Cervical Neck AVM and HHT

Types of Avm's Spinal AVM
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Hi @Stephanie20

My story, I also have an inoperable cervical AVM from C1–C5.

I am actually very familiar with cervical/neck AVMs, as I have been living with mine for over 25 years.

Mine started completely out of nowhere with a massive subarachnoid haemorrhage and grand mal seizure. My brain filled with fluid and I had to have a burr hole placed to drain it. I was never expected to survive, but somehow I did. Recovery was extremely difficult and my life was forever changed.

Later I was diagnosed with HHT, which explained all the bright red freckle-like spots over my neck, chest, and left arm — telangiectasias.

For many years afterwards I continued working while dealing with constant neck pain and headaches, which I received Botox for. Against all medical advice and odds, I chose to have a child. It was an incredibly high-risk pregnancy and I had to deliver via caesarean at 36 weeks. There were many moments where it was touch and go for both of us, but I was blessed with a beautiful little girl.

After having her, though, my body began deteriorating.

She is almost 18 now, and I’m grateful I’ve made it this far because doctors never expected I would. But my AVM has now cut off blood flow to two major veins in my neck. I constantly experience electric shock sensations, hear the AVM pulsing/ringing in my ears, and I can barely move my left arm anymore, it’s like a claw with almost no strength. I have no feeling in my right leg to my hip so I often don’t realise when I’ve injured myself.

My body also struggles to heal properly now. My skin tears like tissue paper and my telangiectasias frequently burst and bleed. Walking has become difficult and some mornings I can barely walk at all without holding onto things.

Late last year I had three separate month-long hospital stays while specialists tried to find something they could do. They considered going through my groin to embolise/burn some of the AVM branches, but ultimately decided it was too dangerous. So now I’m left with symptom management.

That’s why I joined this support group. I know my case is considered rare, but I’m hoping others with cervical/neck AVMs may relate to some of what I’m experiencing. Right now I’m struggling a lot physically and emotionally, and it would really help to hear from anyone going through something similar.

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Has anyone had an AVM in the neck?
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Hi Sunnysue,

I have a large basi-cervical AVM that I know of since 2013. At first I had no symptoms at all. Then fast forward to early 2025, it started to hurt when I was sleeping on the AVM side.

All these years after angiographies and MRI, doctors told me the AVM was stable and not worth he risk of doing anything about it. After another MRI in late march 2025, they finally admitted it grew but couldn’t find when it happened (my follow up wasn’t very thorough due to doctors telling me it was stable). After that I had appointments with cardiologists and rare vascular disease specialists to look at my case.

In december, i had a biopsy so they had a sample to work on. While it didn’t lead to a cure, they decided to keep looking by doing genetic analysis on it to find out which gene caused my AVM (they also had doubts about the nature of the malformation due to its (I guess) unusual size). I’m still waiting for news on that side and my case is supposed to be discussed again in a doctors’ meeting after they have the results.

I also hear a constant noise, something like the snow screen on an untuned old TV, sometimes pulsative most often not. The left side of my upper body on the AVM side is slightly bigger than the other and the AVM took quite a toll on my heart already

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Hi Nico

Firstly let me apologize for the delay I’m not well most days and if I am at all I do things for my family.

I read all yours and Stephanie’s messages and my heart broke because I know what you are going through. I have HHT this is where my AVM stems from. I can get them anytime in any part of my body. It comes from my father’s side, my sister also has her struggles. So unfortunately next year my daughter has to be tested for the gene markers for HHT.

I also have the ringing in my ears. The sleeping yes it’s awful. I am about to purchase a pillow that completely encloses my whole body! I have one that makes me sit up, so with that one I should be great as my neck and arm must be secured all night. My right side is also larger than my left (I hate it) however due to the recent blood supply that’s been cut off to my left shoulder and to my hand I can barely use my left side anymore. I can’t lift it up just before my armpit. Whereas previously it was weak but I could still use it now my hank it like a claw. If I do any work my arm swells to 4 times the size and turns purple. As do my feet.

I’m crushed that you are dealing with so very much and still you do not know why. That is so disheartening, also for Stephanie. Did they see if you had HHT do you have a AVM in your heart or is it one of the branches?

My daughter just did her year 12 art on my AVM it was stunning, she used my MRIs and wool for the AVM with paintings and it was called Devestatedly Beautiful. I was just blown away by the art yes and also by how something so pretty can be so lethal.

I’ve lived with this since I was 23. So I know a lot about it. I’m blessed to have one of the top neurologists like a father to me and and uncle who loves his miracle child he helped bring into this world over soo much that almost didn’t. I wouldn’t be here without him.

Unfortunately this is the first time I’ve sought solace or support because it’s weighing on me now. It’s stripping me of who I am and taking my life away. I read posts so I know I’m not alone in the fight.

I will be here for you. Ask anything if I don’t know I’ll ask my professor. If I don’t answer I’m sick. But know I’m here I’m fighting and I’m with you and everyone

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no problem you can reply when you can it’s okay :slight_smile:

I think my case is not as extreme as yours. My body still functions as well as it did before I juste need to be more careful about what I do to avoid high output cardiac failure.
I only have the AVM on the lower left of my neck, nothing else so far. The follow up from the doctors is getting more spaced out in time like before 2025, that’s worrying but it is what it is now. I don’t have kids for now and I’m still waiting to see what mutation I have.

Thanks for the messages and I’m always here too to talk if you need to :slight_smile:

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Hi Nico,

That’s great to hear! I would hate to think you were going through the same things I have. While part of me would like to meet someone who truly understands what it’s like, I’m genuinely so happy that your AVM has not impacted your life to the same extent mine has, and I sincerely hope it stays that way for many years to come.

I hope you stay in the chat and continue moving forward toward everything you want in life. If I was able to have a child despite all the challenges I faced—and there were many—then I truly believe you can achieve the things you dream of as well. Since your AVM is not as severe as mine, there is every reason to believe you can live a long, fulfilling life. Make whatever adjustments you need to, but don’t let it stop you from living life to the fullest. I did despite it.

Never underestimate the power of the mind. Believe me, I know. I’ve survived things that most people should never have to endure, and I learned that our strength often runs far deeper than we realise.

I won’t bore you with the details of my case, but I do look forward to staying in touch and hearing how you’re progressing.

Take care,

Sue

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Sue,

I think your closest friends in here who understand what you’re going through are @Todd1 and @Dave4.

Last time Todd wrote in, his wife was in a mess – just in her late forties but no longer able to have any treatments as the HHT was so widespread that it was affecting pretty much everything. And I think Dave has a facial AVM rather than an HHT diagnosis but he was just constantly bleeding.

I think your HHT is the thing that is driving your rather more systemic issues. You’ll find more friends in the @PulmonaryHeartHHT group, I feel. If you guys start to have a conversation here, I’ll split you out from Stephanie’s situation so you can talk about your own things but for the moment, feel free to chat to whoever turns up.

Lots of love all,

Richard

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Hi Sue,

Yeah I understand. It’s hard to evaluate each case and how it scales in terms of impact in our lives. Still I feel like my case is not as severe as others even if my AVM is considered large by my doctors.

I feel like it’s getting more severe lately but I try to stay positive but yeah I feel like my case is getting less important to the doctors again even if I understand that there’s only that much they can do since surgery is not an option in my case.

I’ll keep in touch and I look forward to hear from you as well.

Take care,

Nico

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Hey Richard
Thank you so very much for that info​:folded_hands: as I’ve never looked into any of this I’m a bit of a lost lamb you could say trying to find my pack lol. As I said I always used denial but I can no longer do that and I find I need to seek out more people like me. I’ve never looked up what I have anything I’ve never wanted to know. All I knew is that it was a timebomb.

I’m so very grateful for everything we have shared and the references you have given me. I would love to get in contact with the them. I would still like to know you are doing well also.

Thk you so very much
Sue

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Sue,

Hopefully, having tagged the guys in the conversation, they might reply. If they do and you get into a conversation, I’ll separate you out to your own space to chat away.

If we get very little conversation, you’ll find a bit of a home with the wider Pulmonary, Heart & HHT team. I’ll try to foster a wider conversation.

I am very well, thank you. My brain dural AV fistula is likely very different from most people here and, so far as I can tell, has been fully resolved just over 9 years ago. All of the other elements of getting older are starting to make their presence known, however!! Other than trying to help people find others to ally with here, my main encouragement in life is to take what we’ve got and make everything we can of it.

Very best wishes,

Richard

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Hi Richard after your message I actually searched for HHT and actually couldn’t find anything current for it the last item was in 2014 so that a bit discouraging. I know it’s rare but I thought that I would find people with it but it was mainly discussing if it was hereditary. I was really hoping to find someone like me. So I may have to seek elsewhere. As I mentioned I’m at a stage where it is quite bad and I find myself needing to reach out to others similar to me although I know I’m a rare case, there must be someone else similar. This is why the doctors love using me as case studies for their interns lol. It’s very weird. But if I help them I don’t mind they are quite fascinated.
I looked up both people you gave me I saw Dave and that but he hasn’t posted since 2022. I sorry I forget about the other one. Brain fog is another lovely thing I deal with!

I’m SO happy to hear you are doing so well and you are not dealing with any really bad issues due to the AVFistula. That’s the best news we could ever ask for. You are also so correct in saying the only thing we can do is live life for now. I always say life is for the memories, so make as many as you can, weather it be with my husband of over 34 years or especially for my daughter. Memories are the precious gift we keep and look back on. I’ve tried to give my daughter so many memories so she will always have a massive collection of who I am. I’m so very lucky I have made it this far. I’m determined to see her turn 21 :crossed_fingers:

Please let me know if you do know of anyone that has HHT with Browns Sequard Syndrome also. Thank you so much again for your kindness and your taking the time to talk and offer your advice and your story I have really enjoyed it.
Sue

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@sunnysue

The people that I’ve found with Brown Sequard Syndrome are @EricaB , @jimmie_d_c and @Michael6

Hopefully you guys can hang together a little.

Best wishes

Richard

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Hello sunnysue!

Reading your story truly touched my heart. I’m so sorry for everything you have been through, but at the same time, I’m amazed by your strength and resilience.

Our stories are actually very similar. I also have a cervical spinal AVM, from C3 to C7. Mine was discovered when I was only six months old after my mother noticed something wasn’t right. Since then, I’ve experienced several bleeds, many embolizations, and a total of 15 surgeries. After one of my bleeds, I lost sensation on the entire right side of my body. I still have strength, but the numbness has remained. I also had to learn how to write, eat, and do everyday things with my left hand because I used to do everything with my right.

In 2021, I had my most dangerous bleed. I was airlifted by helicopter to a larger hospital, underwent a 9-hour awake surgery, and later had a shunt placed because the bleeding affected my brain’s fluid circulation. Like you, my AVM is still considered too risky, and doctors continue to monitor it and search for better treatment options.

Throughout everything, my greatest source of strength has been Allah, along with my family, who never left my side. Reading your story reminded me that we are not alone in this journey.

Thank you for sharing your experience so openly. I truly hope that one day we will both see better treatments—or even a cure—for cervical AVMs. Until then, I pray that Allah gives you strength, peace, and many more beautiful years with your daughter.

You are not alone. I also wish you many happy, healthy, and beautiful years with your daughter and your whole family.