I am scared!

Thank you for letting me post my story. I have had pain in my tooth area. After 3 Root Canals and finally pulling the tooth, it was determined that I had Trigeminal Neuraliga and needed a MRI. The MRI showed I had a very large AVM and an
appointment was needed with the Neurologist. The Neurologists weirdly put me at ease. I am not a candidate for surgery and will have the Gamma Knife. Next week 2/28/17,I go in for a Cerebral Angiogram. I am scared and my family and friends are sending the love, but can not truly understand what I am feeling. I am in the beginning of my journey and take comfort in your posts about your journeys. I found this site and so glad that I did. I am in pain with the nerve and the medicine makes me loopy/tired. I am not complaining, I found the AVM before anything happened. I am just scared!



Welcome to the site! I’m not very much further ahead of you: I discovered mine in April and spent August to November having doctors agree that it was an AVM and what to do about it. That process of confirmation and waiting, mostly September and October were quite scary. For my part, I knew what I had, I just needed to have a proper medical estimate as to how significant a thing it was and what we might do about it.

I hope that as you get through the process of having the angiogram and the doctors can talk to you more confidently about what they are suggesting to do, you’ll be more able to rationalise in your own mind what to do.

Not everyone has treatment for a discovered AVM and there are risks related to leaving it or doing something about it so whatever you decide to do, it needs to be something you are comfortable about. I think it is very much rationalising with yourself.

Let us know how you get on at each stage and we can be here to support you.

Very best wishes,



Thank you so much Richard! I am so fortunate to have this site and people like you supporting me.

Amy I am nine months into my journey and am just now deciding what to do. The cerebral angiogram is not terrible so try not to stress too much about it.

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Its great your here! I’ve had two angiograms, although one I don’t remember as it was while I was in the hospital following my bleed. The second I have full recollection of. I has Gamma knife November 10th, so more than happy to relay my experience if you have any questions. Take Care, John.

Hi Amy:

Welcome to our group! We are here to lend support and encouragement. AVM’s are scary creatures. My best friend has Trigeminal Neuraliga, and her pain is relentless. She suffers terribly, and her doctor’s say she is not a candidate for surgery. My AVM was treated with Gamma Knife in April 2015. In Sept 2016, it appeared to be gone! I pray that your Gamma Knife procedure is also successful. The only side effect I had was a 3-day headache and a numb scalp. As you probably already know, the Gamma Knife does not give you an instant cure. It’s designed as a long term solution, so you will have to be patient. It’s very important to be surrounded by people that love you, and you already have that. They may not understand completely, but they want you to get well. I know you are scared, but know that help is available. I wish you all the best on your AVM journey. Stay positive; try to be strong and Pray!

Sharon D.

Thank you so much for your kind support. I hope I got sleep with the anesthesia. I know I have the best doctors. I am going to MGH in Boston.

Thank you so much Sharon! I am trying not to cry reading these posts.

I continue to pray that this will all be o.k.

Thank you, Amy

Thank you John. I might take you up on your proposition.

Hello Amy, My name is Cody and i found myself in a very similar situation a few years ago. I know exactly how you are feeling. I had my AVM treated with a gamma knife treatment and it worked, it took 2 years but it worked. The angiograms are very unpleasant but very necessary. I had amazing doctors in Toronto plus amazing family and friends that helped me along with my journey. The key is to never lose hope and try your best to stay optimistic, i know it helped me. Keep posting on this site, there are some pretty intense stories people have and always feel free to message me if you have any questions about anything. I dont mind sharing my experience if it helps. Stay strong.
-Cody Thompson


Hi Amy,
Welcome to the site and while I wish that we could all meet under different circumstances, I’m glad to meet you. It’s great that they found your avm and I wish you the best in your treatment and recovery. Any questions you may have, post them and people will respond, I just went through something life changing and posted on here because I needed to vent. It helped and has encouraged me. Best to you

Hey Amy,

I am very new to this all too! It is very confronting and the biggest emotional rollercoaster that I have ever embarked on. My AVM is too large to operate on and I am having my Gamma knife treatment in a few weeks time (I am secretly petrified!!).
In regards to the angiogram they were able to put me to sleep prior to and woke up just after the scans, that was beneficial to me seeing that I am hopeless with needles. Feel free to contact me after the 13/03 and I can tell you about the process.
Hope this helps. Good luck x

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Don’t be afraid of an angiogram, it sounds a lot scarier than it is. Just lie very still and let it happen. Tell the doctor you’re nervous and they’ll put a little something into the drip to help you relax. The worst part is having to lie still for 3 hours after. It’s the most exact way to find out what is wrong and what to do about it. I would do it again in a heartbeat, as it saved my life.

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Hi Amy!

You are not alone!!

I found out about my cerebral AVM about 10 years ago, right after I had a stroke because of it, lol. I was told I would have a very high chance of a re bleed if I did nothing about it. Regular surgery was out - mine is right beside my brainstem and anyone in that far would leave me a vegetable. My family found out about the Gamma Knife surgery, so about 4 months after my stroke I was sitting in the waiting room!

There are some rough parts that you still need to get over - bit rest assured, you WILL get over it all!

If you want any more detailed info about the procedure, feel free to ask! I tend to remember everything I’ve done, and I have an avid Interest in all things medical :stuck_out_tongue:

you and I are lucky for finding the AVM before anything happened. I had my angiorgam as well and the doctor suggested radiation. I did 2 years ago and in my last CT scan 1 month ago the AVM has disappeared. They can only see small activity on the MRI but that’s because MRI is so sensitive and they ask the computer to find something in that location. Good Luck to you and please don’t be afraid. I was afraid as well but the process was so simple and painless.

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Hi Amy. I’m Lulu and I’m in the UK. I also have a large cerebral AVM which is not suitable for surgery. Mine is in my Cerebellum and would be tricky to reach. Since it doesn’t really cause any deficits in my daily life I have chosen not to treat it. I accept that I am in the minority here. But I’m worried about ‘waking a sleeping beast’. Instead I am being monitored for any changes to my AVM and am really hoping that now I’m in my 40s it will never rupture. Best of luck to you.

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Hi Amy,
Reading your story makes me feel I can some how relate it to mine. June last year my Allergist send me for a MRI coz he said my allergies and constant headaches were not related it’s something else. And hence I found out I had an AVM on the border of both the lobes of my brain and its inoperable. That only option left for me was Gamma knife, and so I did not waste any time thinking why me an what’s next I just got it done. Yesterday I had my first MRI and my Neuro Surgeon was delighted to see that the blood supply to my AVM has decreased and that it’s a good start to a long recovery. So I will take it over anything :slight_smile: so relax and just get the Gamma knife done and leave the rest to GOD because HE is the one who put you into this and HE will take you out of it aswell.

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Hi Amy
It is all scary just now but the tests they do are necessary so you get the right treatment for you. Had the cerebral angiogram and yes it was initially scary but the staff were amazing. I was awake but do know that it can be done under general anaesthesia. I have a spinal AVM. Meeting a specialist on Monday 27th Feb so fingers crossed. Just like everyone else on here we have had our own personal journey but happy to answer any questions if I can. X amanda

Hello All, Thank you everyone for the kind words of encouragement. It truly helps! I had the angiogram, not my favorite procedure, but necessary! I am scheduled to see the Proton Radiosurgery Neurologist at the end of the month. The AVM is quite large and the Gamma Knife looks like the way I am headed. I have had time to sit with this information, that I won the lottery and have an AVM. I no longer cry when the wind blows. I am being positive and look forward to a brighter future. Thank you all!


Just a side note…a friend gave me edibles and I had never tried them before, but if I am feeling any anxiety, I just eat one of those suckers and the world is a better place. The key is to stay POSITIVE, whatever that takes.

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