram only.
The angiogram was not to bad, well to be honest i was shitting myself, i am very soft to be honist. It all went ok and at the end i asked the doctor for a look at my AVM. He told me it was large ish and its on the left side of my hed behind my ear.
Well when i got back on the ward i just started crying, it was visiting time and i had know where to hide. I just felt sorry for myself and cried. (soft lad that i am) I had it in my head that they could not help me.
Well, the next day i was introduced to a vein specialist who explained the best plan of what to do. He explained to start off with the easiest to the hardest. so Knife, Glue, then if that doesn’t work operate.
But he did mention a few times if i have a seizure to hand my car keys in, he mentioned it a few times and its another thing that is scaring me, the seizure i mean.
Have i said angiogram enough. lol
What about yours Richard, do you have bad eyesight… or have you something else, what about the knife has that fixed you. what was it like.
Matt
I wanted to post a heart for that comment, but thought no an electrition wants words. Thanks nice words. Sparky.
Matty
Hi John
Thanks for that, wow the bleed sounded bad but good to hear you recovered from it. So the knife has it blocked off several veins so as to stop blood flow to the head being less than blood leaving the head. That’s our problem right. To much blood going into the head and not coming out fast enough.
will they carry on monitoring you, every month 6 months or more? will you have more treatment?
matty
cheers
I go back at the one year mark for an MRI and hopefully 6 to 8 months after than an angio. That is if all goes very well. they hope mine may be obliterated by then, all will be based on the MRI in respect to planning the angio. I’ve had two angios now, so another one at least. I actually have the CD of angio of mine and its a snarl of veins straight to an artery, the high pressure vessel to low pressure vessel with no capillary bed in between. The low pressure vessel is what bursts. I guess in essence the vessels brining blood in out match those taking it out. I get you on scary, I had quite a few good cries. Pretty sure it made me stronger and more determined, I think its a perfectly normal reaction to something like this.
Hi sorry
how long from the discovery of your AVM to having the knife.
Matty
6 months. Reduced staff in the summer and underwent another angio and MRI determining if it was going to be gamma or craniotomy.
Thanks. Cd of the angio, i am getting one of those.
you seem clued up on this. i suppose you all are.
Matty
so. 6 months, wow i was expecting a letter in a month then about 3 weeks and in. ok i suppose NHS is under pressure.
So the knife is right for you, no mention of gluing.
In those 6 months i bet you were beside yourself.
It was a long time, but am confident the right decision was made, so worth the wait. Absence of a bleed in the meantime, completely the thing for me.
No talk of gluing aside form very early being one type of treatment. My original surgeon was the embolization guy as well, didn’t think it was necessary for mine
Thanks john
Matty, welcome here. I am an AVM surguries 1990 survivor, and I always say this is now my ‘2nd Life’!
What are the issues that you have w/your AVM, and how old are you?
Lisa