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AVM Survivors Network

Hi, I'm a new member here. I have AVM and I would love to help others and share experiences

Good evening,

My name’s David, I’m 30 years old. Born in the UK and I live close to London.

In the summer of 2018…just after the football world cup in Russia.

I came home from work on a Thursday evening. It was the night before my nieces birthday.

I was doing excerise in my sister’s garden. Then I felt a forceful sudden urge to just sit down and rest. I had a bit of a headache and I felt like I just needed to go to bed. I thought I was simply just a bit stressed.

I went to the bathroom and I locked the door. I collapsed on the floor and I was in a state of bizarre shock. I had absolutely no idea what was going on…other then the fact that I was in a lot of pain.

I was vomiting too and then I passed out. I can’t remember what happened after that…but my family informed me of the slightly surprising details.

3 or 4 days later, I woke up in hospital. I had my family around me. I was probably in a good mood due to the medical drugs.

My short term memory had completely dismantled. It was an emotionally painful and pressurising experience. I couldn’t understand why my memory had rapidly declined in such a strange way.

I didn’t realise at the time, just how lucky I was to still be alive and to not have suffered an extreme long term injury. I was ok.

14 months later, I still require surgery. The AVM is above the left eye side of my brain. I think I’m stage 2-5 AVM. It has decreased in stage…but I’m still at risk, as it stands.

I had the gamma ray option too…but I would much rather just have the surgical procedure so it will be done and dusted, even though it carries a certain amount of fearful risks.

I have made many mistakes…but I have also kept fighting and I won’t ever give up.

It’s a very long story.

I have been very stupid and times and it inadvertently created a negative personality transformation, that I now 100% take sole responsibility for.

My surgery is likely to be in November…but I think it is going to get cancelled again and it will be later then that.

I’m currently doing some volunteer work, which I am proud of and it feels great. It is a role that I have personal interest in too. I enjoy working at the museum.

Feel free to ask any questions and I will also be responding to discussions on this website. I would like to see if I can offer advice and be of use to anyone else going through something similar.

It is a very strange and lonely experience…but, I remind myself that I am not a victim and it could have been a lot worse. :slightly_smiling_face:

Thank you,

David :slightly_smiling_face:

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Welcome! I’m new here too. Hubby was just diagnosed after having a seizure. He has yet to meet with a neurologist or neurosurgeon. Your positive attitude is inspiring and reassuring. Thanks for sharing!

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Thank you.

I messaged on your discussion :slightly_smiling_face:

Any questions, just let me know.

Thanks for your kind words :slightly_smiling_face:

Welcome Dave2I and Tofutti to the Ben’s Friends Network.
There’s lots of good people with similar shared experiences here, so we know and have dealt with many of them ourselves. No two journeys are exactly the same but there are a lot of similar experiences as you will find through browsing the site.
If you have specific info you are looking for there is a small magnifying glass on the right, in the green bar, which can assist in your search.

Dave, I have to agree this can be a ‘very strange and lonely experience’. It’s only by sharing our experiences that we and others can learn that we are not alone.

Merl from the Moderator Support Team

Hello Dave , my name is Yania . I also recently signed up for this website and it have been really helpful to read other people stories, for me it have made feel that I am not alone in this war .I am also considering getting a surgery as I have seen few doctors saying that in my case it is a good option. I have done other procedures already but at the end the only thing that will remove the AVM completely will be the surgery , I am now trying to get the right doctor to do the surgery, a doctor with a lot of experience in these types of surgeries .

Best of luck , and Welcome !

Yania

Yania,

All the best to you.

Where abouts are you based? It is very hard to get a good surgeon with a good team due to the fact that it is obviously a very complicated proceedure and it takes a lot of time.

Are you seeking private care?

David

Hi Dave!

Welcome to avmsurvivors! I just thought I’d say “hi” from someone else in the UK. I’m up in Leicestershire and had an embolisation at Queen’s Medical Centre in Nottingham.

I know less about craniotomy but I would think NHNN might be near to you and difficult to beat. Are you being advised towards craniotomy or embolisation or radiotherapy? As I say, I’ve been through embolisation and I’m happy to chat.

Best wishes

Richard

Hi all AVM Newbies! Welcome to the AVM Survivor’s Network. We are here to support and encourage all who are traveling down the AVM highway. A highway marked by many twists, turns and detours while leading you to a place of understanding, healing and survival. We have so much to share with you and I am so glad you found us. Know that you are not alone on this journey. We are here for you. Best wishes.

Sharon D…

Hi Richard,

It’s craniotomy for me.

It appears to have the least amount of risk for the long term.

I’m lucky enough that my AVM is just above my left eye, in my brain, so they think they can get to it and remove the problem.

The odds are just about in my favour.

Happy to hear that you are all good now. Congratulations.

I have an Angiogram tomorrow and I’m likely to find out my 4th surgery date on the 25th of October.

I’ve unfortunately had 3 seperate cancelled surgery date appointments.

It’s a heap load of yo-yo anxiety…but it could always have been worse and I’m just about feeling positive for the future.

Good to hear from someone else in the UK.

My surgeon is Dr Tolios from kings college hospital and he is apparently one of the best surgeons in the country. I’m greatful for that.

David

Sounds good!

Have a good day tomorrow!

Hello David:

I am considering neurosurgeon that are in my insurance network. I have two appointments coming up in the next weeks and then I will decide .

Thank you for your response. Hope you are able to get your surgery soon!

Yania

Thank you.

Had an Angiogram yesterday. Rather tense and scary. Especially the moment where the doctors thumb is pressing hard on the artery. That that
i can actually see what they are doing or what is going on …will hopefully fully recover in a few days.

Just a unusual numb pain. Feels rather sensitive.

Yes I also had an angiogram before the embolization and it is really weird the sensation of combination of pain, burning, I was scared at the beginning but I understood later that it is not as risky as I thought and it really help to do the diagnosis right .
Hopefully the surgery for all of us that are pending have good results as well .

Take care and keep the group posted !

Hi David,
I was diagnosed with an AVM in May 2017 following my seizure in June 2016. I had Gamma Knife surgery in July 2018. I had this done at the NHNN in Queens Square. The team are great and have been helpful in my recovery. The road to recovery so far has been full of ups and downs. Especially this week, I’m currently off on sick leave recovering from increase migraines and pressure headaches due to recent increased swelling near AVM. My work colleagues are very supportive which is very helpful.
If you need any advice I’ll try my best to help.

Take care.

Yes, that bit hurts. Well done for getting through it nicely.

Best wishes,

Richard

Thank you I will do, and good luck with yours.

My new craniotomy surgery date was confirmed today at a meeting. It will be Monday 11th November, as it currently stands. Just over a few weeks away.

Hopefully it won’t change again and or get cancelled.

I asked my surgeon about possibility of increased potential post mental health issue after the surgery. My AVM is is my left frontal temporal lobe, but he said it is brain tissue that is not a fearful location.

I felt as lucky as I was surprised.

I should be greatful about the fact that I have a simple enough version of a bad situation.

I’m currently suffering a bit from depression and it is quite unusual. I usually have a lot more energy then this and I’m a lot more positive. I just feel very mentally and physically weak…but I know it will pass.

Thanks for the support. This message board is pleasant and useful.

Sorry to hear that.

What were your advised original options?

Will the gamma ray surgery take a number of years to be completed?

Can you get in touch with a professional as soon as possible regarding the headaches and pains?

Get better and look after yourself.

Always here if you want to discuss.

Here for you

Hi David,
The original options were embolization, gamma knife or do nothing.
I’ve been told by neurosurgeon that it can take a maximum of 4 years for the AVM to be completely obliterated.
In the meantime I’ve had an appointment with a neurologist Re: managing migraines. I’ve been recommended nasal Sumatriptan for now. If things continue to worsen then may need to take prophylaxis drugs.
For now I’m looking forward to some much needed me time. I just need to forget about work and the stresses.

Thanks for the support. :+1:

I agree :slightly_smiling_face:

You need to have some pleasant time for yourself. Do what makes you happy and don’t look back.

Give yourself something to look forward to and create plans. You deserve a nice break :slightly_smiling_face:

I can recommend some things…but of course, it depends what your hobbies are.

All the best

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Hi there

I got AVM and hydrocephalus during riding car after exercise in gym being dehydrated in rush situation. Suddenly I stopped car and guy nearby called hospital. I lost my mind and wake up after 2 weeks in hospital. Then neurosurgery, implemented shunt drying bleeding and after 6 months Gamma knife treatment and now 5 years angio check up and no malformation anymore, neurosurgeon said. I am totally healed. If you can go for gamma knife treatment for sure!