Hi, I am new to the group. I started having whooshing sound in my left ear a few months ago so my doctor ordered a CT scan, MRI & MRA of the head/neck. I was referred to a neurosurgeon & had the cerebral angiogram done last week. It revealed a 3 cm AVM in the hypoglossal canal area. Anyone else have an AVM in this area & what did you do for treatment. Also, the angiogram catheter was done through the groin. Now on day 5 I have extensive bruising (red and dark) down my thigh near my knee. Has anyone else experienced this?
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Hi! Welcome to AVM Survivors! It’s great that you found us!
There are two people I know who have an AVM in this area.
The most important is @srmid s husband and the National Hospital for Neurology & Neurosurgery in London proposed to treat him percutaneously (i.e. directly through the skin and by virtue of the hypoglossal canal being an aperture, through that gap in the occipital bone. It’s the only time I’ve read of anyone approaching a brain AVM in this way but then there aren’t usually so many obvious access routes as this when you’re dealing with a brain AVM. I hope they will let us know how they got on.
The other is a gentleman who lived in Michigan but who passed away a few years ago from a condition separate from his AVM(s). He had a very large neck and upper chest AVM that started to creep up his neck in about 2017 and cause him trouble with his hypoglossal nerve on the left side. He had something like 18 or 19 catheter embolization procedures at Mayo (Rochester, MN perhaps) but his was a very extensive AVM or AVMs: I wouldn’t use him as someone to compare yourself with too quickly.
Let us know any way in which we can help you through the trauma of all of this: it is quite a frightening time but with understanding, some fellowship and a bit of time, I hope we can help you to a rather calmer situation than I was in when I was at a similar stage ten years ago.
Welcome!
Richard
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Thank you so much for the welcome and for the information! I’m glad I found this site. This is all so new to me and so stressful. It sounds like this condition is a rare one. My CT scan also showed some bone deterioration around that same area so wondering if the AVM could be causing that as well.
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Thank you for remembering my husband. He is doing well so far and I hope it stays that way for a good few decades.
The procedure was through the groin and through to the AVM - completed in 2 attempts as it was a rather complex network. If i recall it was glue rather than a coil.
The clinicians at London Neurology hospital were excellent. Both procedures were done by different neuroradiologists. Happy to share the names - I will have to dig them out from my files.
There was red bruising at the groin and appeared minor considering they went in 4 times. It certainly did not extend to the knee. I would get that bruise looked at.
Wishing you the very best
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Thank you so much. I’m so glad your husband is doing well. I will get the bruise checked out. I’m glad I found this support group.
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Oh, so he had catheter embolizations with glue rather than a percutaneous approach, eventually. I think a decent amount of bruising with an embolization is normal. I had a single embolization and then two follow up angiograms and certainly the embolization provoked a decent amount of bruising.
Great to know hubby is doing nicely. My embolization was just over 9 years ago now and I think it’s fair to say I’ve relaxed back into normal life for quite a long time! Equally, I think for me a lot of the fear was the fear of the unknown. Having gone through my embolization procedure, if the doc said to me that we need to do it again, I’m sure I would be more relaxed about it than I was originally.
Very best wishes,
Richard
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Hi,
So sorry to hear of your findings. I had a right parietal AVM. My doctor performed cerebral embolizations and eventually a craniotomy to obliterate the AVM. Please ask your doctor and/or research cerebral embolizations. I did experience the bruising (in my groin and to mid thigh). I went to the hospital immediately when I forst noticed it… it turned out to be a hematoma. I hope you have reported this to your doctor, seek immediate attention. Good luck!
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Hi
I believe all my angiograms were done via the groin and under GA.
It’s over 30 years ago so yes there was always bruising but I think the amount mainly depends on who did it. If the trainee was new then I got more and it was painful for a few days.
Hope it all works out
Tim
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Thank you for the information. I will definitely ask my Dr. about both the bruising and the cerebral embolization.
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Thank you so much for the information!
Hi, I had davf in brain 2021. Had embolosation through groin, glue and coils. Had it done in UK.
Sadly it did not work, 3 months later, craniotomy and surgical removal, behind right ear.
2 more ops through groin, yes lots of bruising.
But 5 years on, am ok. As I read elsewhere, its the fear of the unknown that gets to you. Well it did me, lots of recoveey time. Foolishly, I returned to my stressful job. All symptoms returned. Convinced it was returning, i turned and run.
Am ok now, found out that workimg in a noisy/busy place like a school is not conducive for a stress free existance.
Take your etime, rely on groups like this for support/reassurance of what is happening. Listen to your body, talk, dont bottle things up alone.
Good luck on your journey.
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Thank you! It is good to know that the bruising isn’t abnormal. I am glad to hear you are well now. I did switch jobs to a much more stressful career a few years ago so I wonder if that brought on the awareness of the pulsatile tinnitus and the AVM got more aggressive or something. I’m 59 and never knew I had this. Of course I had a low stress but more physical job for most of my life. I am still waiting on the Drs to decide how and whether to treat this. Thanks for the advice and I will take is as easy as I can. Sounds like I need to start planning retirement!
Hi Fisherman
Im 64 now, from UK.
I had stressful middle management jobs most of working life.
The davf (where an artery and vein join), blood flowing from pressurised artery into a vein that cant take pressure. Eventually caused bleed on the brain.
We all have different fears during our own journey. I wish you well. 1 day at a time.
I cant tell you how to deal with it, we all different.
I dont know where in the world you are.
But I did some research into my own illness. Of a population of approx 67 million people, only 100/150 cases a year. Quite rare.
Good luck to all as we fight this. Some people it changes everything, others roll with the punches.
Any worries, no matter how small, ask you Dr.
Take care.
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Thank you for replying. That’s great advice. I need to take it one day at a time. I’m in the United States. It’s scary to me because it’s so rare and around the brain. I’m so happy to find this site because it helps to talk to others that are going through or have been through the same thing.
I think on this website we have got at least 6000 people who have gone through having a brain AVM. Many of those people have moved on, got on with their life since visiting here just as worried as you are, as I was, but through the power of the Internet, even though this is a rare condition, we have a very large number of people here who’ve been through the same or similar.
A DAVF appears to be rarer and it seems to be discovered in older folk – I’m a DAVF patient – and there’s at least a theory that they may be acquired rather than congenital. A regular brain AVM is thought more often to be congenital (i.e. part of our random makeup when we were formed in the womb). But even if you’re a DAVF patient, we’ve got a few dozen people here who we can turn to.
So there’s no need to feel alone in this or scared of rarity. There are a handful among us who are very very rare but hopefully we can all stand together for those folk.
Feel free to ask about anything that’s bothering you. Many of us have been through what you’re doing. Just ask.
Very best wishes,
Richard
Yes, I know this site and the community are going to be a source of information and comfort for me. I am thankful to have discovered it and I have already spent a few hours reading about great results. Until the Dr. gets back with me I don’t know what to ask. The medical notes are full of long and lengthy words that I will sit down and look up so I have a better understanding of what exactly they found. I also find great comfort in prayer so I have been doing a lot of that. Thanks so much again.
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