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AVM Survivors Network

My story so far-Updated


#21

Hi Charlotte!
I also love in manchester and have recently undergone treatment for my AVM. I opted to be sedated for my angiogram (at Salford) which helped me a lot but in hindsight, sure I’d have managed without although think I’ll ask for sedatives for next one too!! I’m happy to chat if you think it’d help ever.
Take care,
Alex


#22

Ooh hi @Alex5. Salford royal is where I have been referred to. How did you arrange to be sedated? Was that on the day of before your appointment? What treatment did you go with? And where was your avm?
Thanks for your reply, I hope you’ve recovered well


#23

Hi CharlotteLouise, it is frustrating isn’t it. Secretly I do still keep the same hope, that treatment will cure headaches and fatigue. But I have come to accept these symptoms and that I don’t know whether they will be gone after treatment or not. Doctors say my only reason to be treated should be prevention of hemorrhage. But that might be different for every case I guess! Every (history of) avm is unique. So what has been told to me doesn’t necessarily hold for you too. Talk to you doctors and keep on asking all the questions you have. I kept a paper on which I wrote down every question or comment that popped into my head. Ask if you can schedule an extra appointment with your neurologist before the angiogram. In my case the angiogram itself took one hour to perform, I had to lay still for four hours afterwards and I could leave the hospital that same evening. They can see better (than on MRI) how the arteries that feed the avm run and the draining vessels, also the amount of bloodflow through the avm can be seen clearly.
I have not decided yet but I now everything points towards surgery.
-Karin


#24

The team there were FANTASTIC. I spoke to them before hand and explained I was incredibly anxious etc. and arranged it before hand. I think it was the right decision for me but I also went under GA for my gamma knife. Let me know who your consultants are etc and if chatting would help, I’m absolutely happy to. X


#25

Hi Charlotte,

I can’t comment on the headaches - I did not have any but I have had a couple of angiograms, one at John Radcliff in Oxford and one in Sheffield Hallum. Neither procedures had any sedative although Oxford gave me some Lorazopam to calm me down. It is actually painless. I think it is was the number of people in the room which scared me most the first time in Oxford - you know - jeez, how serious is this? But they both went fine. A tiny prick is all you feel, which is the local. Then you don’t feel anything else from the needles or the catheter they put in. The contrast stuff they inject came with explanations before they injected it - one of them was great: You’ll see a firework display - it was great, but short-lived. One made me a bit dizzy and one made my head very warm, then hot - then it suddenly stopped. No pain, just a bit strange. In Oxford I had to lay flat for 8 hours and in Sheffield it was only six hours - but that was the day my AVM got zapped - it was a long day. The NHS is absolutely brilliant! You’ll be OK, nothing to worry about, even without sedation.


#26

@Kare have you already had a bleed from your avm? I’m not sure which treatment options are available to me just yet but if I get given the chance to have surgery I think that is the option I’d most prefer. I like the thought of it being completely gone and I can carry on as normal but I also accept that this treatment has the most risks. I am already reading up on all treatment options but I am tying to be open minded as I’m not sure yet which will be best for my very own avm.


#27

@Alex5 I had my appointment at Salford on Wednesday and already cannot remember the name of the consultant. I am going to take some paper and a pen next time and make notes. I feel like a lot of what they say goes right over my head, not because I’m being ignorant but I still haven’t really taken it in yet what is happening. Do you know if the gamma knife has been successful yet? Do they shave your hair for gamma knife or does it go through your hair? That is probably a really stupid question and would not really play a part in my decision but I am just trying to be as prepared as I can be. Thank you for replying


#28

Hi @chrisf, I know this probably sounds really daft but I am most scared of how the injected stuff is going to make me feel, I am scared of feeling dizzy and usually if I get dizzy it does make me sick. I’m more worried about the effects the injected stuff will have on me rather than the pain. I asked the consultant I saw on Wednesday if my angiogram would be done under sedation and he said no, I did tell him I was already feeling quite scared about this but he never really said anything so I thought sedation must not be available for this kind of procedure. I have had a few minor operations in the past (nothing to do with my brain or avm) and I’ve always had a pre med to calm me down, gas and air to knock me out (because I’m scared of needles) and even once had my mum come down to the room with me and hold my hand until I fell asleep breathing in gas! So yes… very nervous patient but I am trying my best not to be difficult


#29

Hi, I had my gamma knife in January after a lot of deliberation and lots of lows points, about 2.5 years!
I won’t know for a while if it was successful, probably 2020 at earliest, so for now, I’m focusing on being positive and trying to get through the part where side effects are most likely to occur. My AVM sits on my optic nerve so there’s a risk of visual damage.
No head shaving. Don’t think they ever need to with gamma knife. X


#30

Hi Alex, what are the side effects of radiotherapy? How do you feel after you have had it done? Does it make you feel ill? I have been told that I risk my vision with treatment because my avm is on my occipital lobe. I’m not sure which treatments have the highest risk of damage to my vision or even if they all do or risk percentages or anything. I am hoping that next time I go I will receive a lot more information. Does the radiotherapy not make your hair fall out either? Sorry for all of these questions x


#31

Charlotte,

Hi. It’s interesting reading your story and all the questions you are asking. I do think you will serve yourself well by not worrying as much. Let me see if I can help a bit.

I would definitely talk again to the neuro about having something to help you relax in the angiogram. It really is quite straightforward. I’m not very good with needles and things – I can very easily get a vasovagal syncope – so my first angiogram the interventional radiologist did when I was under general for my embolization. I was happy with that because of my vasovagal problem but it meant I didn’t know what we were about to do (or see any pictures) until it was all done. My check up angiogram we did under a local anaesthetic – just where the cannula goes in – and it was absolutely fine. The doctor talked me through what was happening at each stage “right, now you’ll feel a hot flush on the left; might make you feel dizzy”; etc. It was absolutely fine. Honest.

My third angiogram I went in all jolly and the doctor didn’t really talk to me and I went vasovagal. However, the whole theatre stopped, they looked after me and I chatted with one of the nurses through the rest of it. For me, that explanation and distraction was enough to keep my mind off the bit I struggle with and it was also fine. There’s a decent size team in the theatre with you: the doc plus two or three nurses, so they can look after you.

Any dizziness I think is only if they inject material that then flows past your cerebellum or the part of your brain to do with balance, as it obviously disturbs the brain on the way past, but it literally lasts for seconds. I don’t know, maybe 4 or 5 seconds maximum… something like that.

Ask again about something to help you relax and talk about your previous ops and I would hope they’ll listen.

In terms of the vision loss, if your AVM is in your occipital lobe, the most common vision impact seems to be to lose some peripheral vision rather than central vision. I know @corrine has a significant AVM in her occipital lobe and was starting to lose some segments of her peripheral vision pre op and has had some impact to her peripheral vision since, too. However, it is also possible to have no impact on your vision, so talk to the doc about which aspects of your vision appear to be at risk and how likely that is. He or she will want to do the angiogram in order to properly assess that.

In regard to Gamma Knife, the radiation is minimal, being targeted at a small area in your brain. I think you get more radiation from the angiogram or in an embolization treatment, as the X rays are being used to guide the treatment through a much longer time. I wouldn’t expect you to lose your hair at all, though it can happen if you need a lot of radiotherapy. I’m less familiar with GK so will bow to what others can say really.

The gamma knife does take a long time to work but may well be the best treatment for you. Again, take views from your neurosurgeon as to their recommendations and reasons, as the best treatment for you will depend on you and where your AVM is situated.

If you have an angiogram and gamma knife treatment, I would hope you’ll find it very straightforward. Honest.

If you do an angiogram and embolization you’ll spend more time in hospital but I would say it should still be ok to cope with: I had an embo and got through it just fine (it’s always done under general!). I do view surgery (craniotomy) as a major operation. It is very successful and people can have pretty quick time in hospital but I hold the view that it is more of an assault on the brain than the other treatments and therefore recovery can be more protracted. However, this is my view (not that of a doctor) so if a craniotomy becomes the right treatment for you, take your doctor’s view not mine!

Hope this helps. Big ramble! You’re gonna be fine!

Very best wishes

Richard


#32

Charlotte,

Please feel free to PM if you would like more information on what vision loss is like. It may even be a very low risk of vision loss for you but I know that regardless the fear of the unknown is horrible. I can honestly tell you that I think that the fear of losing my vision was alot worse than actually losing that vision. I’m not undermining my experience - ofcourse it is something you want to avoid as much as is possible. However life isn’t half as bad as I thought it would be after vision loss.

I am here to answer any questions however silly they might feel - they are totally valid concerns and I am happy to give you honest answers :slight_smile:

@DickD covers everything else I would have said.

Big hugs,

Corrine


#33

Hi CharlotteLouise, I was super nervous too, had mine a few weeks ago. I asked for sedation but was refused. I didn’t have the option of watching the procedure on camera. I think the dread of what might happen is worse than the actual event. You feel the initial injection in the groin, but after that you don’t feel anything in the groin area. You are lying on your back, your head is put on a headrest and you have to stay super still. They put relaxant in through the IV which made me feel a bit groggy. During the angiogram I felt hot in different parts of my face/neck as the contrast dye was injected. Some of them were very hot. They ask you to close your eyes and I saw lots of beautiful colorful patterns mainly pink. The manual decompression at the end is uncomfortable but not painful. Some opt for Angioseal instead of manual decompression. I’m allergic to a lot of things so was concerned about what they would be injecting into me. However, on the day everything went well. You are advised to have someone with you for the first 24 hrs after the procedure just in case. I had some weird reactions the following day, so I ended up spending about a week in bed, but most people are back to normal within a few days.


#34

Thank you all so much for taking the time to reply to me. I am going to try my best to be brave on the day but if I get myself worked up I will just ask for sedation but I am going to give it my best shot. Thanks again to everybody for answering me x


#35

@CharlotteLouise2992 Hi, no, luckily my avm did not bleed. Your treatment options will be more clear after you had your angiogram. The neuroteam will discuss everything with you, and be sure you have your questions written down and take someone with you to appointments. And you can also always get a second opinion (or more) if you feel you cannot decide based on the information you have. It’s far from easy but my personal experience is now that some time has passed since I heard the diagnosis, things have calmed down somewhat.
-Karin


#36

Charlotte, you are talking to the biggest scardy-cat ever. Please don’t be worried. The feelings are very short-lived and then - boom! they are gone in an instant. Fear is a horrible thing and difficult to control. I had a valium-like substance injected and I didn’t really care much at all to be honest. They asked if I wanted more and I said yes. I am sure the team doing the angiogram have seen everything in their time and know how to deal with it. Just tell them before you go in that you are scared - they have heard that a milliion times too and they know how to make it feel as confortable as possible. You’ll be in good hands. Remember all the times when you were scared in the past and think back how many times it was actually worth worrying about it. I hope that helps. If you want I’ll give you my number and you can ring me, if that will help


#37

:heart: great advice!


#38

Thank you so much @chrisf, I really just want to get in there now and get it over and done with. I am going to see how I am on the day but if I don’t feel like I can do it I will ask for some sedation. Thank you for your advice x


#39

Hi all, I hope everybody is doing okay. Just a quick question for you all… did anybody suffer with vertigo before treatment? X


#40

I had balance issues as my AVM was affecting something pre op 2 years ago. In general, my dizziness is better post op.

About 3 months ago, I had a proper bout of vertigo and really struggled to stand up or walk in a straight line. I find that when I first get up, maybe because it is dark as well, I can swerve round the bedroom first thing.

My GP very kindly attaches it to middle age rather than my AVM. :smiley: