Another Cured Whoosher story! Please read this inspiring story from Evilisse, a member of our community! Her journey toward
diagnosis was complicated but worth it in the end. The right doctor found not one, not two, but three causes contributing
to her pulsatile tinnitus. She's been treated and no longer hears the whoosh!
Her advice to other Whooshers:
Keep pushing. Be strong and always trust what your
body is telling you. Reach out for support. Don't give up. On my bad days I would use ice packs. They were
my best friend. And never feel bad about having to cancel plans!
(Photo: Courtesy of Evillisse - Answers!)
the night of my 43rd birthday, I went to sleep as normal. I had a great birthday with 3 cakes!
up at 3:30 am with the worst headache, neck pain, shoulder pain and ear pain, all on the left side.
I also started to hear my heartbeat in my right ear.
I took a Benadryl and
ibuprofen, got some ice and tried to fall asleep. I could not, so I went to urgent care and was diagnosed with a bulging
I was put on antibiotics. After they were done I visited my primary doctor because the
pain was not going away. He treated me with more antibiotics for excess fluid in my ears, along with steroids.
next month I was on antibiotics, which did not help. He referred me to an ENT who diagnosed me with IIH but he said he couldn't
help me and advised me to follow up with an ophthalmologist and neurologist.
I saw the ophthalmologist,
who agreed with IIH because he could not see the nerves in my eyes pulsating. They both ordered MRI, which my insurance denied
until I saw a neurologist. My primary doctor sent a referral for a neurologist visit in mid November. I didn't get an
appointment until January 31, 2019.
I saw the nurse practitioner because the neurologist
was out of the country. She ordered 3 tests: MRI of brain, MRI of head and MRA. All these test were read as “normal.”
On my follow up appointment February 28th I saw the nurse practitioner again. She said since everything
was normal what did I want her to do? I requested a lumbar puncture because I had read in order to diagnose IIH this
was needed. That was done on March 8th. My opening pressure was 24. Closing pressure was 9. The headaches
and eye blurriness and whoosh went away for 3 days. I was so happy!
But that was short lived,
for 3 days. My whoosh, my headaches, fatigue nausea, dizziness, loss of balance loss, of concentration - so many symptoms
- came back with a vengeance. I was struggling to walk, to think and just be me. I stopped going out and doing the things
I loved because the fatigue was so bad.
I called my neurologist a few days after and they
said there was nothing they could for me. They apologized for the "ringing" in my ears. I was so upset.
I knew I wasn't crazy. I knew something was wrong.
That's when I Googled whoosh in ear and found Em Whoosher's story. I read it and joined her Whooshers support group on Facebook. I finally read about people who, like me, were struggling with answers and found so much support from this group.
I learned that I should circulate my scans and about Dr. Patsalides, a doctor familiar with many pulsatile tinnitus cases.
I immediately contacted his office and faxed all my reports. I saw Dr. Patsalides on May 20th and I
had an MRV, which finally provided my diagnosis. Dr. Patsalides walked in the room with a picture of my brain. The first
thing he said was that I was very unique: I had venous sinus stenosis, a venous aneurysm, pulsatile tinnitus and intracranial
He discussed the surgery to coil the aneurysm and stent placing. My surgery
was done on June 11th. My surgery took 3 and 1/2 hours. I woke up to silence no more whoosh.
My aneurysm was 14x7, so I now have 2 stents and 14 coils. I took Plavix for 1 and 1/2 months
and I am on aspirin for 1 year.
Silence is so weird now; adapting has been hard.
I continue to have headaches and blurry vision on my left eye. I will follow up in September with my neuro-ophthalmologist,
Dr. Dinken, who partners with Dr. Patsalides.
Dr. Patsalides is my angel. He saved my life.
Presbyterian Hospital in Manhattan was amazing. The staff at Weill Cornell has also been so kind and caring.
I am on a long road to recovery, but I can now say I got this. I have the best
team on my side.
(Photo: Courtesy of Evillisse - day after surgery!)
For more information please click on these links:
Venus Sinus Stenosis
Intracranial Hypertension (IH)
See this and more Cured Whooshers stories on our Cured Whooshers page!