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AVM Survivors Network

Hi I'm Susie

I still do not know how to use this site. I have just been scrolling through things to see what others have said.
The reply button i understand but how i post what has happened to me i have not a clue.
I seem to be so much older than most others on this site and before the burst aneurism in the brain avm i apparently have i never knew anything about it. In the beginning i didn’t want to know as the GP surgery seemed to treat me as though i was dead, so i tried to ignore them. I was apparently lucky when it happened in that the air ambulance was called and i was airlifted to St,Georges Hospital in London where i apparently stayed for five weeks. I remember not a lot about it. I was really scared as i have a husband five years older than me who couldn’t cope as i wasn’t there to help him so when he fell three weeks after me in our laundry room and couldnt get up he had to lay on the cold floor all night until a kind neighbour found him the following morning when she came in to feed our chickens as i wasn’t around, He was ambulance to our local hospital where it was discovered he had had a mild heart attack and was suffering from pneumonia. I also have two westies who are only nine so their future concerns me more than greatly. i never expected this to happen to me. We have no family nearby.
So it has taken me a year to now need to find out more and how i deal with things,
I do know St. George’s hospital said my blood pressure was to remain low (which it is naturally) but no medical person has bothered to check it. They also said i was not to exert myself and to let others deal with things so i now have to have hired help in the house and garden. I am not to use things like aspirin or paracetamol, I don’t anyway. The burst aneurism is apparently not the only one and St. George’s said it was inoperable as it would likely leave me worse off but that could change in the future. The burst aneurism has impacted the fourth nerve in my brain so affected my eyesight. I have ‘sensations’ in my head but these have become less with time. I would have thought St. George’s hospital did some sort of discharge paper for me but i don’t know and don’t have a copy if there is one. I am trying to find out from my GP but a telephone call to speak to someone is a three week wait.
The physiotherapist’s at the local hospital have been more than wonderful. They have now signed me off as they can do no more for me but supplied me with a beautiful rollator before they did as they say i will always need support for my now dreadful balance. I cannot save myself without support if i go to fall so i always ensure i have support. I had to surrender my driving licence to DVLA and whether the eye department at the local hospital can supply me with spectacles that will improve my eyesight remains to be seen, My husband doesn’t drive; i was the only driver so with no pavements in our what used to be a country lane but is now a busy cut through for traffic due to a lot of building work we cannot exit our house without help, Life is difficult from what it used to be and i am only now feeling mentally strong enough to start finding out more. My husband and my two dogs that depend on me are my greatest concern.
So that is my story and i am intermittently exploring the avm survivors website to see what others are doing and whether there is an option for me to improve things for me and mine, Their future concerns me greatly,
Susie

Hey Susie,
Welcome to Ben’s Friends.

“The reply button i understand but how i post what has happened to me i have not a clue.”

Let’s see if we can help you out with this.
In the green bar just above, on the right hand side there are 3 icons ‘Search (The magnifying glass)’, the ‘Topic list (3 bars)’ and Your avatar (The fawn coloured ‘S’)
If you click on the 3 bars a drop down menu will appear.
If you then click on ‘Latest’, a chronological list of members posts will appear. Just under the green bar, under your avatar, on the right, you will see ‘+ New Topic’.
If you click ‘+ New Topic’ a dialogue box will appear and you can make a new post regarding ‘what has happened to me’, or any other new topics you wish to post.

“… i never expected this to happen to me…” None of us ever do and coming to terms and the realisation of it all can be HUGE. That’s what we are here for. Who better to get information from than people who have been there themselves? Most of our stories are never exactly the same but you may see parallels between some testimonies and your own.

I would also like to point out that their are Social Services out there, who are there to assist. Your age is actually of an advantage here, there are a whole range of aged services that you should be able to access too. Governments are trying to keep people who can, living in their own homes, for as long as possible. To accomplish this they have set up ‘In home supports’. Here are a couple of links that may help.

https://www.kent.gov.uk/social-care-and-health/care-and-support/how-to-get-help

I have to say here, I was the last one to ever say ‘I need help’, no matter how obvious it was to everybody around me. So, I pushed myself harder and harder, only to grind myself into the ground (Idiot me). Eventually I got to a point where I had to admit I couldn’t do it all on my own. This was one of the best things I could have done and only wish I’d come to the realization sooner. Those services are there to help, so please use them to your own advantage.

I hope this assists you in some way and please don’t be a stranger. We know what all of this is like because we all live it too, so come talk to us.

Merl from the Moderator Support Team.

1 Like

Welcome Susie! Its unfortunate that most end up on our site but know you’re among friends with a tremendous amount of experience dealing with a vast variety of things related to AVMs. I’m from Canada so can’t speak specifically to services to help you out really any further than what Merl has. We have a number of folks here from your neck of the woods who have vast experience with your systems, I know some will provide some of their experience. Take Care, John.

Hi Meri,

Thank you for your support. it is just so nice to know there are others out there with similar or even worse problems and to know we can search the site to try and find solutions to our problems.

Something i have been wondering is, is there some sort of wearable devise that would alert the medical people to our problems so we could obtain suitable help soonest. When i left hospital and was brought home the first thing i did was register with our local Lifeline organisation and now wear one of their pendants and when my husband was released from hospital i added him to their records so he also wears a pendant. Unfortunately he is not conversant with all things internet related and does not even have nor know how to work a mobile phone which puts him at a distinct disadvantage when the youngsters all go around with mobile phones glued to their ears and it seems the only way to glean support, services and information is via the internet. Oh for the days when i was a youngster!!

Susie

From Suzanne’s iPad.

Yes, there most definitely is such devices. Here in Australia they are available via the Red Cross (for a fee), The base station is connected to the phoneline and then you have necklace with an alert button which communicates with the base station.
I am unsure exactly which services are available to you in the UK
BUT here’s a link to a very similar devices I believe. But yes, they are available.
https://www.indeme.co.uk/

Merl from the Moderator Support Team

Merl, Susie,

I don’t think there is an alert device specifically for brain function, only an alert necklace, which is what you are both describing. Susie: I’m pretty sure you are saying that you’ve already got an alert pendant, so I think that is as good protection as there is.

I bought myself a medical bracelet for when I am out and about. You can get them made up with your name, date of birth, medical details, your NHS number on and a phone number for someone like a son or a daughter who can help explain your condition.

Best wishes,

Richard

2 Likes

hi, Yes Dick, what i am describing as Lifeline is a pendant button connected to our phone line. It can only be heard in our house.

What i was wanting to know was there something to wear that would alert medical people or whomever to our condition/problems whilst out and about. Your medical bracelet sounds a good idea so will look at that.

By the way, i do not have any children. All my nearest blood relations live in California, and my husbands two sons do not bother to visit nor send him a birthday card and he was estranged from his youngest son many years ago. It is one of the daughters in law who has been of help but she lives a two hour drive away and has a job and family of her own. We manage on our own with the occasional help of neighbours.

Thanks for all your advice anyway which is most appreciated.

Regards,

Susie
From Suzanne’s iPad.

Well if you’ve told your neighbours about your condition, you might put their phone number on. It just needs to be someone who knows what you’ve got, so if you’re found a little confused in M&S or decorating the floor of the bus or something like that, having the phone number of someone who is able to say “she’s got one of these and she may be having a stroke” is helpful. If you’re of a certain age, people may assume you could be having a stroke but as a younger man, I thought people might not think of a stroke.

Whatever works for you. Having one helped me relax a bit.

Best wishes,

Richard

Thanks for clarifying that Susie
I agree Richard, I don’t know of an alert device specifically for brain function either. Afaik such individual devices need to be individually setup as each persons natural rhythms are different. So having a set median for the population/mass production would be impossible.

Merl from the Moderator Support Team

1 Like

@Susie Hello and Welcome so glad you found this site. I am so sorry you had a bleed and that your husband had a heart attack.

I too am younger than my husband and never thought I would be in this shape. I am in the US so we have different support. But I wanted to share there is a great book by a professor from MIT aging Lab and here my notes I think this link will work https://docs.google.com/document/d/10MNWDbRLDKyyczNRnNGdtfMMJ2QDioiWdYlVspRDuRs/edit?usp=sharing
I am volunteer on local counties aging commission and we have a friendship line here for people to check on people- we also have what we call villages where people pay a yearly fee - in my town I thinks $700 and you get people who will come and do chores in your home like gardening, organizing, driving you to what ever you need. I am volunteer to this org as well.
We also have senior centers where they serve lunches during the week and do different classes and it for everyone. I am not a senior and I always go to their Bingo Pasta night which is so fun.
Another fun free tool one of speech therapy people told me to do is https://www.gamesforthebrain.com/ I still do it.

Listen to your body when you need to rest do so but keep your mind active .
We are here for you and this is a safe place to vent this sucks and we understand and its scary,
Hugs Angela

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Welcome to this site, Susie!

Let me say that your story was heartbreaking to read. First, your own health issue; then, your husband’s! Then, to read of your deficits (vision, mobility,…) and difficulties managing life on your own in a home in the country (?)… It seems overwhelming!

I am so glad that moderators from the UK are available to walk you through some of the services available. It’s nothing with which I could help, as I live in the US. As far as obtaining your medical record, are you able to obtain a copy of it by law? In the US, any adult is legally able to read and/or obtain a copy of it by providing proof of identity to the medical records department of a hospital or clinic. Perhaps a Moderator could clarify this?

In addition to the continuing care you and your husband need, you mentioned your Westies. Is there a nearby shelter or animal rescue that could lend a hand? At the shelter at which I volunteer, there is a program to assist seniors with needs from time to time. There may even be volunteers who might help with vet visits, or with walks? The goal is to keep seniors and their pets together. It is beneficial for both. (I don’t know what I would do without my cat, a senior Manx.)

Let me also congratulate you for your determination and “grit” over the past year! You are an amazing woman! And, remember, we are here to support you in any way we are able.

Lifeisgood

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Hi Lifeisgood,

How wonderful to receive your email. I do like hearing from others.

Although i live in the U.K. i do have a lady friend i call ‘sister’ who now lives in Miami. She and I shared an apartment in London for twelve years in our younger days before we

were both married. Unfortunately her husband died three years ago and last year she had to put down her wee yorkie dog. Her son is my godson but so far away is not much use now to me in helping out besides which he has a job, a wife and a son to look after and american and U.K. laws do not allow us to intermingle. My nearest blood relatives also live in California - a surviving uncle (my father’s brother), his son, three grandchildren with five great grandchildren. Unfortunately families spread all around the globe are not much good in later life!!

A moderator in the UK has been wonderful with ideas and i am seeing my doctor this week to find out about obtaining a copy of any notes the hospitals might have made so hopefully after that i might be more informed. I am under the impression that i am able by law to access my medical notes but i shall no doubt find out this week! I am beginning to be under the impression that people do not really understand a burst aneurism in a brain avm. People seem to be calling it a stroke which i suppose it is in a way but a burst aneurism in a brain avm and not a blood clot so i would assume any treatment would be entirely different. Fancy having a brain avm all my life and not knowing it.

It is my westies that concern me most. If/when something happens to me, what will happen to them. My husband is five years older than me and would not be able to look after them for any extended time. He would need assistance himself if i was not here to see to him. I do now have a dog groomer and a dog walker for three days all to the house; we also now have to have a cleaner once a week and a gardener to see to the garden and cut the grass. Before February last year i used to do all these things. It is so hard to go from being fit and able doing everything one day and the next day having to have help with absolutely everything.

There are assisted living apartments in this country but not apartments suitable to have dogs, so we stay put for their sake. I always said i would live long enough to look after them never expecting this horrible thing to happen to me. An assisted living apartment would be wonderful but i would have to find a new home for our westies. My husbands children from a previous marriage would be no help. Anyhow, that is the current situation. Will just have to keep plodding away and see how things work out.

Do keep in touch. It is amazing how most of my friends are spread around the U.K. and the world when others families do not seem to spread their wings at all. Not spreading wings would be so helpful to me now!!

Best wishes,

Susie

From Suzanne’s iPad.

1 Like

Hi Angela4,

Not used to this site yet. Thought i could respond just as though a message was like an email but guess it isn’t. I have a lot to learn. Can you clarify for me that you can read my reply to Lifeisgood so that you will be aware of my ‘history’.

I have accessed the website you noted and read it all. It was interesting reading. Although i have had a burst aneurism in a brain avm St. George’s hospital in London where i was airlifted to must be absolutely excellent as it doesn’t seem to have affected my memory. Initially i had a hard time remembering names, places and how to do things, but it all seems to have come back to me and what i cannot instantly recall, when i look it up i then don’t forget it. So my brain seems to be functioning as normal! The only difference is i seem to be more talkative whereas before i think i was rather shy and reserved!!

Keep in contact.

Regards,

Susie

From Suzanne’s iPad.

Ah, Susie!

I wasn’t expecting such a rapid response! You really do seem to being doing quite well, considering the nature of an AVM…and a ruptured one at that.

I suffered the rupture of an AVM 26+ years ago. I had been a critical care nurse, but back then we did not see AVM patients. There were only beginning to be surgical techniques for AVMs that were discovered through angiograms of the brain. In fact, I attended a lecture by Dr. Charles Drake of Ontario, Canada, describing the operative techniques! Never did I expect to be so well acquainted with AVMs!

I learned how absolutely miraculous my survival was. I had a number of deficits, which I would rather not run through right now. (Fatigue!) I would notice slight, but significant, improvements little by little. Of course, at the same time, I have gotten older, with all that comes with it!

I understand how your Westies can be of concern. A good friend had a cutie named Libby. He cared for her into old age, until she passed. I adopted an eight-year-old Manx cat from a so-called “no kill” shelter. If I pass first, they will take care of him until someone fosters or adopts him, or keep him there until his last days. Very comforting.

Regarding your medical records: Unless you have a medical-type background, you may have difficulty reading and understanding them. But, it can be done! We did have a “stroke”. But, a hemorrhagic stroke, not the type suffered by the majority of people. What comes to mind for most people is the kind of stroke caused by a clot. You and I, and the folks here, are left to educate the world about AVMs, and ruptured ones, in particular!

Spring is approaching. Time to make a fresh start…

:tulip::tulip::tulip::tulip:

Just a bit more regarding this point. I have a had a bit of difficulty in obtaining such records myself. Sometimes they can use this ‘lack of medical understanding’ as a reason not to release certain documents to patients. BUT, if you have a dr you trust you can get any such reports forwarded to them for a more complete explanation.
Also some FOI requests can be a long drawn out process. Having a Dr involved in those processes can shorten the time.

Merl from the Moderator Support Team

I’m pretty sure Susie can simply ask the doctor. There will be a form to fill out and a small charge to pay but under the Data Protection Act 2018 in the UK (also known as “GDPR”) hospitals and other businesses are obliged to share with a requester who is the Data Subject information that is held about them.

I do agree that reading medical records is fraught with difficulty, so it is best if those records are sought in order to pass to another doctor who can read the important stuff from among the gobbledegook or less worrisome stuff, otherwise reading med recs can be frightening. Some people have private “second opinion” insurance, so requesting records for that circumstance makes sense.

It isn’t a FOI request in the UK… FOI is not allowed to reveal personal information, only general stats etc. In the UK, I think it is called a Data Subject Access Request.

https://ico.org.uk/your-data-matters/your-right-to-get-copies-of-your-data/

Richard

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hi, Dont know whether everybody can read this but i am getting further forward with trying to find out things. The doc gave me a copy of the discharge from the hospital i was airlifted to, which was what i wanted. She also took blood pressure, which i have to keep low, and was satisfied. Discovered my brain avm is in the centre of head surrounded by a space which is where the aneurism bled into. If it had bled into the brain tissue i would have had a different outcome. So that is why an operation is not advisable. Also that i was probably born with it. No problem until now so maybe i have been lucky. Advised to lead as normal a life as possible. The eyes are still a problem. Hospital vision testing during the week with an ophthalmology appointment next week when maybe i will find out what they are doing. So that is me up to date. Trying not to think about all the things i cannot now do and my husband has been wonderful. Just thank my lucky stars we do have the nhs.

Susie

From Suzanne’s iPad.

Susie,

It sounds to me like you’re doing the right things. I think worrying about this stuff is completely counterproductive, so if you can just carry on, not worry about it and keep your blood pressure in the right place, that’s as much as you can do as self-help.

Very best wishes to both of you!

Richard

1 Like

Hi Susie:

Welcome to the AVM-ers group. We’re a great bunch of people who love to support, encourage, and care. We have all been in those early stages where it seems everything is a blur. Although we are not there with you, we can offer suggestions to make life better. Just reach out to us. I’m wishing you, your husband and your doggies all the best.

Sharon D…

1 Like

I know i haven’t been in contact lately. I am trying to keep my blood pressure low and not worry about my head problem. Before this virus thing my friends were wonderful and visited and took me out with their help. I have been one lucky lady. Now this virus is keeping me and my husband isolating and i have been busy dealing with all the people that help me and setting things in place that we can continue to live our lives and not get the virus. So i haven’t really had the time to be in contact with our networks that is if i wanted any sleep.
I will be back online when this virus is dealt with.
Good luck to everyone.