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Hi, I’m Sue and I am very grateful that I found this AVM network. Three years ago I had never even heard of an AVM but I know what it is now. In July 2015 after several months of testing I was diagnosed with a left masticator space diffuse type nidus AVM measuring 1.5 x 3 cm with primary arterial supply from enlarged branches of the left internal maxillary artery (with minor supplemental supply from an enlarged mandibulovidian branch of the left internal carotid artery and venous drainage via the pterygoid plexus into a dilated and tortuous left external jugular vein. There is an associated 3 - 5 mm nidal aneurysm. I worke up early December 2014 with drainage laying in my left ear and on the pillow. Thought it was strange but that seemed to be it. A few weeks after Christmas I got a terrible cold and fever for a few days. When drying my hair with my dryer I noticed this enlarged vein on my left neck. Then the next morning when I woke up I was hearing my heartbeat in my ear. Went to family doctor and he said my ear looked funky inside and put me on antibiotic. Seemed to help the cold but could still see bulge and hear heartbeat. Called my daughter who is an RN and she said to contact a ENT. Got an appointment for about 3 weeks later. They checked things out and saw my neck and listened to my vein or whatever. They did some testing but all came back OK with my ears. They sent me for an ultrasound of my neck. The technician was kind and good but I could tell that she had never seen anything like whatever she was seeing. ENT called with report and said they were sending me for an MRI. Did that and then they set me up with a cardiovascular doctor. Took another month to get in there. The doctor I could tell knew what he was seeing but gave me the impression that he hadn’t seen anything like it in the location mine was in. They took pictures of my face because the left side is slightly different then the right side. Sent me for MRI and MRA. Came back looking like an AVM. Went for an arteriogram in July and that confirmed it. No bleeding into the brain which is what they were concerned about. Doctor basically said since I wasn’t experiencing pain they would leave it alone. I asked what were other options and the response I got was - well we could fill it with cement and things like that. What??? Anyhow I have been going on since then without too much problem. I dropped several pounds intentionally which lowered my BP and I also started exercising regularly to help keep my BP down. Since I lowered my BP the enlarged vein in my neck is not noticeable like it was. My concern is that I believe the doctors that I saw really are not sure what to do or how to proceed. I saw them once since the arteriogram. Yes I feel OK but if something happens I am concerned as to what to do. My AVM is in an extremely rare spot and I don’t know who is out there doctor wise that could help if needed. I live in the eastern part of Pennsylvania but I could travel to get another opinion. I kind of feel like the doctor left me with - well if something happens we will figure it out then attitude. The doctor was nice but about 6 months ago I received a letter from him stating he took a position as head of the department at the hospital so he wouldn’t be handling his cases anymore. I kind of feel like a number and I don’t think they are going to know what to do if that time comes. I am grateful that I don’t have any pain however my teeth are slowly shifting into my other teeth and sometimes I have a little tooth discomfort. I can say that there was not one person in my circle of friends in the community who knew what an AVM was. I have read many of the stories on here and I am so sorry that so many are suffering. You are most definitely in my thoughts. If anyone has any suggestions as to hospitals or doctors that might be able to provide a direction for me that would be great. Thank you so much for listening to my story. Again I am grateful that I found this site.

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Hello and welcome, we are also very happy that you found use, wow, what an experience you’ve had, sounds like crash course AVM 101, you are very knowledgable on your condition and situation, you’ll find no doctors here but lots of shared advise, I know that there are many institutions offering 2nd,3rd opinions, one is barrows neurological institute of pheniox AZ, UCI medical center of Irvine CA, this is a common question on site and I know there are others, just reach out and ask around, once again welcome and best of luck to you, take care,

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I also want to welcome you to the site, its great you’re here. I agree with electrician, you certainly got a course in AVM! I had a bleed and had never heard of an AVM either, now I’m a google educated AVMer.
You’ll see some incredible stories from amazing people on here, I learn something every time I’m here, often about myself and how I can progress, thanks to others. I imagine some other will join in and add a couple more possibilities to electrician’s suggestions of Drs. Take Care, and again thanks for joining us, John

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Welcome to the site! Please get a second opinion ! Many people on here have been told by their first drs not to do anything and they never fill it up with cement…I would fire that dr just for saying that. I believe Barrows you can find them online and I believe they charge 100.00 for a second opinion
You need a doctor who is older who only works on AVMs you are not crazy for thinking you need another opinion.
My doctor is the head of Stanford neuro radiology - Dr Michael Marks and he used medical glue and crushed onyx to build dams for mine and mine is now sealed off. People come from all over the USA and world to see him and he only sees about 12 people a year with the type I have. So you want someone with experience.
No more sounds for me. I still have pain like someone is pulling my hair mine is called a DAVF and its on my left side .
Hugs
Angela

Sue,

Welcome! I completely agree with the others! Wow, you have had a time of it.

I’d add that the minimum you need is a neurosurgeon opinion on your condition. They are the people who, uniformly across this community, seem to recognise what we have and be able to make recommendations as to what to do. Since yours is in your head, the risk you have is a bleed that messes up your brain, like many of us, so a neurosurgeon who can assess how a treatment might be enacted and done safely is the right option. We would all say that a neuro who has good experience of dealing with AVMs is important, too.

“Surgery” is not always the best option, especially in hard to get at spaces, so the neuro should enlist the help of an interventional radiologist if it would be more effectively approached through either embolisation (blocking off, like Angela describes) or through zapping it with gamma radiation, which I assume cauterises it or something like that.

Hope that helps.

Richard

Hi Sue I am in Pennsylvania also. Where are you located?

Sorry I am just replying now. I live in the Poconos in Pennsylvania (Stroudsburg). Any advice on neuosurgeons or doctors you have used in PA would be helpful… Thank you.

I’m seeing doctors at Geisinger in Danville.

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Do you have to stay within the state? If not, Cleveland Clinic, Johns Hopkins, and Massachusetts General are not far from you, and they are world class for neurosurgery. One of the surgeons here in Rochester I believe used to be the director for Geisinger neurosurgery also.