Hello! I am Kitty x

Welcome & Help New Member Introductions
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Hi

I am Kitty. I am 42 and live in the UK.

Following on from two MRI scans on my brain I have been told by my GP that I have abnormal blood vessels on my brain and that the concern is that they may burst. She has told me there is more than one. I am waiting for a neurosurgery appointment, but have been told that as I have not had a bleed I will have to wait for a routine appointment. So I have very limited information at the moment.

My symptoms are currently headaches, facial pain, dizziness, pins and needles, bain fog and I feel slightly off balance. These aren’t continuous, but I find the brain fog and dizziness the hardest to cope with.

I found out 3 weeks ago and have so many different thoughts about it, I will try and put them in some sort of order.

I have cried a lot and been very scared at times. What will happen if they burst when I am alone? Will I be able to get help? What will the future hold for me and my young family.

I am also very relieved that it isn’t a brain tumour, as three of my cousins have had one of these, two are now deceased - this is the reason why my GP sent me for a scan. However, my Mum and Granny had a stroke in their 60s. It is 7 years since my Mum’s stroke and I can see what an uphill battle it is for her.

Despite having a loving husband, amazing sisters and some supportive friends, I feel very alone at times. I can’t keep constantly telling them ‘oh I feel dizzy’ or ‘my brain feels quite foggy’, I don’t want to worry them and let’s face it I would be telling them every day. But life can be hard work because of the symptoms. I have quite a demanding job and just hope I don’t have brain fog every time I lead an important meeting!

Overall I am trying to be positive and hope that maybe the best case scenario is that I won’t have a stroke until I am 64 like my Mum or that it won’t happen at all. Over the last few weeks I have pushed through and gone and done things when I haven’t felt well, as I can feel that I will become very isolated otherwise. I am gaining strength from this as I am able to reflect back and think things were okay even though I wasn’t well. However, there are dark moments, when I worry for my children and my husband. I also feel so many things have been closed off for me, How can I get a new job now? I don’t feel I can move house or travel abroad. But I am determined to push these thoughts away, as today I am still alive and well!

Kitty x

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These are all normal thoughts from anyone with an avm. Don’t feel bad about this. All we can do is keep moving forward and live life the best we can.

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Stay as positive as possible, You could have been born with the AVM and I am guessing you have been fine until just recently, from what I understand AVMs grow very slowly and the main thing is it’s been discovered and things are now being put in place to get it sorted out.

I don’t think your GP is correct in saying it won’t get seen quickly unless you’ve had a bleed. The idea would be to prevent any problems not wait for them.

The way mine worked was after my MRI scan my GP got the results by email, he then emailed them to the nearest neuro hospital, they have a meeting every 2 weeks to discuss new cases. They saw my pics and called me in for an angiogram, over the space of about 6 weeks.

Moving on with life does seem hard and sometimes I struggle. (today was harder than yesterday). But you have to stay positive these things can be fixed and they will be, it just takes time. The people on here will help you stay positive I know they do for me.

Like you I worry about my family, I am I know it’s sad but I have and am doing putting into place everything for them to make it easier if something does happen. but really I should do that anyway…I might get hit by a bus tomorrow anyhow.

I hope this helps… any worries you have just let it out on here.

Matty

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Kitty,

Welcome to the site: Thank you for telling your story and starting a new conversation. I’m not very different from you: I’m in the UK, I’m dizzy, I can have headaches and I can actually hear my AVM. It has taken ages (literally a year) from seeing my GP to having an operation. I am due for an op next week.

Meanwhile, best advice is keep your blood pressure low: don’t smoke, don’t drink, come off coffee and chocolate. If you’ve got a stressful life, balancing work and home, think about taking the pressure off there if you can.

Losing the coffee and chocolate took me out of headache city. I have been broadly headache free for a few months. Not 100% but a marked improvement.

I’m also on an “elective surgery” list, so you are completely at the whim of how many more serious cases are admitted and you’re behind them all. The MRI should give the neuro team a good idea how much of a risk you’ve got, so nag them until you get that first appointment.

If you get any immediate symptoms – sudden, significant dizziness, migraine, etc. – treat it as urgent and follow the advice given by hospital or GP. In my case, they said anything significant, go straight to A&E. For the most part, we only seem to become a priority to the NHS if it is literally and immediately life threatening but I would advise keeping either hospital or GP appraised as to any degradation.

Overall, many people live with these things for a long time before they strike. The best advantage you’ve got is the MRI shows what it is and you’re on the right course for a neuro appointment. Lots of people get misdiagnosed for ages before getting to an MRI, so you’re on the right trajectory.

Keep us informed. I hope others will chip in as well: there are plenty of us here: and welcome to a dispersed and varied new “family”. We’re here to support you as much as we can.

Best wishes,

Richard

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Hi Kitty, being a fellow person from the UK the waiting is hard for everyone, I used to just say to my wife, rather than trying to explain what was going on, I need a rest. And I would go for a lie down for 30 mins till I felt better, What I can say is since your AVM hasn’t burst yet then to minimise the risk try to keep your heart rate low and stay relaxed, Its not majorly important but these things do help mitigate the risk, There are various things that are blood thinners like Alcohol and ibuprofen , Think about cutting down or cutting out these (I still drank alcohol when I had my AVM but just not heavy) Lifting heavy things (That cause you to strain) try not to do this. You can do anything you want to do, There are people here that have done incredible things with there AVM’s and never looked back, I’m 40 years old at the moment and had my stoke when I was 36, It has not stopped me doing anything at all, I’m lucky enough that I’ve had 2 brain surgeries and have no deficits from thee surgeries at all, The surgeons in the UK are fantastic and do these surgeries every day, You WILL be fine :slight_smile: , Sure we all have doubt at some point, But shake this off and find something that brings a smile to your face and makes you think positive again, For me it was the song “3 little birds” by Bob Marley and I was just sing in my head “every little things going to be alright !” And guess what … it was ! :slight_smile: . You’ll be the same I also had the same pressure of a family as you do, So like to think I know what your going through. Take care

Martin.

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Thank you everyone. It is good to know there are people the same age as me with a family going through the same thing. I am feeling quite positive this week and have noticed how stress and upset make my symptoms worse, so positivity will be important to me.
Thank you for all the tips on what to avoid. Have any of you been given advice regarding flying?
I have chased my NHS referral today, as I am considering a private consultation to talk through my results.

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Dear Kitty,

Go back to the appointment people or to your G.P. and demand a neurological consult ASAP. The symptoms you describe–headaches, facial pain, dizziness, pins and needles, brain fog and I feel slightly off balance–are all ACTIVE symptoms connected with the abnormal veins in your brain. I know your health care is a completely different system than the one we Americans have (I lived in London one upon a time); I know waiting is part of reality. However, I am a firm believe in being pushy and in stating the truth.

All your fears are ones most of us have experienced, too. I am 71 now and wonder some of the same things. You sound lucky in having a loving family. I know you do not want to worry them, but it is important to let them know how you are feeling.

Good luck.

-Elizabeth

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I asked about flying also, Was told to avoid it while my AVM was still active since it had already burst once and they didn’t want me to have the risk of being in flight if this happened again or out of the country etc … So this one really depends on your AVM and the location of the flights, Best to ask your doctor :slight_smile: .

Thanks Martin