avms

lila44

arterioveinous malformations, does anyone here have them? curious....

lila44

my PI is that I suffer from them, and was hoping to find someone to share experiences with etc...

lila44

20 views and no replies.......

guess I'm the only one!!! Makes me special..in a way..

olgis

Hi Lila!really unusual that I came across this thread as they are so rare,I have a brain avm that unfortunately ruptured this year but fortunately I have recovered well!:)

lila44

olgis wrote: »

Hi Lila!really unusual that I came across this thread as they are so rare,I have a brain avm that unfortunately ruptured this year but fortunately I have recovered well!:)

Yay! A reply!

Oh, I am so glad that you recovered well. It must have been really hard for you.

I have several AVM's, located in all along my left leg. Nothing compared to a brain one! It's quite frustrating, as my doctor recently told me that there's pretty much nothing he can do for me.

Do you suffer from much pain? How does it affect your life? I have pain, currently on ponstan, have been for several years now. Quite bad that I have to take painkillers every day!

Hope we can maybe share some experiences!

olgis

Hi thanks a mils:)sorry to hear about the pain, during recovery was getting severe headaches but after easing a lot,most of the problems were caused by the bleed..
yeah they're nasty things to try to treat, I'm after getting embolization to try to make it shrink, could it be an option for you?I'm on a avm forum at the moment that I find really good, it has an extremities group too
http://www.avmsurvivors.org/group/extremityavms

lila44

embolization is not an option to me i'm afraid..the avms are so intricate and tangled up that it would be very hard to do, and also, I don't like the risk of afterwards it could grow back anywhere in the body!

jessiejam

Hi there

My OH has one in his spine. Inoperable. Just found it while getting a routine MRI for unrelated back pain. Thank god for an excellent neurosurgeon!

He also suffers with siatica so everytime he suffers with that we think that its the AVM rupturing.

He is aware of the signs of leakage or rupture, but TBH I think he would rather not have known about it.

Its just as well we got our life insurance before this discovery or we would be paying out a lot more than we already are!

lila44

are you serious? You have one in your brain and you're other half has one is his spine? Jesus...! It's lucky that you have each other!

From doing research, I guess I have it lucky. I think there's very little risk of mine bleeding or anything due to the location. My only problems are pain and a slight limp! Also some flexibility and posture problems!

Do you know how many people in Ireland suffer from AVMS? I have tried to find out, but google doesn't know :P

There really should be more research done on it. It's ridiculous how little is known about the condition!

rayjen2k

Hi guys I just came across this post.
I have AVM in my lower jaw/throat area.
It doesn't cause me much discomfort only the odd time when I'm lying flat.
I have decided to grow a beard to hide it a bit as it has made my left lower jaw look a lot fatter than the opposite side.
Docs don't seem to want to do anything as it is to complicated to operate on...
Is there many in Ireland with this?

emzolita

my little sis has one,(on her scalp and in the tissue in her neck) she had coils when she was 5, then when she was 15-17 she had 53 ebolizations and it kept growing in different formations, they needed to take it out but said they wouldnt operate cause it was all Arteries not veins, so she would not make it through the operation.
It kept growing, and she had 3 major ruptures, 2 of which she was on life support etc. was an awful 2 years.
eventually a doc in liverpool said he'd operate on it, she had no other choice, so he successfully removed it, although, she had to get skin grafts on her head to cover the scalp. She was in hospital for 2 and half years altogether.

Not enough is known about these awful things, as she continuously told her doc it was growing, and he refused to believe it was until it split her scalp open.

Most cases aren't as bad as this though, she was unusual and was in loads of doctors papers etc haha.

rayjen2k

emzolita wrote: »

my little sis has one,(on her scalp and in the tissue in her neck) she had coils when she was 5, then when she was 15-17 she had 53 ebolizations and it kept growing in different formations, they needed to take it out but said they wouldnt operate cause it was all Arteries not veins, so she would not make it through the operation.
It kept growing, and she had 3 major ruptures, 2 of which she was on life support etc. was an awful 2 years.
eventually a doc in liverpool said he'd operate on it, she had no other choice, so he successfully removed it, although, she had to get skin grafts on her head to cover the scalp. She was in hospital for 2 and half years altogether.

Not enough is known about these awful things, as she continuously told her doc it was growing, and he refused to believe it was until it split her scalp open.

Most cases aren't as bad as this though, she was unusual and was in loads of doctors papers etc haha.

Yikes, sounds like she had a terrible time of it.
I've been very lucky in comparison, just a few bleeds mostly from when I would be nick it with a razor and once when a piece of timber poked me in the neck at work.
They always stopped after a few minutes of holding a cloth up to them.
I don't have much interest in going to anymore checkups in Ireland as I don't personnally believe they know a lot about AVM here, and every time I go in I get referred to a different doctor and I have to start from scratch explaining it to him

lila44

rayjen2k wrote: »

emzolita wrote: »

my little sis has one,(on her scalp and in the tissue in her neck) she had coils when she was 5, then when she was 15-17 she had 53 ebolizations and it kept growing in different formations, they needed to take it out but said they wouldnt operate cause it was all Arteries not veins, so she would not make it through the operation.
It kept growing, and she had 3 major ruptures, 2 of which she was on life support etc. was an awful 2 years.
eventually a doc in liverpool said he'd operate on it, she had no other choice, so he successfully removed it, although, she had to get skin grafts on her head to cover the scalp. She was in hospital for 2 and half years altogether.

Not enough is known about these awful things, as she continuously told her doc it was growing, and he refused to believe it was until it split her scalp open.

Most cases aren't as bad as this though, she was unusual and was in loads of doctors papers etc haha.

Yikes, sounds like she had a terrible time of it.
I've been very lucky in comparison, just a few bleeds mostly from when I would be nick it with a razor and once when a piece of timber poked me in the neck at work.
They always stopped after a few minutes of holding a cloth up to them.
I don't have much interest in going to anymore checkups in Ireland as I don't personnally believe they know a lot about AVM here, and every time I go in I get referred to a different doctor and I have to start from scratch explaining it to him

I know exactly what u mean, no one knows anything and it's the most frustrating thing in the world.

I hope the travel to America some day (when I can afford super good health insurance lol) to get a second opinion, as the last doc I saw here said 'learn to suffer with it, not suffer from it'!

Does yours cause u pain?

rayjen2k

Sorry, I totally forgot about this post.
I felt like the Irish "specialist" was about as interested in taking my case any further as I am of jumping off a cliff

Until lately I have been very lucky but in the last two months it feels uncomfortable most days.

It seems to get more uncomfortable when I lie down in bed, it's got to the stage that I use three or four pillows to keep my head at a better height.

So, I'm not sure what my next step will be.

lila44

rayjen2k wrote: »

Sorry, I totally forgot about this post.
I felt like the Irish "specialist" was about as interested in taking my case any further as I am of jumping off a cliff

Until lately I have been very lucky but in the last two months it feels uncomfortable most days.

It seems to get more uncomfortable when I lie down in bed, it's got to the stage that I use three or four pillows to keep my head at a better height.

So, I'm not sure what my next step will be.

Do you take pain meds?

rayjen2k

No I don't bother.
It's not so excruciatingly painfully that it stops me working.
It's just a continuos niggle that you can notice and you kinda get used to it.
I'm living and working in London now.
I am going to get registered with the NHS over here just in case something were to happen.
It's probably a better country if I were to look into getting something done with it.

rayjen2k

So. It's a long shot. But I thought I'd check back in to this and see how things have changed for all involved.
About the last time I wrote on this I moved to London looking for work.
I'm still over here working away.
I still have pain/throbbing sensations in my neck and jaw when I lie down.
Have things changed for you guys?

lila44

lol I just randomly had a thought to check in on this thread haha! hard to believe I started it 7 years ago.. nuts all together.


Very little has changed for me anyways, I think since I last posted I've been to see a consultant in Dublin once. He told me to wear compression tights, which do help a little with the "uncomfortableness" as such, not really the pain. Still on the pain meds!! They just don't wanna know though. And having to explain my case every single time I see someone is such a pain. What's the point in seeing a doctor when I'm the one explaining to them?

I've also had orthotics made for my shoes to help with my weird posture and gait troubles caused by the avms. My orthopaedic guy also gave me a knee brace to wear from time to time, like if i'm going to be walking a lot etc. He said that my knee is very slightly "kicking out" and that could get worse over time. Seeing him kind of sparked something in me tbh, I'm almost 30 years old, I can't just do nothing about my condition, but I happen to live in the ****test country to have a rare illness lol! Rock....hard place....

I do try to work out as often as I can, couple times a week I go running too. I'm awful at it, and it does cause my leg additional pain, but I figure anything to help build the muscles up even a little needs to be good right?

Anyways, I hope all you guys are doing well too