Does anyone hear whoosing sounds and has it been cured by surgery?
It's called Pusatile Tinnitus.
A rhythmic, whooshing sound caused by excessively rapid blood flow through the arteries and veins. It has been given the term "bruit", French for noise. On some occasions a patient with a brain AVM may become aware of the noise, which can compromise hearing and interfere with sleep in addition to causing psychological distress.
Thank You.
Lori I heard it all of my life and never knew it wasn't normal so I never bothered to ask anyone about it. After my bleed/craniotomy it's gone. Weird not to hear it anymore.
Trish,
Please be thankful you no longer have this awful whooshing sound.
That means you are cured! Yeah!
I'm about to go insane with the noise.
Lori
I don't, but I remember reading something about it on here...maybe do a search on "whooshing"?
Ive heard whooshing sounds all my life and I thought it was normal too. When my doctor asked me about it 2 years ago I realized it wasn’t normal. I have to take medicine to help me sleep because of it, although I usually only hear it when im laying on that one side.
I actually found it rather soothing back then. Of course I had no idea what it meant, but ignorance is bliss.
My avm got worse, so the whoosing got louder and it kept me up but before then I would always plug my ear to hear it
Thanks, I have searched without luck. It's an awful sound that is 24/7 and keeps me up at night. If you don't have it consider yourself lucky. There are 50 million Americans with tinnius but only 3 % have Pusatile Tinius. It is a symptom of AVS and I hope it can be cured.
If you have it, please let me know what you do for relief.
Thanks.
Before my mom found out she had AVM, her only symptom was whooshing sound (varying in intensity) in her right ear. She had embo almost 3 months ago. Still hearing some but the intensity is much reduced now. We don't know yet whether she might need another embo or the sound may eventually disappear as the recovery continues.
Hi, Thank you.
Can you tell me what embo is? I am new to all this. What type of Dr. did she use for surgery?
My whooshing comes & goes, but tends to be more noticeable during migraine. I can remember hearing it sometimes while trying to go to sleep as long ago as age 8.(I'm 40+) I thought it was normal, too, until my AVM diagnosis last April. My mom asked me why I had never told her about it. It never occurred to me to tell her because I didn't know it wasn't normal.
Embo is for embolization. It's a procedure that passed glue-like material into the vessels that feed the AVM to occlude portions or all of the arteriovenous malformation. It's not an open surgery. Check out this place for more information: http://www.mayfieldclinic.com/PE-AVM.htm Hope this helps. Neurosurgeons are the specialists treating it.
I'm no help at all except to say I hear it too. Mine started in April, 2011. That's what started me on my path to diagnosis for a DAVF (dural arteriovenous fistula). I'd had the headaches and some tenderness behind my left ear for years, but try to get an interist to listen to the symptoms of a woman in her 40's. An angiogram showed it is not life threatening, but is complex and extensive. Any attempt at shutting it down would be a higher risk than just living with it.
Most days, living with it is just mind over matter. I use music a lot and driving drowns it out. Every once in a while it makes me crazy and I'm looking for solutions for those days. I'm considering cannibus as I live in a state that allows it for medicinal purposes. I'm still trying to figure this all out.
Good luck to you.
Hi Lori. I did a search on here for you…
http://www.avmsurvivors.org/main/search/search?q=Bruit
And another one…
http://www.avmsurvivors.org/main/search/search?q=Tinnitus
Hi, I went to see a Dr at UCSF ( San Francisco) and he said people with pusatile tinnius have DAVF. He wants me to have a CT Veniogram but I think I am going to have an angiogram. I thought having DAVF that it could be cured. Or at least I was hoping so. I am not sure how to live with it. Mine is 24/7 and goes from deeper sounding whoosh to hight pitched.
You should really look at the website for Whooshers.com and the facebook page that is Pusitile Tinnitus. Everyone on there has a whoosh. I am trying to find out what is causing mine.
Can you tell me what type of Dr. you saw? I have found that 3 ENT Drs later, they know nothing. Can you tell me was the angiogram difficult? You really are very helpful, thanks!
SO the big question is if you have AVM do you also have pusitile tinnitus?
ENT's really aren't trained for this. Sorry it took 3 for them to admit it. My CT scan just showed that there might be a problem. The angio showed the problem, but it was no fun. I'm not very good at sitting still and I still get twinges in my hip.
The radiologist who performed the angio was qualified to embol a simple DAVF. The radiologist who read my angio could have mapped out a more complex embolization, but felt it was very risky in light of the "non life threatening" nature of the DAVF.
I've been to a neurologist. He seemed disinterested and wanted me to have an MRI. I got tired of throwing money at this since I can't do anything except wait to see if I ever have a bleed.
From what I've read, some AVM survivors never get the pulsing tinnitus. However, I'll take pulsing 24/7 over seizures - if I had to choose. So far, the choice was made for me.
I learned about bruits during paramedic training back in 1979. We were taught to use a stethoscope to listen to the necks of older patients during physical exams. If we heard a whooshing sound we were supposed to report it to the hospital as part of our report. Little did I realize it would help alert me to a serious problem in my own life.
Some years later I began hearing my own whooshing sound in my right ear. It wasn't the quiet, barely audible noise one hears when their head is lying on a pillow in a very quiet room I could hear this thing during the day during normal activity. It was worse at night. I equated it to one of those old 1940's "B" grade jungle movies where the explorers are lost in the jungle and the cannibalistic natives are dancing and beating on their drums in preparation for an attack. At that moment the camera cuts to the woman in a pristine white blouse and jodhpurs who screams, "I can't take it anymore, STOP THE DRUMS!!!"
Okay, it's a bit melodramatic, but damn, that is one very annoying sound. Mine diminished after my third embolization, and disappeared completely after the 4th. They had achieved about 85% reduction of the fistula and that held things in check for 9 years. In '92 I had my craniotomy which totally obliterated my malformation.
Fire Buddy
my wooshing has being going on continously for several weeks from as soon as i wake up to when i go to bed i have an MRI and an angiogram scheduled for the 26th of this month and i'm seeing a neurologist on the 29th to see what they can do for me. I find the wooshing really annoying as it's all i can seem to hear when i'm in a quite room if i'm standing up it's even louder i also thought it was normal to hear this till i found out that i have an AVM which i wasn't told about for six years although it was on my medical records
i believe mine is located in the front leftal lobe but i'm not to sure about this at the moment i have the same thing on the left side but don't jerk i just seem to drop things with out thinking it's really annoying when i'm doing something and it just happens
It's really good to know you are living free of the AVF. Cheers! Do you mind sharing your post-embos recovery? Any difficulties at all if you reall? I'd like to have some understanding of what my mother is going through right now. She had an embo three months due to loud bruits in her right ear. But she is having a difficult recovery so far. Thanks a lot!