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AVM Survivors Network

New AVM diagnosis


#1

Hello there. I recently (Jan 4th, 2018) had a seizure while driving my car, lost conscientious, and crashed. Thankfully it was low speed and I had no major injuries. This was out of nowhere and I am in generally good overall health with no history of seizures or migraines or anything really. MRI revealed an AVM in my left occipital lobe. I have to have an angiogram next week to better understand the size and bloodflow, but the Neurosurgeon has already told me that surgery to remove it is the best option. Its good to see and read other peoples experiences and know I’m not alone. It was definitely an eye opener to sit in the office and hear them tell me I needed brain surgery.


#2

Welcome to our group. Great to hear the crash didn’t go as bad as it could have, another tough way to find out that you have a AVM! Sounds like you’re well in to the “what next” process and the angio should hopefully provide the rest of the answers. In my case the original thought was surgery but after a second angio and some consultations between neurosurgeons the recommendation went to gamma knife. Keep us in the loop and again welcome, John.


#3

Jn

Welcome to the site! I didn’t lose consciousness and have a crash but I do remember my conversation in the consultants room, telling me what I had and it is a bit of a shocker isn’t it?

I found this site about a month after that conversation and just like you had a good read round before joining.

Keep reading. The discovery process is quite shocking but it does all calm down, I think, as you get to know more about what might happen – and there are great survivor stories to help stave off the fear.

When you know a bit more about your options, do share them. Equally if you have any worries, just ask. This is what we are all here for!

Very best wishes

Richard


#4

KHi there,

I also have an avm in my left occipital lobe. Mine was treated in July with onyx glue. So far I’ve had clear angiograms and no need for surgery at this time.

I know a diagnosis like the one you just got can be overwhelming and scary but do know that we CAN and DO get better. Most importantly, no matter which route you go- it’s a marathon… not a sprint. The brain is a crazy organ and everyone is different.

You’ll find a new normal and look back at this time as a distant memory.

My blessings go out to you as you get on a path to recovery.

:heart:️:heart:️:heart:️
Rhonda
Avm survivor, 2017 :butterfly:


#5

Thanks for the welcome. After the angiogram and a few neurology appointments it looks like I’m having surgery at the beginning of March.


#6

That sounds good. Are you ok about it? Any questions or concerns do tell people… we are all here to help.

Best wishes,

Richard


#7

Hi JN:

Welcome to the group! We are an excellent source for support and encouragement. Like you, most of us had never heard of an AVM until the moment we’re told by a doctor that you have an AVM. A what? At that point every thing changes and that’s where we come in. This group has heard or read about AVM’s in just about every part of the body. Our individual stories may differ, but we’re all on the same journey to eradicate our AVM’s one way or another. Know that you have our support. You are definitely not alone in this fight. All you have to do is reach out to us. My AVM journey started in 2014, and I now offer you my prescription for dealing with the highs & low’s of this unique disease: P&P (Prayer & Patience). Wishing you the best of luck.

Sharon D…


#8

Nice to have the direction set! We’ll all be here for you leading up to the surgery and looking forward to your first message post surgery! Take Care, John


#9

Thanks everyone. My main worry is some kind of vision loss post op. The surgeon said its a small percentage and didn’t seem overly concerned about it. I didn’t experience and vision loss after seizure so I’m not sure what to expect. Oddly enough its not really the surgery that worries me. Its all the little things leading up and after the procedure.


#10

Hi,

Occipital lobe looks after vision, so I guess it is always a risk. Most of the people I’ve seen on here who’ve had some vision loss have lost some peripheral vision, rather than losing any central vision. My AVM was a dural arteriovenous fistula in my right occipital and my vision came through fine, if that helps. If the doc isn’t bothered about it, I’d take it as a positive sign.

I think you said you’re in for surgery rather than embolisation, so I can’t give you experience of that but there are lots of people here who have come through good.

Very best wishes

Richard


#11

Hi there @jn89,

I managed to completely miss your thread until now. I too have a left occipital AVM. I had lost some vision pre-embolisation and I can totally relate to the fear connected to potential sight loss.

I had an incredibly rare and aggressive case of AVM, the sight loss I was experiencing was infact brain damage. My neuro-radiologist described my case as a “1 in a million AVM case”. So please understand that my experience is probably most unlikely to happen to you. I had a very major and extensive embolisation procedure, one I have not read about anywhere online. I was already a extremely high major fatal bleed/stroke risk but during the procedure I suffered a stroke. It was monitored by my neuro-radiologist and luckily did not spread to the rest of my brain. My AVM was also sucessfuly reduced by 90% from 4cm to roughly 0.4cm. I was told a craniotomy would 100% cause total right vision loss among other potential deficits. I was told GK for my case would take to long at the level of risk I was and very unlikely be sucessful after one treatment.

Due to the stroke and partly swelling, I have vision loss. I lost almost all my right visual field in both eyes. However I have retained enough central right vision in both eyes to see full faces, read, have depth and motion perception. I am confident and the occupational therapist is confident with practice I will be able to safely go out independently without aid. The only thing is I will never be able to drive. I believe as the swelling has gone done some of my upper right vision has returned, but most is perminent due to brain damage from the stroke.

Now I am being absolutely honest. I truely feel the worrying about the potential of vision loss was worse than living with the vision loss itself. I think when you havent experienced something it is natural to make it seem like the worst thing possible in your head. The feeling of dread is awful.

I honestly dont feel sorry for myself, or like this is a sob story. I have no regrets, the surgery essentially saved my life. I feel more clear headed, able to concentrate better, my energy levels and alertness have improved. Most importantly I feel like myself, a better version of myself and have a more happy and positive outlook on life. Id give up that vision again for the benefits gained.

Ofcourse now the vision I have remaining is pretty critical. I would be lying to you if I said I dont have fears about making the final decision once the specialists offer my options as to what to do with the remaining AVM. But that is out of my control and I trust that they will be totally frank with me like they were before if any option is just too risky. So I wont let worry take over my life, once im recovered enough to get an angiogram done - they can go deeper in their investigations and risk assessments of each potential option and reach their conclusions. Then I can get as much information as possible to make an informed decision.

Welcome to check out my profile if you’d like to read more about my experiences. Feel free to ask me any questions and PM me if you’d like someone to talk to or confide in further depth.

I hope this helps calm your fears rather than the opposite! They are totally valid worries but I thought hearing from someone who has vision loss would help.

Best of wishes,

Corrine


#12

Good luck with your surgery- mine is 22nd March…
Please keep us updated :blush: xx


#13

Hello all. Thought I’d give an update on my brain surgery now that everything has settled down. 6 months post op and everything went well and is healing. Surgeon was able to remove my AVM in its entirety. I’m back to work and back to driving. No vision loss at all. I have began to notice some pretty bad anxiety that comes out of nowhere, and I have never had that before. Doctor said it a pretty common thing after a major trauma. I’m still on my 1200mg a day of trileptal, which I hate. I feel like its melting my brain. My memory is terrible now, I get lost in my daily tasks a lot, trouble remembering what I’m doing, or what i was going to say. I cant remember what cupboards things are in anymore in my own kitchen. I need to see the neurologist and see if a lower dose or maybe a different medication would be beneficial. But all things considered, I’m doing pretty well.


#14

Hey,

It’s great to hear from you and it’s good you’re doing well. I don’t think short term memory issues are usually occipital-related so it may be that your medication is playing a part.

Keep going!

Very best wishes

Richard


#15

Hi jn89 Im very sorry to hear what happened but relieved you didnt have a major accident when this occurred… Welcome to the family and please keep us posted on your journey as we are here for you… God bless!


#16

Glad to hear your AVM has been fully treated. I think it could very well be due to your medication. I know it is a differant medication but when I was on Topiramate it totally messed up my memory and caused brain fog. Like I couldn’t remember simple things and even at times was certain things that had happened that day did not happen. For e.g. my mum going out and returning with bags full and then a hour later I would ask her when she is leaving go to out the shops because it’s getting late. Alot better once I got off that awful medication.

However I have also had brain damage on My left occipital lobe and have noticed my short-term memory is considerably worse compared to back before my health deteriorated. From what I have read, poor short term memory is a common side effect of brain trauma. Hopefully not the case foe you though and purely a side effect of your medication not being compatible for you.

Best wishes,

Corrine