Haven’t had to make a thread for a while. But, I guess I’ll be heading back to Barrow shortly.
I started having an odd light whooshing type sound in my left ear about a month back, which progressively gotten worse on/off - It’s the same side where my AVM is.
Went to my PCP and she gave me an expedited MRI after I told her about my symptom & her knowing of my condition. She seemed more concerned than I was, last week when I went.
I didn’t think much of it at first, since I had no other symptoms. But, it has been persistent this long, so I decided to go in.
Got my MRI results & almost immediately got ahold of my original neurosurgeon at BNI. They’re getting me in for the first available appointment in two weeks.
The MRI showed chronic microbleeds in my posterior temporal lobe.
I still seem fine, but this isn’t exactly what I wanted to hear yesterday.
Not quite sure what he will suggest, but like I mentioned here quite a few times - it’s nice being 20 minutes away from Barrow.
It’s also good to be able to get referred quickly.
Good luck with it. It’ll be interesting to understand what they tell you about what’s going on. A whooshing sound was what propelled me to the doctor 8½ years ago.
I got to live a full life for this long after a brain hemorrhage. That’s definitely something to be thankful for. And, I’m not in any current serious discomfort(surprisingly enough). Just this odd mild flow sound & a few more mild headaches than usual.
But, yeah -
Life sure seems to follow a pattern around me though. I’m doing the best I ever have, physically & financially - now, I get this - whatever this is
Getting his word though, is so priceless compared to some of the folk’s stories I have heard on here.
And, from doing my own research a bit after seeing the MRI results - microbleeds aren’t exactly treatable. They just do what they want, where they want.
Yes. I felt the same about getting to my fifties before worrying at all about my health. That is a complete blessing. But I don’t presume everyone else feels the same.
And yes, I’m not sure what they’d do about “microbleeds” either. From reading on here, some people have CCMs – Cavernous Cavernomas – which I understand to be low pressure blackberry-like anomalies which seep from time to time. I hope you get to find out what’s going on and any advice on how to deal with whatever you have.
Your noises remind me a little of my pulsatile tinnitus but that seems unconnected with things like Cavernomas.
Apparently “micro bleeds” are nothing to worry about. Per verbatim from my neurosurgeon “we get them as we get older”
Him & his neurosurgeon resident could not pick up the sound of blood flow on the left side of my head with a stethoscope around my AVM’s location - yet, I still do have a mild whooshing/pressure type sound/feel in my left ear
But, I will be going back in for a follow up angiogram with a possibility of another embolization. Verbatim again, “the possibility of you having flow is about 1 in 1,000 this long post embolization - but, without an angiogram it’s not possible to tell. An MRI does not show flow within the brain.” - but, if touch up is necessary they will perform another embolization then & there
Again, so thankful to have access to medics like this. So many folks on here do not have this luxury.
Also, we asked about my physically intense job/workouts would have any negative effect on any of this - again, “no, live your life”
So sorry to hear that you also have been getting microbleeds. I didn’t even know it existed until after my first pregnancy. I tend to get them about 2-3 times a year and just have to ride it out. But I’m sure I don’t have to tell you how bad the pain is and how you feel physically once it’s gone. I still choose to leave things as is and not embolize and have been advised as such by my Neuro as the risks outweigh the benefits.
I’m not sure what causes the microbleeds and my Neuro also can’t pinpoint anything specific, but I’ve noticed that it tends to happen after an accumulation of emotional/mental trauma. But that can’t be helped. It’s life, things happen and I’ve made my peace with it.
It’s no picnic and certainly no one wants to go through that kind of pain, but for me, the time it takes me away from my kids is unbearable. They’re very young and I’ve had to explain this to them so they too can accept this as a normal part of my life. It’s great when you have a strong support system and I had that, but the circle of supporters has dwindled as I’ve chosen to distance myself from some people as I lost my gran a couple years ago which has taken a toll on me, and I’m trying to accept that loss, but since then, it seems my AVM and microbleeds are a “nuisance” to those people around me because I can’t always fulfil what they want of me physically. I’ve had people question the validity of the microbleeds, my experience with it, etc. and found that for my sake and that of my kids, it’s best they’re not around me as that vexation just made it worse for me physically, mentally and emotionally. Now I have deliberately adopted the attitude of not giving a rats ass (pardon my language) with these people and keep them at bay by adopting this attitude. I don’t explain my absence anymore from gatherings, etc. and found I’m the better for it.
Thankful for platforms like this. I’ve been a member since 2012, but the support you get here really is remarkable.
I hope all works out well with your work. I also am/was in a very high pressure, cerebral profession but have taken the last couple years off. I admit I miss it, and would be happy to return as long as I can work remotely, and found that brings me more joy (along with my husband and kids) than interaction with some of the people you’d think would support you.
It feels lonely sometimes, but this platform is the perfect place to have people rally around you.
