Hello all, I am new here. I found the group by googling “AVM hiking”. I went hiking last weekend with a friend, stood up to fast, and felt extremely dizzy not once but three times. One of those times was the worst I had ever felt dizzy. I think I was just dehydrated and not used to that terrain. It was off trail too.
The boring stuff
I was diagnosed officially with an AVM about a year or two ago. It started in 2019 when I was diagnosed with tinnitus. The doctor wanted me to get an MRI to make sure nothing was seriously damaged. From there they saw a large mass which was thought to be a tumor at first. I had several MRIs since then at different locations about 6 months apart. The last one was at a facility that got a brand new MRI scanner within the last year. All MRIs showed no sign of growth and the imaging on the last MRI machine was clearer then the others. I also work for the radiology company that looked at everything. I was able to call up different rads right away and ask for a quick second opinion. One of them said that if it was his wife in my position he wouldn’t worry one bit about things.
That being said, I am here to check the place out and get more information on it. Between a bad back (degenerative arthritis), a bad ankle (tendon issue, its healing), bad big toe (degenerative arthritis), tinnitus, dry eyes, possibly a mini stroke (the tech kept asking me if I was sure I haven’t had one) and a few other things wrong with me I feel like a hypochondriac but at least I have the medical records to back it all up and now its time to get some info on another thing.
The fun stuff
I like to camp, hike, read, spend time out doors, also spend time online gaming. I work in IT currently but looking to get out of that. I am 36 years old and hoping to have a few more without any AVM bursts.
Hi @Litch! Great to have you join us!
I discovered my AVM (specifically a Dural AV Fistula flowing into my right transverse sinus) because of the pulsatile tinnitus. I was intrigued by this faint sound I could hear. Over time, it got louder and I started googling to see if there was anything worth going to the doctor about. Finally, I discovered AVMs and fistulas and pulsatile tinnitus and had my “oh sh*t” moment. I went to the doc.
My pulsatile tinnitus was audible (“auscultatable”) extracranially and I was formally diagnosed by an ENT consultant in August 2016. He used a stethoscope to plot over the outside of my head until he landed on the spot where the artery was chucking blood into the traverse sinus. He just listened to it for quite some time.
Mine was sufficiently gushy to flow both ways along the TVS and I could hear the disruptive flow in both ears. Over time, it seemed to develop and felt like it was adversely affecting the flow in my sagittal sinus and (I assume) my short sinus and I think it was those that led on to me starting to feel a bit dizzy. Since my AVM was a single shunt (it appeared on MRI as a single white circle of high-flow blood, seen in cross-section) and into these sinuses, very much in the surface of the brain, it was categorised as a DAVF. The assessment criteria for DAVFs is based on the Cognard scale (different from regular brain AVMs) and a type I is generally considered unnecessary to treat. Mine was something like a IIa or IIb with an amount of “reflux” or “retrograde” (reverse) flow going on, pushing the normal return flow blood the wrong way, and like I say, making me feel increasingly odd, “dizzy”. I’d say it was more a weirdness than straight dizziness – different from something that is impacting on the balance in one’s ear.
I had mine closed off with glue, injected via a very fine tube, a catheter, inserted at my groin and navigated up to the right place to bung some glue in the right place and get my blood pressures all back in the right places and I’m still doing fine today.
If you’ve got any questions, fire away. I’m intrigued to know if you’re having any more investigations – using a catheter to inject contrast material whilst under x-ray (a process called a catheter angiogram) to illuminate the vessels and observe the flows is usually the top-notch way to see what’s going on inside.
Hi Litch, Good news-- your Seahawks broke the 21 year drought.
The bad news from what I can gather is that you’re in a kind of limbo. If that’s true you’re definitely in the right place. If I had to guess I’d say 75% of the people here have been or are struggling with that… also having to make a very very very tough decision with very very very serious consequences with very very very imperfect information.
Here you will get some good information based on real experience and you’ll get good emotional support. I’m more for the support because I’m not smart enough to sort out all of the technical stuff.
You managed to strike my pet peeve right away. “I feel like a hypochondriac” You’re not a hypochondriac, not even a little bit! A lot of people here have been made to feel that way for various reasons including the docs not really knowing what’s going on.
The moderator DickD went through that in spades.
Anyhow, welcome and best wishes for all of your health issues and other issues, Greg
(ooops, it was the Mariners that broke the drought)
Welcome to the family @Litch
Sorry to hear about your diagnosis and recent events during hiking… the dizziness could be related or even unrelated so it would be best to speak with your medical experts overlooking the AVM.
My advice would be to try and live life but also don’t push your body too much and look after yourself as much as possible… God bless!
I’m sorry so where is your AVM?