Basal AVM? Tinnitus, headaches, altered taste and smell... what to do?

I started having sudden pulsate tinnitus following a flu over a yr ago and its getting louder while my hearing is becoming affected. By the end of the day my ear feels prickly and burning. I have had increasing headaches, weird taste/smell and other odd things that are momentary over the years. twice I have been walking and ended up walking diagonally to the left instead of straight for about 5-10 seconds without any control over my body. I have had migraines since I was 10 and I am in my 50’s now.

I am on my 2nd specialist and 2 more appointments coming up with an Ontariologist for hearing test and a Neurologist. I’m will need to consider if I leave it or have surgery, but it is deeper in the brain and therefore I’m told more risky. I also don’t know if they do gamma here or the coil, will need to find out.

Catherine,

Welcome to the site! I hope you’ll find here some people to share with, and perhaps some answers. I’ve got a dural AVF that was giving me pulsatile tinnitus which I’ve just had embolised but with the basal ganglia, a radiotherapy may be the least invasive… you’ll need to look to the doctor’s to advise on what they will do / dare do, etc.

You can use the search facility on the site to see stories from other people, for example this search for “basal”. However, whilst we have thousands of members, not everyone is “active” so beware of writing replies into old conversations. With a bit of luck, some current members will see your post and have some experience to offer.

Very best wishes,

Richard

Thank you for the reply Richard.

I was dx with an avm last fall but didn’t know anything else until Wednesday, its still a bit of a shock. I am hoping to be able to learn about it and symptoms, issues, options.

The pulsate tinnitus is getting to me, it has been increasing and some days with the burning feeling by the end of day I really feel like jamming a letter opener in there to get rid of it. Not logical, but it gets to me, I’m sure you understand that feeling.

How long did you have pulsate tinnitus? Was it all the time and loud? Intrusive?

Meanwhile I’m Waiting again… for my 3rd specialist, the neuro appt.

I had it from Oct 2015 until April 2017, increasing in volume I would say from Oct 15 until November 2016. I think after that I got used to it / I had other symptoms that were more bothersome, so the PT faded behind the other stuff.

I would say the more you focus on it, the louder it gets – like regular tinnitus. So, much better to distract yourself, keep busy, think about other things if you can. Obviously, it seems much louder at night so less easy to just ignore. At one point, I fancied to myself it was like being back in the womb and was the sound of a parental heartbeat, so tricked myself into taking it as a positive thing. Not 100% successful but worth a try – just a different mind set. For info, mine sounded like the washing machine on pump out, not very soothing.

In later months, it changed and became more like an actual heartbeat, less rough sounding, less like a whoosh. I could hear the proper thump-thump of a pulse rather than a single whoosh. I don’t know why and I didn’t take it as a positive sign, necessarily, but with everything else going on, it became the least intrusive thing when sleeping.

I had an embolisation at the beginning of April. I can still hear a heartbeat, not a whoosh post op. The neuroradiology consultant says I can just hear normal flows in parts of my head that used to be quiet and I’ll get used to it, which I have, but I’ve still got quite a few symptoms, so I think there will be more to do, once I have my check-up angiogram.

Do your best to focus on something else. It’s there. Let’s assume we can get it fixed at some point. And if it is the reason you went to the doc to say something is wrong (as was the case for me) we can look upon it as a potential lifesaver. Annoying, noisy lifesaver but perhaps a lifesaver nonetheless.

Good luck! It’s an interesting journey we are on!

Richard

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I see you’re from Winnipeg, and are frustrated. I had a great experience however had presented with a bleed and spent time in the neuro ward. Once that was stabilized the treatment falls in to the elective category as not emergent. Although in the elective category, monitoring mine was never a discussion of any merit beyond being an option, however not recommended by my doc. That’s when things slowed down but was able to get gamma knife done 6 months after I was released from hospital. They are really busy folks but as with all our health systems we have to be our own advocate. Like I’ve said in previous posts, I was treated great and have the utmost respect for all I dealt with in the neuro surgical side. I was fortunate in having treatment options with mine, however thy are all different for sure. I hope things start going smoother for you. Take Care!

Thank you Richard, seeing this as a lifesaver is a good point. I have def tried to look at the noise from a more positive frame but having difficulty with it bc there is no break from it ever and it is increasing over time. I’ve been feeling frustrated for sure. Today I recieved a letter from the neuro for an appt in 6 weeks with blood test and CT booked prior, so thats a good sign.
He is testing kidney function and this has me puzzled. I need to research this I guess to see if there is a link between basal g avm and kidney.
Def an interesting journey…

Hi JD, Thanx for the reply. I received a letter from HSC neuro today and my appt is in 6 weeks, so thats really positive. I’ve had to wait 4 mths each referral and thats been frustrating. I’ve been getting headaches daily now for so many weeks I’ve lost count. Some days my thinking and memory is a bit foggy.

I was impressed he is requesting a blood test and CT done prior to appt, because an MRI was done in the last 6 mths.
I work in our health system and you’re def right… its important to self advocate.

It will be good to get some answers and have a conversation with a neuro who can give me some answers about the type of AVM I have and whats going on, what to expect, etc… esp after waiting so many times.

Yes the waiting is difficult for sure, hopefully it goes well. I think you’ll be impressed with them, I hope so at least given the difficulty with these things. Although mine happened relatively quickly, I did have a few lengthy waits for the diagnostics, i.e.// MRI and angio specifically. Make sure you stay in touch, take care. John

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Hi John,
Things have gone relatively fast. I am impressed with HSC so far. Neither the MRI or contrast CT gave a good enough picture of the AVM. So durin my consult he wanted to do an angiogram, which is done and I am recovering with some reactions to the contrast. They got some clear pics of it this time and I am Waiting for the f/u appt with neurosurgeon on results to find out if this is something to be concerned about or not.

Good to hear things are moving along. They are crazy busy but I found them quite simply outstanding human beings! I’m scheduled November 18th for my one year MRI, based on those results hopefully an angio date within the next year. Good luck at the follow up. And again please stay in touch, take care.

Yes, moving fast.
Struggling with asthmatic after-reaction to contract dye, same as after the contrast CT. Its day 4 and if its not getting better soon, I’l have to find myself a dr appt or something. Lucky to be able to manage at home so far. hoping today is the turning point.
Hope your Nov appt goes well.