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Deborah’s story: Living with pulsatile tinnitus

Last Modified: February 19, 2021

Diseases & Disorders, Family Medicine

Pulsatile Tinnitus

Have you ever heard a ringing or buzzing in your ears? You probably have, but chances are the noise you heard came and went, requiring no medical treatment. However, if the noise remained constant, you could be dealing with something more. This was the case for Deborah Eidson and her bout with pulsatile tinnitus, a sound in the ears that seems to match your heartbeat or pulse. While there are many causes, most tend to stem from circulation problems. Because this condition can occur in one or both ears, it can become increasingly frustrating and interfere with everyday life, causing stress, anxiety and even depression. To better understand this ailment, we asked Deborah to speak on her experience, expanding on the long road to her diagnosis and recovery.

Can you walk us through your health journey?

Yes, but it’s best to break it down into a timeline since it took place over so many years.

1987: I started to notice a problem with my left ear back in 1987. I constantly heard the sound of my own heartbeat thumping in my ears. It was extremely annoying. Realizing this was not normal, I scheduled an appointment with my family doctor, who then sent me to an ENT. They promptly performed a hearing test, then checked the area around my left ear to see if they could hear or pick up any noise. Unfortunately, they couldn’t see, hear or find anything.

After that appointment, the ENT referred me to a surgeon. He performed a contrast test during my visit, where they inserted a dye into the femoral artery of my right groin. The image on the screen highlighted a vein situated very close to my ear. This vein was producing the pounding sound of my heartbeat within my left ear. The condition is known as pulsatile tinnitus. I was relieved because I finally had answers and a diagnosis for my situation. However, my relief was short-lived because there was no known treatment for my diagnosis at that time.

2019: I had resigned to living with the constant noise in my ears, and I did for many years. Then, in April of 2019, the tinnitus got even worse and was accompanied by internal vibrations that I could feel from my chest down to my feet. Finally, after experiencing dizziness and pain in my left ear, I decided to go for another checkup. Like before, no one could see or hear a problem, and they had never heard of pulsatile tinnitus before. With the knowledge they had, I was diagnosed with having fluid accumulation in the middle ear. They instructed me to increase my fluid intake, take my allergy medication daily and try a steroid for 7-10 days to help clear things up. Sadly, the treatment didn’t help, and due to all the stress, I suffered a shingles outbreak.

Eventually, I got in to see a nurse practitioner within my primary care provider’s office, and they recommended I schedule an appointment with Adam Kaiser, MD, Ear Nose and Throat Associates. During my appointment, he performed a pressure test and a hearing test. Unable to hear anything in my left ear, he decided to order an MRI with and without contrast dye. The results showed a high riding bulb left jugular vein. Dr. Kaiser mentioned that it could be the culprit and suggested that a hearing aid may help mask the sound in my ears. I did not choose that option.

In the fall of the same year, my heart rate was very high. Looking back, it was probably due to the anxiety of my prolonged condition, but no matter the reason, it warranted a trip to the emergency department at Parkview Hospital Randallia. My bloodwork and tests came back normal, so they sent me home. As things progressed and my condition worsened, it became even more debilitating and even started affecting my sleep. I spent the rest of the year in and out of my primary care provider’s office to address the constant noise and vibration issues. He ordered additional CT scans and medications with no substantial resolution to my condition.

2020: As the new year approached, my primary care doctor referred me to James Dozier, MD, PPG – Neurosurgery. He performed a thorough examination, testing everything from my sight and hearing to my balance. He was able to hear the noise I had been describing, finally confirming my condition. He gave me two options: go to the Cleveland Clinic or schedule an appointment with Garrett Bennett, MD, PPG – Neurointervention. I chose Dr. Bennett. During my visit, he performed an angiogram which showed some protrusions in the arachnoid granulation. Dr. Bennett drew a diagram of the area and explained that the bulges were most likely causing the thumping heartbeat noise I had heard for so many years. His only recommendation was to stent the area.

On July 2, 2020, I went in for the stenting procedure. Upon waking up, I quickly realized the heartbeat noises I had heard for so long were gone! I was elated! I only had to stay in the hospital for a day or two, and then I went home. Later that fall, Dr. Bennett ordered a follow-up CT scan to verify that all was well with the stent and procedure.

Deborah

How are you doing today?

After my surgery, I was on blood thinners for a bit to ensure there wasn’t any clotting, but I’m no longer taking them. As of today, I’m only taking aspirin and will continue to do so for the rest of my life. I’m also thrilled to report that I no longer hear any heartbeat noises in my left ear! With that said, the hum and vibrations are still there, but we are pretty sure it has something to do with the high riding bulb on the jugular vein.

Is there anything you’d like to say to your care team?

Everyone did such a great job! I have no complaints. They all did exactly what they needed to do, taking excellent care of me. As for Dr. Bennett, he is so easy to talk to and so personable. He explained everything so thoroughly and in great detail. You can tell he’s excited to assist people with their problems and help them find answers. Honestly, I can’t say enough good things about him.

What advice would you give others going through a similar experience?

Well, I would say listen to your body and don’t be afraid to get more than one opinion. Keep at it and be confident when asking your primary care doctor for referrals if needed. Hopefully, if someone is going through a similar experience, they can take my story and this advice to get the help and answers they need.