After my angiogram i have been diagnosed with AVM in the neck.
My neurologist isnt sure if it will be best to leave it alone or treat it with radiation and wants to wait to speak to a particular neurosurgeon about this.
He said one of the artery’s involved will be the reason for my eyesight deteriorating, dizzy spells and my co-ordination been affected which he suggested possibly coiling that one. He also said there maybe an issue with one of the veins drainage, and that the problem with my AVM is that there is so many blood vessels involved.
He reassured me he did not think there was a significant threat, and if it was to bleed it would be outside of my brain.
I have not came across anyone with a neck AVM so i was hoping for some honest advice.
I dont feel great with potentially leaving this alone and having to live with it.
So sorry to hear about your diagnosis. I was also diagnosed with an inoperable spinal AVM in my neck at the base of my brain stem (I posted about it here). It’s scary to consider the treatment options (or lack thereof), and the risk of a bleed occurring over time.
Where in your neck is it located? Depending on the location, it can be pretty risky to treat them since there are key vessels/nerves passing through such a relatively small space. If you haven’t pursued a second opinion yet, I’d recommend doing so for comparing advice and if nothing else, peace of mind with your decision. The Barrow Institute (US) provides a very cost-effective option and has a fantastic team. Feel free to ask any questions in this thread or DM; I’m happy to help as best I can.
Sorry to hear about your diagnosis…it is not an easy journey! I was diagnosed with an AVF in my neck (base of skull to C7) in July 2023. Apparently my right vertebral artery was 2-3 times the size it should have been…ended up having a spinal dural embolization procedure done (after MRI and spinal angiogram were conducted to see if it could be treated). From what I understand I was incredibly lucky that the surgery was able to happen…and that it was successful. There was real risk of becoming a quadriplegic but from what I understand I was well on my way to becoming completely paralyzed anyway. It was a tough procedure to go through - 14 platinum coils were used to shut down the AVF…long slow recovery but all in all going well. I am physically active with just a bit of weakness in my right arm/shoulder. 1.5 years post embolization and I’m starting to get some tingling/pins and needle type sensations in my arms and legs. Thinking it might be a good idea to have another followup MRI to check on everything. But a part of me is dreading opening that door again for fear of needing further work. I pray that medical advancements continue to the point where one day AVMs/AVFs might be easier to diagnose and cure. It is such a tough condition to live with - even after embolization treatment. The resulting anxiety has been almost worse than some of the actual symptoms. Thankful for support groups such as this…makes one feel not so completely alone! Praying that you find a treatment or solution that gives you peace, hope and ideally healing.
Thank you all for your advice & guidance.
I am sorry to hear about your cases & hope you are doing ok.
My results were discussed today and I have been told that the risk of operating outweighs any gain.
They also dont think any of my symptoms (headaches, eyesight, co ordination been off) is related to my AVM. The only symptom related is the pulsatile tinnitus.
They said the chances of it rupturing are low and if it was to bleed it would be outside of my brain & did not seem too concerned about me.
Honestly, if they view the risks of intervention as higher than leave it alone, then that is a sensible answer.
I would say a couple of things:
You could get a second opinion.
I’d ask if they’ll scan you from time to time – maybe every 2-5 years, or if you get additional symptoms from it, go and get it looked at again.
In regard to a second opinion, you might even send your scans, etc to one of the major neurosurgery practices of the United States. Healthcare in the US is “private” and possibly the most expensive place in the first world to get treatment but the major practices will offer a “remote” second opinion for something like $100-$400. So if you’d like some corroboration, that would be a way to go. We also have a member, @Indalo, who went to Germany to seek a second opinion.
As far as keeping an eye on it is concerned, we had one other neck AVM member who often comes to my mind, @TJ127. Unfortunately he passed away a couple of summers ago aged about 54 from a condition unallied to his AVM but he had a large upper chest / neck AVM that was treated something like 17 or 18 times over his lifetime. Part of the reason he sought treatment in recent years (I think tail end of 2017 / early 2018 in particular) was because he was getting some additional symptoms and a scan revealed that his AVM was starting to make its way up his spine into his cerebellum. So keep a bit of an eye on it from time to time.
I’m happy to help you find some of Tom’s story. It’s a long story (by which I mean this is a good thing) and he was generally well, returned to work after each of his operations, until the one in early 2018. However, what we learned in his passing was that there was another issue going on that was clearly affecting him even more than his AVM. I think the trouble is when we have something like this, we focus on it, and it’s not always the only thing going on.
I hope these ideas help a bit. However we can help you be the survivor that you are, just say!
If you go for a remote second opinion, maybe go to Mayo Neurosurgery in Rochester, Minnesota, USA. Only because Dr Lanzino and another there looked after Tom in his recent years.
You’ll be different from Tom but you’re a bit unique and having someone who has seen something similar could be really helpful.
Hi Stephanie , Sorry to hear your story , my wife has an AVM at C3-C4 it ruptured in 1981 she had multiple embolizations over the years although she has left side paralysis, she has managed to live a great life, she is 55. She recently has had surgery to fuse the neck vertebrae that were damaged by radiation given to her in 1981. She is slowly recovering in acute rehab center currently, the AVM has show increased in size but it is inoperable now and we just take every day we can get , things should get better in next couple months when her neck is more stable. She has always seen the Doctors in Philadelphia at University of Penn Neurosurgery more recently Dr. Burkhardt he is the top neuro Dr in Phila. Even Philadelphia only sees 2-3 cases a year of AVM in cervical column. We wish you the best.
Ken
Thank you for sharing your advice and experiences, so thankful this group.
I am going to follow up on Dicks advice and get a second opinion for my own piece of mind.
HMG i am sending love and prayers that you will be ok, the anxiety is the worst for me too. I was told my arteries are alot thicker on the side my AVM is so that sounds similar. There is too many blood vessels involved that if he was to coil and likely did not shut the whole thing down, then the AVM would recruit more vessels and essentially put me at higher risk. As currently my AVM is large, but stable and “low risk”
In my neurologists words “they dont want to kick the hornets nest”.
Ive since been referred to Vascular to see if they can do anything regarding my pulsatile tinnitus.
I just cant get my head around the thought of having to live with this thing, but i suppose I am going to have to get used to it. I just cant see things getting any easier…
Hi Stephanie , my spouse too has complained about ringing of ears for years, I thought it was from having Covid, but that makes sense it would come from AVM, try to enjoy this holiday and New Year, and take it day by day and year by year , my spouse has had hers for a very long time and we have a daughter your age. You have support here if you ever need to talk.
Yes they said the pulsatile tinnitus was the only symptom of mine linked to the AVM, despite gettimt daily headaches/ migraines, and vision been off etc
I hope your partner has been managing ok, sending love & best wishes for 2025🙏🏼
Sorry you are going through this Stephanie! My 32 year old daughter had a spinal AVM from C2-C7 and had it treated with gamma knife 4 years ago at Stanford Medicine. It is 97% obliterated and she is living life! I would definitely recommend sending your records to Stanford and Barrows and get their thoughts. We feel so grateful we found Stanford!
All the best to you on your journey. Stay strong!
Beth Carter
Sorry to hear about your daughter Beth that sounds really similar to my case, so thanks for taking the time to message me its really reassuring to know Gamma has worked, & great to hear she is happy and living her life.
I am 35 and in the UK. I had my angiogram in November currently waiting to be sent to a Dr who knows what to do with me, as there has been alot of passing me around and refused referrals which has been time consuming for moving forward. I am hoping I can eventually be sent to Sheffield for Gamma Knife.
Can I ask did she suffer any side effects from the treatment?
Hi Stephanie,
She had some intermittent pain after the treatment…it was a little scary because we didn’t know if she was having another bleed, or if it was inflammation from the radiation. She had a steroid dose pack prescribed a couple times to manage it, and it ended up being brief…so overall we feel very blessed and lucky. She suffered several bleeds, and was told there was nothing anyone could do. When we found the docs at Stanford who could treat her, and did so successfully, we were beyond happy! It’s all so scary though, because it is so rare, and each case is so unique. Please reach out if you have any questions at any time! I valued the support o found here so much!
All the best on your journey!
Beth
Even though you’re in the UK, if you obtain your records, images, etc., you’d be able to send them to Barrow Neurological Institute in Phoenix, Arizona through their “remote second opinion program” portal for about $100.
While I’ve been enthusiastic about neurosurgery practices in the UK to others, a spinal AVM does seem to me to be rarer, so having multiple opinions may help you to be confident in what you’re told. And it does seem very unhelpful if you’ve been handed round rather. That does seem like the teams who’ve seen your reports are less confident in the route forwards, or at least their own direct experience in a spinal AVM like yours. I’d consider it, just for a second opinion at this time.
Just thought I’d share that idea, though I’ve just noticed I’m repeating myself
Tonight’s thought. I’m lying in bed thinking about @moonglow500, @Stephanie20 and @TJ127. Tonight’s thought is, if your doctors, Stephanie, are finding you to be a bit unique, talk to them about Tom and maybe get them to conference with Giuseppe Lanzino about his patient Tom Vanderwell. I linked Tom’s obituary in my first reply to you. I think his dob was 27 Jan 1965. Maybe see if your docs will consult with Dr Lanzino.
Thanks all, I really appreciate all of your support.
My update from neurologist- “ At our MDT and we have rediscussed the case with our neurosurgical colleagues. The consensus from neurosurgery is that given the size of this arteriovenous malformation, surgery would be difficult and would likely involve removing a significant amount of musculature from the back of the patient’s neck which would entail a significant amount of morbidity.
There is also a risk that if the AVM is not removed in its entirety it may evolve and recruit some further blood vessel supply from within the skull and therefore become a high risk AVM. As such, the neurosurgical team would not advise any surgical intervention at present”
Therefore I have been told to live my life as normal, I expressed my concerns for having young children and the risks of a rupture considering the size of my AVM, which I have been told chances of this happening are really low and if/ when that happens they would treat it then.
So im left feeling abit lost, I feel extremely grateful that I have a low risk AVM, as I know theres many people on here who are in far worse situations than me, but also struggling to adjust to this been normal as it does feel like i have a ticking time bomb. I have pulsatile tinnitus and my avm has really strong pulse due to the area its in and the arteries involved which puts me on edge when I can feel it throbbing as i try to sleep.. its not the end of the world but always a reminder that its there.
Thanks Dick for providing me with some great advice, I am looking to get a 2nd opinion at Mayo where you have suggested, however all my images are on a IDV app which is quite complicated (for me anyways) so i just need to work out how to change the format etc to be able to send them over.
Apart from that I guess i will just have to get on with things as normal as I can.
