My pulsatile tinnitus story started in 2002 and ended in 2005. The tinnitus began slowly, a "whooshing" sound in my left ear that was synchronized with my heartbeat and got progressively louder over a period of about a year and a half.
My primary care physician referred me first to an audiologist and then to an ENT whereupon I had a CAT scan, a sonogram, and an MRI, none of which revealed anything abnormal.
I was then shunted to the final "tinnitus specialist" of the department who gave me the standard party line about the vast majority of tinnitus being without specific etiology, being just some sort of brain adaptation to hearing loss, etc. I was scheduled for one more meeting with this person before being written off as incurable.
Fortunately, however, I had been spending a considerable amount of time researching, compiling, and documenting as much info as possible from the web which basically boiled down to three things:
1) the evidence at that time (since better substantiated) pointed to the majority of cases of pulsatile tinnitus as likely having an immediate organic cause,
2) my primary care thought he could hear a bruit (murmur) so I couldn't understand why this so-called specialist couldn't hear it as well, and
3) an MRI analysis is only 95% accurate at revealing possible vascular causes, while an angiogram is the gold standard with close to 100% accuracy.
Fortunately for me, on the final visit the specialist had a visiting doctor present so he was definitely putting his best foot forward.
All of a sudden he could hear the bruit and immediately set me up with an appointment with a neuroradiologist for an angiogram.
The angiogram in fact revealed numerous AVFs and AVMs (arterio-venous fistulas or malformations) on the left side of my head. (An AVF is an abnormal connection between an artery and vein.) Yup, that was it all right.
There were also some minor ones back in the occipital region too close to the brainstem to risk doing anything about.
The first of two subsequent procedures plugged about half the AVFs and completely eliminated the tinnitus. Yes!
Clearly the tinnitus had been caused by one of the AVFs near a hearing region becoming more pronounced over time.
The second procedure was done to reduce the possibility of complications like stroke by plugging the remainder of the AVFs.
A final angiogram a year later showed no new complications. What was truly amazing was that the procedure used to eliminate the AVFs was similar to that of an angiogram - a wire was run up from the femoral artery in my leg, through the heart, to the specific region of interest whereupon either a metal plug or glue (!) was used to block the AVF.
No major surgery and I was out of the hospital the next day after an overnight stay. Magic.
I was tinnitus-free for about 6 years after that but have since developed non-pulsatile tinnitus. That's the way it goes sometimes.
My primary care physician referred me first to an audiologist and then to an ENT whereupon I had a CAT scan, a sonogram, and an MRI, none of which revealed anything abnormal.
I was then shunted to the final "tinnitus specialist" of the department who gave me the standard party line about the vast majority of tinnitus being without specific etiology, being just some sort of brain adaptation to hearing loss, etc. I was scheduled for one more meeting with this person before being written off as incurable.
Fortunately, however, I had been spending a considerable amount of time researching, compiling, and documenting as much info as possible from the web which basically boiled down to three things:
1) the evidence at that time (since better substantiated) pointed to the majority of cases of pulsatile tinnitus as likely having an immediate organic cause,
2) my primary care thought he could hear a bruit (murmur) so I couldn't understand why this so-called specialist couldn't hear it as well, and
3) an MRI analysis is only 95% accurate at revealing possible vascular causes, while an angiogram is the gold standard with close to 100% accuracy.
Fortunately for me, on the final visit the specialist had a visiting doctor present so he was definitely putting his best foot forward.
All of a sudden he could hear the bruit and immediately set me up with an appointment with a neuroradiologist for an angiogram.
The angiogram in fact revealed numerous AVFs and AVMs (arterio-venous fistulas or malformations) on the left side of my head. (An AVF is an abnormal connection between an artery and vein.) Yup, that was it all right.
There were also some minor ones back in the occipital region too close to the brainstem to risk doing anything about.
The first of two subsequent procedures plugged about half the AVFs and completely eliminated the tinnitus. Yes!
Clearly the tinnitus had been caused by one of the AVFs near a hearing region becoming more pronounced over time.
The second procedure was done to reduce the possibility of complications like stroke by plugging the remainder of the AVFs.
A final angiogram a year later showed no new complications. What was truly amazing was that the procedure used to eliminate the AVFs was similar to that of an angiogram - a wire was run up from the femoral artery in my leg, through the heart, to the specific region of interest whereupon either a metal plug or glue (!) was used to block the AVF.
No major surgery and I was out of the hospital the next day after an overnight stay. Magic.
I was tinnitus-free for about 6 years after that but have since developed non-pulsatile tinnitus. That's the way it goes sometimes.
