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AVM Survivors Network

Recovering from AVM Rupture


#1

Hello, my name is Ofelia and I am writing from Seattle WA. On August 16th I suffered a severe stroke as a result of an AVM. I had never even heard of AVM before and had no symptoms before the stroke. After an initial diagnosis, the neurosurgeon performed an embolism and then a full resection I then spent 2 weeks in ICU and a total of one and a half months in the hospital recovering. I was still in a wheel chair when I arrived home, but have slowly graduated to a walker and then cane. I do require 24 hour supervision.

While the neurosurgeon was able to completely remove the AVM, I am still suffering from many symptoms and have a long road ahead of me. I am weak on my right side but have reduced sensation on my left side. I still have problems with blurry vision when I am tired.

My biggest issue is that I do not hear out of my right ear and I am suffering from severe tinnitus (whoosh whoosh sounds like a TV that doesn’t have a channel). Is anyone else suffering from these symptoms?

Ofelia


#2

Hey Ofelia,
I have needed to have a few neurosurgical procedures including a craniotomy. I have two shunts (basically a drain) in my skull, one is functioning the other is fractured and does not drain. After the first surgery I recovered quite well, I had friends come and visit me in hospital and this lady cracked a joke about the row of staples looking like a zipper in my skull. I cracked up laughing and heard this sound like someone blowing through a straw into a milkshake. It shocked the hell out of me, but nobody else could hear it. So it had to be in my head (no pun intended). I spoke to the surgeon about it the following day and he told me it was probably the CSF being forced out through the burr holes as I exerted myself laughing. He advised me that as the skull heals those holes would close and the fluid would not be forced out.

After the 2nd operation the recovery was not so good. As part of my recovery I used to take my wife’s dogs for a walk and whilst walking I’d get this ‘whoosh whoosh’ sound in both ears. It had an awful effect on my balance, some people thought I was drunk. Our hearing plays a large part in our balance and only small changes within our ears can have huge repercussions. But for me eventually these all settled.

My eyes have always had issues, but the opticians I had seen over the years as a child thought I was making my visual issues up, so they were ignored for many years. My headaches seem to radiate out through my eyes. I explain it as ‘someone shooting a bolt from the back of my skull out through my eyeballs’ and as for intensity, absolutely off the scale. I’ve recently seen an ophthalmologist and in real basic terms, he said “It’s all connected”.

Since my last operations in 2013 things have ranged from bad to very bad. My eye pain is daily, my headaches are constant and as for my balance it fluctuates something terrible. I can stand from sitting and find myself on the floor. I can stand, brace myself, normalise my balance (with a bit of a wobble) and be OK or fall over backwards. I can never tell. I have spoken to the dr’s about all of this and the response I get is “…ohh don’t worry, it’s all in your head…” as if I didn’t know that already. But none of them have any great answers.

So, I’m sorry to say, I don’t have any real answers but I can assure you, you are not the only one to have such issues. All I can say is that I have learnt to manage the best way I can. Some days that’s easy, some days I’m lucky to be able to crawl out of bed. I can never tell.

Merl from the Moderator Support Team


#3

you’re not alone; I have similar symptoms.
just keep fighting and some of your symptoms will improve over time.


#4

Thank you everybody. Like everyone else, the hardest part for me is having doctors say sorry there is nothing we can do. But I am working hard and fighting everyday. I have appointments with more speciliasts next month about the sound in my head and hopefully they can help in some way.

Ofelia


#5

Miss O,

I’ve been fighting my AVM for 40 years - for the last 6 years, I’ve had that noise somewhat quietly that it was annoying but not really irritating. After my Jan. 2018 embolization, the noise in my right ear is still the pulsatile/throbbing but is probably 5 times as loud. The left ear is non-stop jet engine whine. So, yeah, I’ve got it too.

So far, the docs are telling me that fighting the headaches and that is probably the best thing they can do for the noise - and I’ve got about 40% hearing on the left side, 70% on the right side.

That’s the power of this group - we are not alone.

TJ


#6

Hi Ofelia, I’m so sorry you got slammed with all of this the way you did. As far as the pain, uncertainty and symptoms, hopefully they will decrease gradually.
Please do take care of yourself emotionally. That means different things to different people, so find your own sweet spot or sacred space. If you need a therapist don’t think twice (it’s alright.)
I’m 59 so when I went through my AVM rupture and surgeries at age 14, it was a different world. There was actually a shameful stigma attached to seeing a therapist. (You had to be “nuts” to go to those guys.)
It’s completely different now, thank gd. I like to think of it as an investment in a healthy future. I know how rough this can be right now for you. You’re not alone, Greg


#7

Hi there,

I suffered a stroke from an AVM in August of 2013 and also live in Seattle. If you want any support or just someone local to visit with or talk to, I could be there for you. The recovery is a process and I found it to be helpful to have people to talk to, support groups are great but having someone who knows what you are going through that you can text or call in moments of stress or anxiety is helpful. Please message me directly if you want to talk or meet up.


#8

Hey O,
I have been left with similar conditions. Right sided paralysis, limiting vision, memory issues. But extreme tinnitus is the worst for comfort. 24/7 and the only changes ever are volume/pitch. And Botox was the only relief in decades, then my insurance changed my policy because of the expense.


#9

Hey there Ofelia. I read your post and wondered, could that be tinitus? I say this because my family has dealt with that recently. Specifically, "Ringing or buzzing noise in one or both ears that may be constant or come and go, often associated with hearing loss.
Common causes of this symptom

Ringing in ears can have causes that aren’t due to underlying disease. Examples include exposure to loud sounds, whiplash, head injuries, too much ear wax, or medication side effects." Google.

And from Mayo clinic, https://www.mayoclinic.org/diseases-conditions/tinnitus/symptoms-causes/syc-20350156

Hope all is well. Grace and peace!