Has anyone had an AVM in the neck?

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21

Hello, thanks for reaching out. Sorry to hear you need a biopsy, I hope you get some definite answers soon.

Are you in the UK too? There doesnt seem to be a great deal of information about neck AVM’s & I dont come across many people with them, so thanks for responding.

How did it come to affect your heart? And can I ask has it grown much in all the years you’ve had this.

Mine sometimes is sore to touch or i experience heavier throbbing and tightness.

I hope you’re doing ok

Thanks

Steph

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22

Thanks @Stephanie20 I hope so too even if it’s hard to imagine it to be something else after 10 years of believing it to be an AVM.

I’m from France and I’m followed by an interventional neuroradiologist here and now by a cardiologist and vascular doctor. From what I understood, my case is pretty rare my echograph left the vascular doctor speechless.

The AVM being a high flow lesion, it makes my heart work too much which is why it’s affected. Also it seems that it takes much of the energy which leave the rest of my body a bit under nourished. It has grown since 2013 but it’s hard to tell how much since the MRI results I had over the years always said it was stable (until now that is since they recognize it has grown since then).

Since it’s located in my neck, turning my head can be difficult, so is some positions to sleep as it hurts when I push on it (it didn’t hurt at all from 2013 till 2025), sometimes I feel a tightness in my chest but I don’t know how much it’s due to the AVM. It’s also big enough to have dislocated my trachea (probably the esophagus too since they are close in a “regular” body) but I don’t have any symptoms related to that yet.

I hope you’re doing alright as well, I know it can be a bit overwhelming at times, you’re not alone :slight_smile:.

Nico

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23

Hi! Long time no see! In the end I won’t have a biopsy just yet. My case will go again in a concerted multidisciplinary meeting before making a decision. Unfortunately, it gives time to my AVM to keep evolving in the meantime

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24

Hi @nico_fr87 how are you?

I’m sorry to hear you are no further forward, i hope you get some answers soon,

I was passed around to different hospitals, and my referrals rejected, seems no-one wanted to deal with me :neutral_face:, its so difficult.

Have you been ok? Im noticing when my blood pressure rises, i am getting a blocked ear which is really close to my avm and sometimes I get hearing loss.. i know they said its stable but surely not if symptoms are progressing.

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25

Hi @Stephanie20 ,

I’m fine for now even if I, more often than I’d like, feel sore on my neck with some pain at times. I still don’t have any news from the hospital but I still have my cardiology appointment scheduled next month. Hopefully, I’ll have more information on the toll my AVM took on my heart.

My AVM being on the lower part of my neck, I don’t have hearing loss symptoms. That sounds terrifying and I hope you’re okay. I’m here if you need to talk :slight_smile:

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26

Hi @Stephanie20 How are you? I hope you’re doing well, I’m finally getting the biopsy done on Friday. I’m going to the hospital tomorrow and they will do it on Friday and I’m coming home on Saturday if everything’s fine. I’m a bit scared since biopsies are not recommended with AVM’s but it needs to be done so yeah… we will see…

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