Coping strategies/advice? Do you/how do you prepare for worst case?

@ashleigh some of it takes time to process it. I was a bit shocked at my diagnosis and I’d say the bottom dropped out of my world. I was fortunate enough to be given an option to embolise mine (fill it with glue).

Since then I’m very good but in the waiting period, I was very bothered. I was advised to cut out anything that spikes my blood pressure, so coffee, chocolate, alcohol, smoking – anything like that – and one of the things I felt helped me feel more “protected” was to get a medical wristband, so if someone found me acting strange on the bus or in the street or even at work (though I talked openly with the people at work about it) medics would have a better chance of looking in the right place for something amiss first time. With a stroke of any kind, time is the key.

I got one of these Silicone Medical Alert Bracelet with Broad Band though they do slimmer two-line bands as well and more elegant bracelets, too.

And each time my diagnosis changed, I just bought a new one. It helped me feel a bit protected. You can also add your diagnosis to the emergency / health info on your mobile phone and make sure you have an ICE contact in your mobile phone emergency contacts.

Almost 31. Have a picture from way back when I was 10 in the hospital

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May god bless you and keep you safe always…
You look as though you were being supported on both sides with strong women!
Thank you for answering back it’s great to hear of success stories, it gives me confidence for my13 year old great-niece going forward. :pray::pray::grin::grin:

I am so sorry you are dealing with this! It is so hard. My daughter is 28, and has a spinal AVM that she had treated at Stanford Medicine with cyberknife. It was our only option. I would highly recommend you get a second opinion from them! You can send in images to them, and then they did a video consult with us. Dr Dodd and Dr Gibbs are our heroes. See what they have to say!

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I think it is fair to say that @ashleigh is getting the best care available in the UK, at the NHNN. In the UK, it is normal to have an assessment by multiple teams before a decision is made as to the course of treatment.

Ashleigh, it is possible to get a distant consultation with Barrow Neurological Institute in the US and (as far as I understand it) very affordable – i.e. circa $200 – if NHNN don’t give you any options.

The other place in the UK to seek input from re gamma knife (aside from NHNN) would be Royal Hallamshire Hospital Sheffield, as they also specialise in radiotherapy.

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Hi, my name is Mahir, l am from turkey and l am 40 now biological for my doctors l am 10 years old.xx l had my awm in august 2010 l was drivlng car . Had menaged to pull the side because l’ ce lost my whole vision.eventually stop ,opened the driver door .was feeling sick .there was a 12 years old shoe shinning boy next to me who l sported to his school fee. He scared when he saw me like that. The pain in side of my head was like two drill were trying go throgh of my head. Than l felt sick ,throw up, just green watery stuff (sorry :man_facepalming:t3: ) Ramazan the boy , that,s his name. I sent him to shop which was opposite while l was trying figuring out what was happening to me . Ge came vack with small bottle of water with scary beautiful green eye bless him .l was pooring the water all over my head thinking l must of got sick because of doner kebap l ate at lunch.l opened my phone and try to call my friend who is in water bisuness to get me to the hospital . He was selling water so he could be much faster than ambulance if l told him to shop name.tried to find his name on my sonny make mobile phone. His name was Serkan so l pressed number 7 four time to find his name on list. I could bearly read his name on the list.had to bring very close to my eyes to see. Eventually menaged to ring him. And thats all l remember that day

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My avm was next to left cerebellum next to brain stem. Had two operation. 10 years past nearly … had really increadbly difficult times but l got what ained for at the end ,l got incuary retiretment and dont need walking stick for nearly 4/5 years. Still have head adge . Gave forgeting problems. Even l dobt want eccept .l am more than happy to share my feelings and expericed with you . Allways gere to share more. Please feel free to reach me any time . With my best regards and respect .Mahir .

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I’m 57…i have a Right frontal parietal AVM with seven aneurysms. I just reached the three year mark post radiation and I’m still waiting for the miracle. Life is forever changed but I’ve done a lot of grief work these last three years and learned to live with fear and come to terms with the possibility of death as well as life with or without a rupture. It’s sure been a journey and it looks different over time. I’m honestly thankful i had 54 blissful years of not knowing. In that time i gave birth to two beautiful children and lived a full life! I’m still trying to do that but the knowing is daunting! My heart feels for you facing this situation as i know at least some of the pain and hard decisions you face in relation to your diagnosis. My advice is Don’t hesitate for a second opinion and prioritize a good medical team that includes emotional support for the trying times. You got this! The this just will be different than what you imagined. Courage comes from fear and resilience comes from overcoming hardship. You have just become an official warrior with this diagnosis! Welcome to the club none of us would wish on you. But know, we all love and understand you here!

Wow, that is a lot! - I’m sorry that this is happening to you, and although slow, I’m glad there is progress! Thank you, I hear you… I start with counselling support with how to help deal with medical things tomorrow. Also, I am incredibly lucky with the friends and family I have. If I am being honest, I do shield them quite a lot from how I’m feeling about the situation, but i do have a couple people I am pretty open to about it all, and I think the counselling will help too - also, finding this forum has been brilliant for me, truly!!! I know that no 2 cases are the same, but it helps to not feel so alone with it, and that the more emotional side of things are shared.

It’s good you’ve got a couple of people you can talk to. That has got to be a real strength: keep it up.

Hi Ash!
Find a neurosurgeon knowledgeable about AVMs and get treatment. Rupture will cause stroke. I had three Spinal AVMs which were successfully removed surgically but have had quite a bit of deficits! There are numerous FB groups and if chronic nerve pains hit as it did me there are also fabulous FB groups helping sufferers to cope daily! God Bless Vincent

Hey Jeremy, thank you - I think what you have said is really something I want to try and remind myself to stick with… still the same person, have confidence, and try not to be overwhelmed with worry :slight_smile:

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Hey eickhoffl21, wow damnnn!! I am so sorry you were and are going through this. I hear you, and to be honest I know I am quite similar in how I have dealt with things occasionally (drinking numbness) - I get that. Thank you so much for sharing with me! I start with a psychologist tomorrow :slight_smile:

Hey DickD, thanks for replying - I am so happy you said that… I just received my bracelet and it for sure helps me worry a little less. It also makes it easier to explain to people - if something happens then please call 999 and tell them to look at my bracelet :slight_smile:

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Oh wow, we are very close in age (I turned 29 two days ago!) - thank you for reaching out, I hope she is doing okay!

Thanks DickD… I will for sure keep all of this information in mind!!

WOW Mahir! Thank you so much for sharing… I am sorry you went through all of that. I really appreciate you reaching out - glad you are doing better though!

Hey Shelleybelle, wow 7 aneurysms?! I am sorry you have and are going through all of this. Thank you so much for sharing though. I hear you and really appreciate your words :slight_smile:

Okay guys, so I literally just got off the phone to a nurse and she said that from my angio - I am definitely a candidate for Gamma knife… but also a possibility that I may be able to have embolisation! The specialists have a meeting in 1-2 weeks to finalise if that definintely is a possibility and then I will have a meeting in 4-6 weeks to hear their opnions and make a decision on what to do next.
I was originally told that embolisation wasn’t a possibility so I haven’t had a chance to research that yet - but a lot of you have said that you had it… I was wondering what people’s thoughts on it are? Was it successful? What was the recovery like? If you had a choice, what way would you sway? (I know every case is different, and ultimately my decision, but I am still very interested on how you guys feel/felt about these treatments)

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I think embo + gamma knife sounds good. They’ll use embo to block the larger vessels and then gamma to do the rest. (You can’t get a catheter into the really tiny vessels to glue them up, so it makes sense to zap those).

Perfectly good option. Tbh I was concerned with gamma knife only as it sounds like your AVM is quite big and I was concerned that gamma would only work on the smaller vessels. So, sounds perfect to me.

Embo is more invasive than gamma knife but I’m a complete wimp and I got through it fine. I’d do it again if I needed.

Very best wishes,

Richard