Hello. I am 66 years old. I had an MRI last Wednesday, which shockingly revealed a high-flow AVM centered in the right parietal lobe with a nidus of 3.7 cm. There is no grading mentioned. It is draining into the superior sagittal sinus and lesser extent right transverse sinus. I had a CT in January that revealed more rare anomalies: Sphenoid sinusitis and bilateral jugular diverticulum.
I had the CT and MRI because I have had problems with ear fullness and mild-to-moderate mixed hearing loss in my left ear. I certainly did not expect to hear all this when we were just trying to figure out what is causing my hearing loss and tinnitus.
I had migraines from around the age of 20 and also have been plagued with other headaches and sinus problems. The migraines stopped during menopause, so I always thought they were hormonal. Perhaps not.
I have not found a neurosurgeon yet. I have one I want to call. I am in Georgia. He has AVM experience, but I don’t know how much. Same for the others on my list. I called Mayo in Jacksonville, and as of this year, they no longer accept Medicare Advantage plans, which is what I have. So I am out of luck there. I see the University of Florida in Jacksonville has a few neurosurgeons who are listed as having AVM experience, so if my first guy doesn’t work out, I have others to look into
Yep. A bit freaked out. I’m reading that the percentage of ruptures is pretty small, and that’s great. But just knowing this is in my head now is scary. I am sure an angiogram is next on the list.
I am also Factor V Leiden, which puts me at a greater risk of blood clots. I am sure that isn’t a good thing with this.
Glad I found a group because there is virtually nobody I know who has experienced this in any way, shape, or form. We have lost family members (not blood relatives) to stroke, so that is not helping my anxiety level. I’m also under a lot of stress with two very difficult family issues.
Thanks. Just wanted to come on and introduce myself.
Judy, welcome to the club that none of us knew existed! It’s great to have you join us!
A neurosurgeon is exactly the person you need and it’s disappointing that Mayo Jacksonville don’t accept your plan because we have definitely had folk go to Jacksonville. You’re absolutely right about getting someone who is completely on top of AVMs.
My AVM was discharging into my right transverse sinus but appeared to be a straight shunt (no nidus that I ever saw on a scan) but was closed off by way of an endovascular catheter embolization using PHIL glue (PHIL = precipitating hydrophobic injectable liquid). I came away from the op with quite a headache but about a 6mm cut in my groin where the catheter went in. Quite remarkable! The other modes of treatment are the more obvious craniotomy (sometimes with one or more embolizations) or radiotherapy. So not everything is the lid off and rummage around kind of thing. I’d say that whoever you see, ask about the efficacy and relevance of the different approaches for your situation, including the Factor V complication. Probably only one or two approaches will be appropriate for you.
I’m in the UK, so I can’t help you with insurance questions. Over here, health care is essentially free but as a consequence it is limited by resource, so it took me 8 months from formal diagnosis to embolization. It was a worrying time but there are things you can do to reduce your risk. I felt my AVM was changing over time, not least because I could hear the rough flow from the pulse of the blood coming into the transverse sinus. In my case, it was strong enough to flow both ways, past both ears and my symptoms increased over those months. I had first heard my AVM (specifically diagnosed as a Dural Arteriovenous Fistula) about 10-11 months prior to the formal diagnosis and it was hearing the noise or “bruit” that had led me to investigate and seek a doctor about it.
Welcome! I hope we can help you a little on your way! I should say that my experiences date back 8 years now. 8 years ago today I was still panicking about getting worse, getting dizzier as time went on before having my op in the April, and the point is I’m still here, doing great.
Thank you so much for your reply and the hope it brings to me.
Mayo was a huge disappointment. It was the first place I thought of. So today I begin making calls to the neurosurgeons I have on my list.
You say there are things I can do to lower my risk while this is all shaking out. I have searched, but all I find is no straining and no heavy exercise. Kinda vague if you ask me.
What things can I be doing now to help myself?
This is a weird place to be — scared about what’s in my head and also aware that this has more than likely been there since I was formed many years ago.
I’d say once you find some places you’re thinking of visiting, have a search through here for people who’ve been there. We don’t allow negative reviews of doctors or institutions because that might require us to admit their representatives to ensure “balance”. We want this place to be a peer-to-peer support forum not some kind of sales forum so negative reviews are not allowed but hopefully you’ll find the positive ones that help you choose.
With regard to self-help, there is the stuff you’ve already found about not straining, avoiding things that spike your blood pressure perhaps: coffee, alcohol, smoking etc. I cut out my favourites of coffee and chocolate and for about a month, it felt amazing but I felt my DAVF was developing quickly and so I regressed to where I had been within that month.
The other things I found that helped me just cope with the situation were things like being open with those people around me that I had an increased stroke risk: that if they found me inspecting the carpet in the middle of the office to consider that a stroke could be at the root of it and to call an ambulance. There’s no value in pride at a time like this. Now is not a time to be reserved. I also put my wife’s contact details into the emergency section of my phone and I bought a couple of medical wristbands: a bright red one for the days when I wanted to have conversations with people about safety and a navy blue one for those days I wanted the wristband but was less sure of wanting to actively have conversations with people. Those worked nicely for my peace of mind and it was interesting who would actually ask me about them. They did provoke questions from some people.
So even though it feels very isolating perhaps, very scary, there are small things you can do to help you along the way. (I’ve got other ideas too).
The other thing I’ll say at this point is that I found this place really helpful about 50% of the time, as I read encouraging stories, and really unhelpful about 50% of the time as I found examples of people going through the more difficult stuff. So it’s true: it’s a hard place to be but my objective is to try to carry you through slightly, that we might walk with you a little along the way and help not hinder you in any way. If at any point you find it unhelpful, take a break. The only point of this place is to try to help a little.
I am a very proactive person. I have already FaceTimed my family members, explained what is going on, and gave them what little education I have at this point to hopefully help settle some of their fear. I felt fave-to-face was best, and thankfully, we have that technology.
I have also texted back and forth with a core group of my close friends so they are aware.
My MedicAlert bracelet will be here today. I love the idea of red and blue. I may have to order another one.
I am looking at Dr. William Humphries with the Wellstar group in Marietta, Georgia for a neurosurgeon, although I am just not sure how many of these he has done. I have to start somewhere though.
I totally understand the 50/50 reference and appreciate it.
I’m writing to give you an alternative place to consider when assessing how best to decide on treatment.
You have my deep sympathies with your diagnosis - I went through the same thing five years ago when I was told that I had aneurysms plus an AVM and I know how traumatic it can be. Due to the location of my AVM I was eventually advised to have it treated “conservatively”, which meant that at the age of 70 the risk of an operation plus possible follow-on side effects from radiation treatment was considered to be greater than the risk of any burst, so I’ve just had periodic MRIs. In retrospect, that was completely the right thing for me. I was lucky to find a good team in Orlando, close to where I live, and they did/do take Medicare Advantage!
The alternative place that I’ve considered for a second opinion (from time to time when I’ve have other neurological issues) is The Barrow Neurological Institute. I have no personal experience and although they are some distance away from you in Arizona they do seem to have a highly respected reputation from what I can see. Searching this Forum will provide more perspective. Interestingly they have a Second Opinion scheme for a flat fee of just $100 which can be accessed remotely if you can get hold of your medical records and send them over to them. Maybe others on this forum can comment? It may not work for you but please give it a look.
Anyway, they can be found at https://www.barrowneuro.org/ and there is a link on the home page to “Get A Second Opinion”.
I hope that you are successful in your treatment and the very best of wishes for the future.
Colin: Thank you so very much for your input. I am aware of Barrow. They are on my list to check into should the need arise.
I have a feeling that they are going to want to treat conservatively with a wait and see approach as well at my age. But we shall see. The good thing is that the chance of rupture at this point is fairly low, but the whole idea of learning to live with a bomb in your head that could go off, even if it is a small chance, is really scary. After all, the chance of having a brain AVM to begin with was even less than the chance of rupture at this point.
I have thought of Barrow’s second opinion option as well if it is needed.
I would like to ask what restrictions have been placed on you in this conservative approach.
Thank you again. I am so sorry for your diagnosis as well. This is not for the faint of heart.
The advice that I was given was to just “live your life normally”. “Conservative” to my medical team means no surgery, just monitoring at intervals to make sure nothing has changed plus the advice that all doctors give these days e.g. sensible diet, moderate alcohol, minimize stress, and so on. I’ve had MRI scans at six months, twelve months and two years after having had the aneurysm treatment and my next one is in three years. I check my blood pressure regularly but I’m encouraged to still make regular gym visits for moderate aerobic and strength training work - other than that, I know that I’m less energetic due to the normal effects of ageing but that is the only thing that restricts me. The AVM has receded so that I’m hardly ever conscious of it and I hope that you get there too.
I fully recognize your comments about “a bomb in your head” and “scary” - that’s exactly how I felt. I went through most of the standard stages of grief, maybe with the exception of denial. I certainly had anger and depression. I was impatient to fix things (bargaining?) and I was all set to race ahead with AVM radiology after aneurysm treatment until Covid stopped everything in Florida for just a few weeks. The stoppage produced even more stress and anger. I had given too little thought to questioning any possible radiology side effects but the hold-up gave the medical team a chance to re-assess and they then recommended the conservative approach. Only at that point did I calm down and that’s when acceptance came. I’m now at a stage where I’m grateful to have come through it and I believe that I was very fortunate in how it all turned out.
To echo Richard in his first reply to you, "I’m still here, doing great " also, so you know that it is possible. Perhaps this helps if only a little.
It helps a lot actually. A large part of me keeps saying that I’ve lived 66 years with this thing apparently, so there isn’t anything different other than the fact that I now know about it and whatever else is going on in my head/face/ears.
I’ve gotten away from exercise this past year and was hoping to get back to it. I am very out of shape there, but I will wait until my neuro consult to get their recommendations for safe exercise options.
Stress? That’s a different story. This diagnosis came at the highest stress point in my life. My son-in-law died by suicide six months ago. My daughter already had mental health problems, and on top of my own huge grief – I am worried about her. Then my son decided that he never wants to speak to me again this past December. He has battled alcohol for 22 years. I began having panic attacks. And now this lovely diagnosis.
So it has been a lot on me for sure. I am working hard to keep myself as calm as possible in all this, but it’s an awful lot to handle at one time. I’ve pretty much shut down the last few weeks to just sit and be, get back into some artistic endeavors (therapy for me), and calm myself down from the constant onslaught of “stuff”.
Knowing that people are “still here, doing great” helps a lot. Thankfully, I only have two weeks and two days before I see a neurologist. I’m really hoping I feel secure with this team so I don’t have to play the “chase the doctor” game. And I have this group here now, too. I also have a wonderful personal support group with friends and remaining family.
So in it all, there is still much for which to be thankful. And I am. Every day. The days are just a little bit sadder and more uncertain lately.
Again, thank you so much for your input. It really is helping me.
I am sorry to hear about your new diagnosis but I am happy that you have found this support forum. I am in a bit of different situation as you - my 10 year old son was diagnosed with an AVM last year incidentally after a concussion. But I can relate to the uncomfortable feelings of being suddenly thrust into a new reality with the uncertainty of what the future holds. I will say that reading experiences here has been a huge help for me while navigating this diagnosis for my son and I hope that it will be for you as well.
I did reach out to Barrow for a second opinion and it was an easy process with a quick turnaround. So if you get in a position of needing to reach out to them and have any questions I would be happy to help. I will say if you can to get your images of all diagnostic tests on a CD from the hospital in case you decide to get the second opinion. It will make it easier if you can upload them directly on the portal.
I hope you find a great team of providers and best wishes to you!
Hi Judy,
I read your message and thought I could share some of my experiences and perhaps this could be helpful to you. When I was 60 years old, I had a cerebral hemmorage which caused a stroke. It wasn’t until 3 months later, (from an angiogram) that I discovered the cause was from an AVM. There was no indication at any time in my life that there was a problem. I was normal and healthy in every way. I had surgery to remove the AVM 8 months after the stroke. The neurosurgeon was Dr. Richard Lytle and he works at Mission Hospital in Asheville, NC. I’m not sure of which part of Georgia you are in, but maybe this could help you. Right now, it’s 7 years after the operation and I am doing very well. Recovery was slow, but sure. Sometimes I look back and can’t believe how much I’ve gone through.
I know when I first discovered I had an AVM, this board was so helpful to me! It’s easy to feel alone, because so few people have experience with AVM’s. I know people on this board are wonderful and it’s great that you reached out.
Sincerely,
KC
Thanks so much for your response. The only thing I think that would be more difficult than knowing you had this disease would be knowing your child did. I am finding that reading the experiences of others is definitely helping me. When you first realize how rare it is, you really do feel like you’re on an island by yourself.
If I need to reach out to Barrow and have questions, I’ll definitely let you know.
I am sorry to learn about your diagnosis. I would suggest that you have an angiogram. This will help with treatment plans. My AVM was embolized but I still have recurring hemiplegic migraines, tinnitus and brief periods of deafness/fullness in ear. However, my AVM has shrunk in size which is a good thing. I’m in Connecticut, but I have consulted with Pheonix based Barrow Institute that specialize with this condition. Maybe they could help you?