Another Cured Whoosher! Brain Arteriovenous Malformation (AVM)
for stories like this one.
Real experiences from real people who have had a journey - usually a complicated one - with pulsatile tinnitus,
but have ended up with a diagnosis, treatment and silence. Each experience is a reminder of the complexity of a relatively
rare symptom - pulsatile tinnitus - and the need for patients to be their best advocates.
Chuck, thank you for sharing your
story. I sure am thankful that this site helped you. Enjoy the silence!
It all started in Jan 2018 when I got up
in the middle of the night and heard a faint noise. The noise was very faint
at first, a low volume of the whoosh, whoosh. It was a couple of months before it started getting louder. Eventually, I heard
it all the time.
The next day I heard it at work and realized
the noise was coming from me. So, I started with my primary care doctor who thought I just had some fluid on my ears and prescribed
treatment for that. Of course the noise did not go away and a couple more trips back before we thought that I should see an
ENT. He seemed concerned but also had no idea what it could be. Gave me the usual hearing tests before deciding to send me
for an MRI.
You guys who are going through this are well aware of the time lapses between appointments,
tests, and the uncertainty of just what is going on here.
The MRI came back with everything looking
"normal" and a general feeling from my primary care and the ENT of I am not sure what the next step is. I did some
web searching myself when I ran across Whooshers.com. Hey, this sounds just like what I am going through. I read all the stories
and particularly the ones of successful healings on the Cured Whooshers page.
I went back to my primary with the website pulled up on my phone telling her we
need to take this up to the next level. I am no medical person myself but from what I read a neurologist was the next step.
He said that he had heard of this before and there was really nothing I could do about it but ordered a CTA with contrast
anyway. CTA came back normal and the neurologist was ready to recommend that I just live with it.
wasn't though because to me the constant whoosh whoosh was very annoying and getting louder I thought. I showed him the website
and talked of a neurointerventional radiologist. I had also read about circulating your test results and he agreed to do that.
He sent them to a neurological surgeon in Louisville, KY who looked them over and found nothing himself.
We were at this 9 months now and to tell you the truth I felt fine physically. Nothing really wrong
with me except this constant noise in my head. Maybe I could live with it. But as I kept going back to this website
I kept finding new things to try. I read where a doctor put the stethoscope to a patients head and heard the noise and that
others recommended not to stop and that a cerebral angiogram with contrast is the gold standard of testing.
So, with a renewed purpose I made an appointment with a second ENT and asked him to listen with his
stethoscope. He did and he heard the noise himself. What a relief, I am not crazy after all.
this new evidence I was sent to the neurosurgeon who also heard the noise and set me up for the angiogram where he found the
arteriovenous malformation (AVM).
It is important to stop here and say do not quit
on this. I know there are many causes of pulsatile tinnitus and some cannot be ignored. That was my case. The neurosurgeon
said mine was a stroke waiting to happen. If I decided to just live with it it may have not been long to live with it. Dr.
Jonathan Hodes of Baptist Health in Louisville, KY is the man who got me fixed. First
doctors I went to were concerned but unsure of the direction to go in.
I got off Whooshers.com was used to help the doctors go in the right way. Thank you for starting
this site. You have helped a lot of us fellow whooshers. I encourage you all who are still suffering to not give
up but keep trying. My prayers are with you.
is a symptom. There are many possible causes of pulsatile tinnitus. For more info on this and other causes see the Cured Whooshers page where you'll find links to medical reports and more personal stories.
Another Journey Toward a Pulsatile Tinnitus Diagnosis
I recently received this personal story from a Whoosher who pushed and pushed for diagnostic tests - tests that our symptom,
pulsatile tinnitus, clearly warrant - and she finally found a diagnosis. It's yet another inspiring example of diligence and
perseverance for answers.
My journey began at the
end of January 2018. I woke up one morning with my left ear blocked…like I had an ear plug in my ear and it would not
clear. I was not sure why this occurred since I had not been sick at all but have had a history of sinus/allergy issues forever.
I went to my ENT who told me to take
allergy medicine daily for 30 days along with a nasal steroid which would open up the ear over time. I did as the doctor told
me and followed the medicine routine religiously. Nothing changed.
At the same time I was having dizzy spells and my body felt off. I then started hearing my heartbeat
in my ears about 2 weeks after my blocked ear which started keeping me up at night since it was worse when I laid down. I
was not sure what this was, so I went to my General Practioner and told him my symptoms and informed him what my ENT told
me. He agreed with the ENT and told me to keep on the allergy medicine routine to see if this would change the outcome. He
said that since my ear was blocked I was probably more aware of the sound now. He did order blood work though since I had
not had a physical in a long time just to see where my levels were and to rule out any other possible issues.
I left the doctor’s office and tried to grin and bear it.
I struggled with sleep but did the best I could to ignore it and move on.
My blood work came back about 1 week later which did show that my thyroid was high and
my Vitamin D was low. The doctor told me to buy a Vitamin supplement but did not feel that my thyroid levels were “high
enough for him to begin treatment.” I thought that was odd especially since thyroid issues are hereditary and run in
my family (my grandmother, mother and aunt all have thyroid issues) but trusted the doctor at that time since this was how
I was raised.
I was not feeling well
and the whooshing was really bad at night. Some nights were so bad that I could feel my heartbeat throughout my entire body
which was keeping me up.
It was now
the end of February 2018 and I was trying to work through it but having issues feeling ok at work. I then went back to my
GP in March and told him that I was not getting better, I was not sleeping well and that my body felt like electricity was
running through it. He still refused to deal with my thyroid and referred me to a neurologist since my head was now feeling
tingly all over when I touched it or ran my fingers through my hair. I went to the neurologist the next day who said he thought
it was migraine related and ordered an MRI.
The results were back a few days later….they came back normal. I was discouraged but the neurologist said I should
take Depakote (anti-seizure medicine) for 30 days to see if this helped with the whooshing and sleeping. It did for a bit
but then came back. Plus, I was not happy having to take medication for something when I did not have a diagnosis but I did
as the doctor told me and followed through with the medication for 30 days.
After 30 days was up and no change in results in the whooshing arena, the neurologist
told me he was not sure he was able to help me any further. By this time, I had come across Whooshers.comand asked the neurologist if he would order an ultrasound of my carotid artery to check for anything vascular,
which he did. He ordered the test for my neck (not my head) but I thought it was better than nothing.
I found that doctors don’t like to request tests unless you
push and push - so that is what I started to do. I was on a mission to determine what was wrong and I was still feeling awful.
The ultrasound was completed in late March and came back normal. Discouraged again, as I knew that there was something wrong
but doctors were telling me that it was in my mind.
Funny thing was when I was getting the ultrasound, the technician asked why I was there and I told her about my whooshing.
She asked if I was anemic since she was and did get that whooshing sound when her levels were low. I told her that no one
had said I was but it made sense to me that that could be an issue since my thyroid was high but no one was willing to help
I then started down the
anemic path thinking that something with my thyroid issues may be causing my whooshing issues. I went back to my GP to push
for getting on thyroid medication. I was then told that I was having anxiety and he wanted me to take Lexapro to deal with
that first, before anything else. I did not go back to him after that.
It was at that time that a friend referred me to an endocrinologist to have my levels reviewed.
Why my GP never mentioned that there was a doctor who specialized in thyroid I don’t know, but I was willing to do anything
at this point.
I needed someone
to believe that I was having symptoms even if the test results for the most part were coming back "normal."I did not know how to get better and needed to find a sympathetic doctor who would really take the time to help me
figure out what was wrong.
went to see the endocrinologist at the end of April who looked at my blood work and said that I needed to be on thyroid meds
for sure. He did not understand why my GP was not willing to put me on thyroid since my levels were clearly an issue. He also
said that thyroid issues cause rapid blood flow, which may be why the whooshing sound I hear was high though he did say that
my thyroid issues were not the reason for the whooshing since it was not a common symptom of thyroid issues. He also told
me to not take Lexapro since I was not anxious or depressed and said that he finds that a lot of GPs prescribe anti-anxiety
medication when they do not know how to diagnosis or treat thyroid issues. He said that anxiety is a very common thyroid imbalance
issue and with what I have been through it made sense that I would have a bit of anxiety since I was not feeling well.
I was relieved that my thyroid was now being dealt with but was
still unclear about the whooshing. I did leave this doctor’s office feeling optimistic, which I had not done in
awhile. I left that day with a better outlook and knew I was on the right path. I started taking my thyroid meds the next
day and a lot of my symptoms subsided (dizziness and electrical feeling throughout my body), however the whooshing was still
there, just not as loud as before.
then continued on the path of working to figure out my whooshing. I found a new GP who agreed with the possibility of anemia
and found that my ferritin levels were low, which can cause a whooshing-like symptom. I was on iron supplements for 90 days
and my whooshing did improve a bit but was still there.
When I went back to check my ferritin levels and they came back within normal range, my new GP decided to
order an MRA since she agreed with me that this may in fact be something vascular since my “levels” did not eliminate
my whooshing symptoms. I was grateful that she was willing to work with me to find an answer.
I underwent my MRA test in August which came back abnormal
showing that my right cavernous carotid artery and the right supraclinoid ICA segment were approximately 50% narrowed, causing
obstruction in blood flow. It was bittersweet for me since artery narrowing is a scary finding, but at the same time
I was finally getting answers and tests were coming back with a finding.
I was not crazy!
Both my ENT and my new GP referred me to a neurosurgeon who then requested a cerebral angiogram to be completed.
I had this test done mid-August which came back confirming the finding. The results confirmed an approximate 70% narrowing
of the right cavernous carotid artery and that it suggests possible Moyamoya disease, a rare progressive cerebrovascular disorder
caused by blocked arteries at the base of the brain.
I have now been
referred to a vascular surgeon in LA who specializes in this type of finding and the neurosurgeon was able to get me in ASAP
for this to be reviewed and treatment options discussed.
I cannot believe that I finally have a diagnosis! I pushed and pushed and was finally able to find something.
I am optimistic about the outcome and really believe that I will have treatment and hopefully whooshing gone by the end of
this year at the latest.
More to follow
once I meet with the vascular surgeon, but I wanted to let everyone know that Whooshers.comdid give me the info I needed to continue to push these doctors in the direction of a diagnosis by insisting
on ordering tests. It took time, but I was finally able to get an answer after continuing to follow up and find doctors who
were willing to help.
up and know that there are doctors out there that WILL help. You may just need to keep pushing to find one.
Carrie, thank you for sharing
your story. A diagnosed cause of pulsatile tinnitus is just the first step, but it's a huge step. Good for you for being
your best advocate, and we look forwad to following your progress.