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AVM Survivors Network

Newly AVM diagnosed

#1

I have just been diagnosed with an AVM on the 17th December 2018. After throbbing pain while doing my regular exercise at the gym, which happened four times in a raw I decided to see a neurologist who advised me to have an MRI. Fast forward, I went to see her ( neurologist) who checked my MRI cd and could see that there’s something on the right temporal, she asked if I ever had pain in that area to which I said no. My main headache came from the back of my head close to my neck.
Anyway, she contacted the radiologist who sent the results one hour after… she was thinking it might be a tumor, at this time I was in panicking, crying and barely could understand what she’s talking about.
When the results arrived, she said it’s an AVM but decided to send me to a neurosurgeon to check it up more and get a second opinion.
On Wednesday the 19th December , I saw the neurosurgeon who said it looks pretty much to him as AVM.
On my MRI reports, it states AVM, DVA as well with bleeding spots ? Not confirmed as the report had a question mark ?
The neurosurgeon said it’s pretty sure an AVM as DVA don’t bleed.
He then advised me not to travel as I was about going to London to visit my boyfriend and be with him for Christmas and also meet his family for the first time.
Since that day, the clinic scheduled the angiogram for 8th of January to see more the treatment options.
The neurosurgeon said that embolisation might be the first option which will take two or three depending on the angiogram.
Since I heard the news am devastated and depressed am not eating and it feels hard for me to accept it yet.
Looked on google and also on some people’s battle with it, and it’s so scary.
Am 34 and my boyfriend and I were planning on having a baby soon… now I feel like I should just let him go, as I might not be able to give him what he was hoping .
I don’t sleep at night and feel my headaches are always there and just worry if it’s ruptured.
Sorry for the long post, just needed to talk to people who are in same place as I am .
God bless u all

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#2

Zarah,

It’s great you found us and I am sorry you are going through this, not least at this time of year.

What you’re going through is much the same as many, if not most, of the people who’ve had their diagnosis prior to a stroke. My AVM was on the back of my head, discharging blood into a vein that passes by my ears, so I first heard my AVM (and wondered what it was) a year before I got a diagnosis and a year and a half before I had an embolization.

I see you’ve also found @Bea s post and she holds your doctor in high stead, so it sounds like you’re in great hands.

This time is difficult and scary but actually, even though it sounds like you’ve had a small bleed already, there’s every reason to be positive. We live in an age when AVMs are so much more treatable than ever before, so I hope you’ll be able to have an embolization and put this thing behind you. As I say, I had an embolization about a year and a half after first detecting my AVM. There are other treatment methods that the doc may discuss with you, too.

So… take heart, please. This is not the end of things. With luck, its a stumbling block along the way where you’ll come out the other side a wiser person.

Very best wishes,

Richard

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#3

Thank you so much for your quick reply. Just hearing from you makes me feel in peace.
Also happy to find Bea as she went to same doctor and hospital am referred to. So her help is appreciated.
Thank you so much and God bless you all.

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#4

You’re welcome. I arrived in just as much distress as you. It’s absolutely normal.

Keeping calm, keeping things to do in your mind (rather than this) is good and the best self-help you can do is avoid that gym, stop coffee, chocolate, alcohol, smoking and other stimulants that might put your blood pressure up. Regular exercise is good but nothing strenuous or straining.

If you do have sudden or severe headache, that’s worth dealing with as an emergency. Unless that happens, best to stay calm and a little busy.

Wishing you all the best,

Richard

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#5

Hey Zarah,
For a start welcome to Ben’s Friends and please do not be apologising for your long post. We understand your need to talk to others in a similar position to your own, we all do and that is why we are here.
When it comes to the brain it is all very scary to terrifying. My initial surgery was an emergency situation, so everything sort of happened in a hurry and there was very little time in which to contemplate what was occurring. But my subsequent operations have been planned in advance. For me I found these more difficult to cope with as I had time to think about it all. Our minds tend to lead us down the ‘worst case scenario’ lines and this is never good and although I may make this sound simple and easy I know it is not, but, we need to slow things down and take it all one step at a time. You have seen the neurosurgeon, step one. You have had scans, step two. Your neuro has recommended you have an angio to establish treatment options, step three. There is very little you can do now until you have the angiogram and the surgeon establishes the best course of action.
I can completely understand your thinking in regard to your boyfriend, in fact, I went through exactly the same thing with my then girlfriend at the time (Now wife). I did not feel that it was fair to put her through all of my stress and even gave her the option of breaking our relationship. I thank my lucky stars each and everyday that she did not take that option. I’m in a similar situation to your own in that all of my family are in a different country and this is a time when you need all the support you can get. Trying to do it all on your own is not fair on you. And I believe that your boyfriend should also understand this too. If he truly cares for you, which it sounds like he does, he will stick by you.
Also keeping yourself well sustained is very important. You must eat, do not be putting yourself and your body under further stress. A lack of sustenance is only going to place your body under further stress, so please, eat.

That thing called ‘acceptance’, that is difficult. I had a BIG battle accepting the reality of it all and although I am by no means a religious person, far from it in fact, there is a prayer which assisted me in processing it all. And here it is:-

   God, Grant me the serenity to accept
             the things I cannot change,
        Courage to change the things I can,
        And the wisdom to know the difference.

We cannot change our situation, we have a diagnosis and we have to manage as best we can. We have to have the courage to take the steps needed to deal with it all ie seeing dr’s, having scans etc and you are doing that already. And the wisdom to know the difference, this can be difficult, to say this is a little overwhelming would be a little bit of an understatement to say the least but this is a ‘One step at a time’ process. We can easily become weighed down with the massive amount of stress involved, well, I did anyway, but we cannot make things happen any faster than they already are, a calm and steady approach is far better in the long run.

Look, this is not an easy process to be going through and as I’ve said to members here before “Anybody who tells you this is an easy and simple process has never been here, never been in this situation. So how would they know?” Many of the members here have been in this same situation, our information does not come from a book. It comes from a lived, personal experience and no book can ever give you that. We are here to assist and support each other, so come talk to us if you need, we know this journey because we have been there too.

Merl from the Moderator Support Team.

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#6

Thank you Merl a thousand times for this news, am so grateful to have found this group. My last week has been one of the difficult weeks I’ve ever had in my life. Processing all the information they gave me has ben very hard for me and no one seems to understand around me. They all think well it’s not a tumor, so u will be fine. Also my boss, she advised me straight away not to have embolisation and just to live with it, as someone in her family did the embolisation and than lost all his mobility, speech. I don’t think she was helping as that wasn’t the kind of news I was hoping to hear.
Am taking it step by step as you said. MRI, neurologist, neurosurgeon and now angiogram on 8th January to see exactly what I have. It’ll be performed by one of the best doctors they have in Europe and this is something I didn’t plan , I think it’s just God’s plan to make him from same country am living in, so he was suggested by the neurosurgeon i saw as they work both in same military hospital.
Yes for my boyfriend, I feel like doing as advised now and take it from there, he’s back tomorrow and we will talk about it.
Thank you so much once again for your moral support, I finally managed to sleep without any sleeping tablets.
God bless u all.

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#7

Ohh, that line of 'Well, it’s not cancer…" is a screamer. I want to scream at every idiot that uses that line. That thing called our skull is a sealed unit, there isn’t much room up there for anything else. So when something goes amiss within our skull it doesn’t just affect our brains, it can affect EVERYTHING. Again, I’m often saying ‘Brains are unlike any other part of the body. Break your arm or your leg and 8weeks later and it’s all healed. Something goes amiss with your brain and 8weeks later something is STILL amiss’. The advice from your boss is as helpful as a handful of dirt, great for the garden but of bugger all use for much else. I’ve had numerous people give info/advice/2nd hand knowledge, I have learnt to smile and agree, whilst behind the smile I’m thinking ‘You idiot’. As I say most people have absolutely no clue what it’s like on this side of the equation. And I do not say that lightly.
Prior to my own situation I spent many years working with people with disabilities and, to be honest, thought I knew all about it too. Then my world imploded and boy did I get an education. What I knew prior was all the theory, but now being the one with the disability, ohh hell, I knew very little of the day to day realities of it all. Some people think they are helping by giving advise, but every individual’s situation is different and hearing the line of “…my cousin John, he had one of those and…” can be so very frustrating.
Go have your angio and see what the ‘professionals’ have to say, they are the people to be taking advice from, not ‘Billy from down the local hotel’.
Gentle, gentle with your boyfriend. This will all be scary as hell for him too and best of luck with it all.

Merl from the Moderator Support Team.

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#8

Thank you merl, waiting for my angio the soonest. Am taking it easy and gentle and I feel like living day by day now.
Am scared but trying to lift my spirit up. I wake up everyday thanking god and being grateful to be alive and no rupture.
Thank you for your moral support and the moderator . Means a lot.

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#9

Zarah

I know it’s scary but actually, if you have an embolization, it is just like the angiogram but with the added glue. The only thing you come away with is a tiny, tiny hole in your groin (I mean like 4mm paper cut) a fair bit of bruising around that hole and a decent headache.

The angiogram is done under local anaesthetic and my best doctor talked me through the whole thing. Hot flush coming… now. Feeling of dizziness coming… now. And he was right. The angiogram was fine.

The embolization is the same thing, except injecting glue or coils into the AVM plus, it is a longer operation, so is done under general anaesthetic so you stay comfortable and don’t move. When you wake up, your mouth tastes strange and you breathe out the solvent of the glue. Everyone told me it smelled like popcorn (but it doesn’t taste as nice as popcorn). It just tastes like you’ve been asleep with your mouth open for a couple of days! It’s fine.

Your head has had a bit of an assault by this stage and so is smarting from the glue and the solvent and the contrast, so you have a headache but with good quality drugs such as they have in hospital, it’s fine. Honestly. Then, you’re out in 2-3 days with luck.

Any procedure can have complications, so you need to understand from the doc what he or she feels are your risks and make a judgement as to whether to have an embolization, radiotherapy or a craniotomy, or leave it alone. They should explain all of the options that they think are suitable for you. It’s your choice.

The whole idea of this sort of thing is awful but I tell you, other than a craniotomy (which is undoubtedly a major assault on your brain but is most effective in some circumstances) the other options are ok to cope with. Honest.

Don’t think about the unknown too much. Keep a little occupied with Christmas and New Year holidays and you’ll soon get to some ways forward.

Very best wishes

Richard

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#10

Thank you Richard, wow so glad am here among you ( virtually) you explained it easily. Thanks for that . Am already feeling better today thanks to all of you here. Am trying to keep my mind busy with other stuff especially am a new year born , so hopefully a nicer birthday, than my Christmas alone as everyone was either away or with their families.
I’ll discuss everything with doctor when I see him hopefully before my angiogram on 8th January.
Merry Christmas and happy new year to u all.
May 2019 be a healthy year to all of us.

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#11

Hi Zarah, I had a tonic clonic seizure, at the end of June this year. After all the panic and fear, I’m just trying to rebuild my life. After the angiogram, I was told I have an AVM in my left partial lobe. To make it worse I also have an a Aneurysm on one of the veins leading out of the AVM. My condition is inoperable, my life seemed to hit a brick wall. Being on this sight has been of great help to me and given me hope. Though your just getting used to the news, things can be done and it’s never as bad as it may seem. Give it time, go to the appointments and you will come through this. I wish you well, as I’m sure all the members do. Take care and be strong…
Mick

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#12

Thank you mick, it’s helpful what you wrote to me. Am still absorbing all the news and I think by now am trying to accept it. Some days I wake up ok and others am just crying and scared and depressed. But since I found this site , am getting better and better.
Thank you all for the help and from me I’m wishing a happy new year.

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#13

Hi Zarah:

I’m so glad you found this site. We are a group of AVM-ers who lend support and encouragement. We are here for you whenever you need to vent or need to question something that’s on your mind. In Nov., 2014, I sat down to watch Scandal on TV and a pain hit me like a ton of bricks. The pain was unlike anything I’ve ever felt. I remember telling my husband to call 911. My next memory was about 3 weeks later in the hospital after I came out of the coma. My diagnosis was a ruptured 4cm AVM in the Cerebellum which controls your balance and coordination. I could not walk. I had constant vertigo. My memory was impaired and a whole laundry list of other deficiencies. After that, the real work began. I went through everything you described. I was terrified of everything. I cried, I cussed, and I wondered if I would ever get better. The only treatment available to me was Gamma Knife Radiation due to the location of my AVM. My recovery was slow, but recover, I did! Not a 100% but more than enough for me to re-join my life. The AVM journey is a long one. In time you will learn a lot about the “monster” in your head. You gotta take baby steps. Giant steps are not in the cards. If your boyfriend is the man you think he is, he will take the journey with you and when the time is right, I pray you get to walk down that aisle to marry the man that understands and loves you as you are. Another thing that really helped me then and now is P&P (Prayer & Patience). Remember, we’re here for you. God bless you.

Sharon D…

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#14

Thank you Sharon D. My boyfriend is just back from his Christmas holiday with his family. He doesn’t seem to think it’s a serious thing what I have, but he read some posts here and there and about people’s experience on this website, and now he realizes better.
Am taking baby steps for now and trying not to think much about it . Waiting for my angiogram and I’ll take it from there.
I’ll keep you all posted about my case and am sure I’ll get back here for more advises.
Wishing you a happy and healthy new year.

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#15

Just to let you know, my AVM discovery, surgery, and gamma knife all happened 29 years ago. My wife not only took care of me through all of that stuff, but also had three children. They’re all grown up now and much smarter than dad, which is to be expected. During these 29 years, I’ve also worked as a chemist. While it’s not always been perfect, it has been a good time. Just to let you know, there is hope after the operations. Take care.

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#16

Hello Zarah, I know the fear of the unknown all too well. I had 3 AVM’s discovered in 2017. Took a year to get two of the 3 fixed, but I’m alive and doing well after 4 embolizations, 6 brain angiograms, a styloidectomy/decompression of my jugular vein and a craniotomy. My 3rd AVM is encapsulated in bone , but not using a brain vein to drain at this time so it’s just being watched. I know how scary this is, but it does get better! Hang in there! It’s not a real common condition, so having this site helped me cope knowing I’m not alone. Reach out any time with your fears or concerns-we’re here to help!

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#17

Dear Zarah,
I was diagnosed with a large AVM on my right frontal lobe January 18th of 2013. So much of what you said was exactly what I went through. I was told that the right frontal lobe was the best place to have an AVM for surgery, if you had to have one. Mine was too larger for any treatments. The neurosurgeon recommended surgery. I had two embolization procedures before my surgery. The main thing is to stay as calm as possible. I know it is a very difficult thing to do when it is so scary. I had surgery to remove my AVM in February. Afterwards you have to take it easy, no lifting, tugging, pulling or exertion for awhile, until you recover.

We are all here for you to lean on. My advise would be, don’t think too far ahead. Take one step at a time. Ask the doctors any questions you have. Hang in there. We are all cheering you on to recovery.

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#18

Thank you so much for all your help. It helps a lot receiving all these messages. Am taking it one step at a time . I’ll keep you all posted about my angiogram

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#19

Hi Zarah, Reading your story brought back some memories for me… Like you I was having headaches after the gym and after a week went to a doctor and had a CT scan which confirmed I had an AVM.

This happened to me on 23 December 2010 just before Christmas and I had a terrible Christmas and New Year period as I was so down also, so I can definately relate… I also had my AVM in the front right similar to you also and had it removed with surgery in February 2011.

I was very down but did not give up on things and tried to stay positive… I was 30 years old at the time and i believe you are young, strong and healthy to get past this tough time in your life… I know it sucks but there is light at the end of the tunnel as you can see many stories here from survivors, which I believe you will one day be adding to also with your success story for new members.

Please try and stay positive and it would be safe to say you would rather the AVM than a tumor so that is one major positive outcome in your scenario already… We cant stop living life and if your boyfriend loves you, which I dont doubt, I know he will be there for you no matter what… My wife was there for me after this happended to us 4 months after we got married and was really hard but we got through it… please keep us posted and we are here for you… God bless!

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#20

Hi Zarah I’m a long term survivor 40 years in 2019. I had my haemorrhage in 1979. It wasn’t treated as there was no treatment then. I didn’t have it treated until 20 years later when I had gamma knife treatment but during that 20 years I had 2 sons by c section so it is possible for us. I left hospital without any info or support. This website is a mine of useful information and support. Good luck to you on your AVM journey.

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