MemberHi everyone - I'm excited to share my experience with the Round and Oval Window Reinforcement surgery for hyperacusis offered by the Silverstein Institute in Sarasota, Florida, USA. I willing share this information to help those considering this surgery and to those in the early stages in their hyperacusis journey. I will spare no detail and I know many are eager to know specifics. I will do my very best to answer as many questions as I am able to across platforms.
TL;DR: - Surgery success! 15-22 dB increase. Side effects being monitored over the coming months. LDL's and hearing test results attached.
INTRODUCTION
A little background on my condition: I developed severe bilateral hyperacusis and reactive tinnitus as a result of acoustic trauma (loud live music for a prolonged duration) suffered in June of 2018. From this onset, I had a feeling of fullness and discomfort for the first 8-10 months throughout my ears and nerves on the sides of my head. This was the most uncomfortable part of my acute symptoms. The hyperacusis also developed immediately, but I didn't know how to manage it so I had a series of rather serious setbacks within the first year from onset. The tinnitus came on gradually and became increasingly louder, but has since more or less stabilized with almost daily reactivity still (flutters/spikes).
When I first had my LDL's (Loudness Discomfort Level) tested in November 2018, it showed between 55-65 dB over a range of frequencies. I have no discernible or clinically significant hearing loss across all frequencies prior to surgery.
From November 2018 - May 2021, I did Tinnitus Retraining Therapy (TRT) with the hope of increasing my LDL's and habituating to the tinnitus. For this therapy, I wore pink noise generators 8 hours per day in both ears. The device I use is called Amplisound Quell - looks like a simple hearing aid with an open canal design. In conjunction, I also did CBT (cognitive behavioral therapy) to help my mental state. In May 2021, after over two years of TRT, my LDL test disappointingly showed no improvement - still ranging between 55-65.
I honestly love wearing the pink noise generators as they are very soothing and relaxing to wear. I do not regret trying TRT as I feel I have made minor improvements - the feelings of fullness in my ears have largely disappeared, my hyperacusis seemed to have slightly improved (but not according to the testing), and my tinnitus continues to become more stable as time goes on (less spikes and flutters).
In my research, the surgery seemed to be low risk, high reward. I contacted the Silverstein Institute and had two separate one-on-one video calls with Dr. Herbert Silverstein and Dr. Neil Nayak. After discussing my case, they each recommended me as a good candidate for the surgery. To my surprise, Dr. Silverstein even mentioned that those in the acute stage should just get the surgery and not waste time or money on treatments such as TRT. Again, I don't regret doing TRT at all, but that was interesting to hear from the big man himself after previously reading that this surgery is recommended for those with stabilized symptoms, 1-2+ years. I went forward with scheduling the surgery for mid-June 2021.
LOGISTICS/SCHEDULE
- Sunday: Travel day, fly in. Flight was difficult coming from the Pacific Northwest, but made it ok.
- Monday: Morning physical with Dr. Nayak. Sign consent and risk forms. Talked about surgery details. Quick appt. Front desk very helpful in breaking down insurance/costs/deductibles etc. CT scan requested to be completed locally before travel and sent to clinic.
- Tuesday: Morning hearing test (eardrum, hair cells, LDL's, tinnitus pitch matching, speech recognition) and meet Dr. Silverstein.
- Wednesday: Surgery day. More on this below.
- Wednesday afternoon through the following Tuesday: Rest at hotel. Very helpful to have a family member/friend care for you during this time - I had my brother there the whole time. If not, I was told you can hire a nurse to get you back to the hotel and look after you until anesthesia wears off within the day.
- Wednesday: Morning meeting with Dr. Silverstein to remove packing from ear. Followed by all the same pre-op testing in the afternoon.
- Thursday: Travel day, fly home.
COST
I've heard of numbers between $8,000-9,000 USD if paying out-of-pocket. I was elated to be notified by the hospital staff prior to scheduling that my insurance covers the surgery so my total out-of-pocket for office visits, anesthesia, surgery, etc. was only about $1,300. Most of this was simply a factor of hitting my deductible so everyone will be different depending on their insurance policy.
SURGERY DAY
Dr. Nayak does the majority of procedures nowadays while Dr. Silverstein supervises and Dr. Kim there as well. This surgery only allows for one ear to be operated on at a time because they have noticed that the non-operated ear also improves but they do not know exactly why. My guess is that it has to do with the brain trying to equalize your neurological equilibrium so it tells your other ear it's okay to increase its tolerance. I elected to have my right ear operated on as it has always had the worse symptoms of hyperacusis and tinnitus. After waiting 6 months after the first surgery, some patients return to have the other ear operated on as well.
I was the first operation of the day and arrived at 5:45 am for my 7:00-9:00 am operating room block. I was taken back by the nurse to change, take vitals, install IV, and set me up on the rollaway cart. This takes a little bit of time to get fully prepared. Dr. Kim, the OR nurse, and the anesthesiologist all paid me a visit to chat before heading into the OR. I wore earplugs during this time (and glad I did) because this prep area has many staff and patients around with medical machines beeping frequently as well. I kept these plugs in until just before anesthesia in the operating room. Once in the operating room, I was positioned on the OR table and given oxygen. That is my final memory before going under and waking up two hours later in the recovery area and greeted by my brother. At this point I was offered snacks and drinks while the nurse was monitoring my pain levels and providing me with pain pills. The only period in this whole surgery where I had pain was the first 45 minutes in recovery upon waking up. I wouldn't even describe it as real pain, but just enough pain where you're slightly uncomfortable. The pain pills kicked in and brought me back to a comfortable state. Surprisingly, the external skin tissue extraction wound was more the source of discomfort than the operated inner ear itself. After my pain levels were stabilized, I was able to walk myself out of the building and into the awaiting Uber back to the hotel. From waking up in recovery to morning of the next day, there is a cup over the operated ear secured with a velcro headband. Under this is gauze patches, then a cotton ball on the outer ear, and finally the plug deep in the ear canal. Back at the hotel, I rested in an elevated position for pretty much the rest of the day. Throughout my trip, I tried to eat soft foods to not disturb the inner ear with crunchy vibrations and also food that doesn't require opening your mouth too wide as the whole side of your head has been freshly operated on. All pain had subsided by the next morning. I was given a prescription prior to surgery for pain if needed but only took one tablet in the 24 hours following surgery.
RECOVERY
The dull but extremely important part of the trip. Sit and do nothing for a whole week. Eat, sleep, repeat. My brother was key in keeping me comfortable and fed. Directions were given to change out the cotton ball from the outer ear as it catches blood and drippings. I changed the cotton ball every couple days and the bleeding had for the most part stopped around day 3 or 4 after surgery. I also gently, and I mean very gently, cleaned some of the blood out of my ear with my fingertip under a tissue from the visible outer ear canal. I stayed at a hotel downtown on the 7th floor. It was a comfortable stay being high enough away from the road. The downtown area really isn't loud if you can get into a high up room. The Silverstein Institute was only 2.5 miles away and Uber's were easy to catch. I prescheduled my Uber to the early morning surgery to ensure my arrival.
The following Wednesday after the long week of rest, I met with Dr. Silverstein to remove the earplug I had in all week. Immediately following this removal, it was time to test my new ears to see how we did!
RESULTS
My pre-op LDL's tested the day before surgery showed better than my previous testing done at the clinic I did TRT through. My belief is that the testing method involving multiple rounds per ear provided the confidence to really try hard to get good numbers. My LDL's in both ears averaged mid to high 60's with some frequencies in a given round topping 70 dB. These LDL's felt more along the lines of what my ears felt like they're at so I was happy to see that.
I took the LDL test a week after surgery to discover that I responded tremendously well to the surgery. My average LDL dB increase in my right (operated) ear was 22 dB from 67 dB to 89 dB. My left (non-operated) also showed a healthy increase averaging 15 dB from 68 dB to 83 dB. I believe most of the success was due to my stapes being hypermobile and that being one of the main areas targeted for reinforcement. I was blown away and emotionally taken back. After everything that has happened the last 3 years in my life from these disorders I finally felt extreme joy. Later in the same day I met again with Dr. Silverstein and Dr. Nayak and both were very happy with the results.
SIDE EFFECTS
- Hearing loss - My operated right ear lost some hearing in the higher frequencies to the point just considered minor hearing loss. Dr. Nayak said I probably won't even notice it after I've fully healed.
- Fullness - Immediately upon Dr. Silverstein removing the plug after the week of rest, a feeling of fullness consumed my operated ear. It was shocking at first, but justifiably different after a surgical operation. Both doctors said this would subside in about 4-6 weeks.
- Taste - A very minor but still to be noted side effect was a change in taste. This change in taste will last roughly two months. It was described to me as a "metallic" taste and I personally would describe it as a slightly burnt tongue. When you bit into something or drink something that was too hot and a few taste buds on your tongue feel numb or dead is the closest feeling I could equate it to. This is not major though and you will still be able to enjoy food.
Writing this post, I am nine days post-op. My main concern is the feeling of fullness subsiding on schedule in the coming weeks. I will update as my symptoms improve. Secondly, I am closely monitoring my tinnitus levels and reactivity. Overall, the surgery has not affected the tinnitus one way or another although I may be perceiving it slightly different due to the fullness in my right ear.
