Help Me Hear Again...
I had a sudden loss of hearing after a Traumatic Brain Injury.
I had a severe traumatic brain injury with brain hemorrhage August 2017. I remember nothing of the four days in the hospital or the three weeks after that. One of the results of the injury was that my hearing was impaired significantly. However at that point I could get by. BUT more alarmingly, on April 2018, my hearing suddenly started dropping PRECIPITOUSLY
. Seven weeks later, many areas had dropped by 35-40 Decibels. And it kept dropping, fast. Some frequencies I did still have 55% hearing. The worst areas I had only 20% hearing. May 30th I saw Dr. John MacElveen, who headed up the Otology/Neurotology program at Duke University Medical Center for six years.
He gave a diagnosis based on my symptoms, audiology reports, and CT scans. Superior Semicircular Canal Dehiscence: https://en.wikipedia.org/wiki/Superior_canal_dehiscence_syndrome
But the surgery may not increase the hearing, and can cause total deafness. He urged me to try several complimentary modalities for 3-6 months to reduce the residual pressure/inflammation from the head injury, and to resolve contributing factors. By June 4, I could no longer hear the creek that runs below my house and I could barely hear the harp.
The bass was inaudible and the rest muffled. Some notes sounded as much as 7 notes higher than they really were, and if I tried to play, I got dizzy and nauseated. The medical term for this is diplacusis.https://www.healthyhearing.com/report/51055-Understanding-diplacusis
The silence was profound. I needed to get within inches of my grand daughter's face to hear her. Telephone conversations were impossible. But now there is hope.
Dr. MacElveen wants me to do any legitimate complimentary medicine that might help avoid the surgery. These will take time and are not covered by my insurance. Here are the 4 positive modalities:
1. Acupuncture performed only by licensed practitioners who are 4-year graduates of Chinese Medicine/Acupuncture school. Twice weekly.
2. Functional Neurology chiropractor (13 years of post-medical school training). (To address the neurological components and also damage to 8th cranial nerve from the head injury). Four times weekly.
3. Lymphatic Drainage Massage (to reduce pressure and inflammation). Once weekly.
4. Huge amounts of Curcurmin, (which acts similar to prednisone but with no side effects).
Together these are costing around $2,800 per month. These have NO risk of making me go deaf, like the surgery. And so far, they are producing the first positive results I've had. There are lots of ups and downs, but real progress.
Already these modalities have stopped my hearing from dropping any further. There is even improvement.
I can now sometimes hear the harp enough for it to be beautiful, without nauseating distortion. Then I had two days of scary setback, but rebounded. I can often understand a phone conversation. And listen to the radio and make out much of what is said. Understand my grand daughter some. This is all progress.I want to hear again.
I love the harp. I love writing beautiful music. And most of all, I LOVE helping people by teaching, making free videos for YouTube. It's fulfilling to encourage folks and see them grow.If you want to hear a short tune on double strung harp while you read...
My student Nancy Beal wants to add:
"People need to know your contribution not only to the harp world... but to the double strung harp world in particular. The MANY free videos you have done... the time you have spent helping develop and promote the double strung harp so it is heard and appreciated out in the world... and the countless hours you spend developing music to take full advantage of the double strung's amazing capabilities. I could go on and on and ON.
You have helped so many of us, with thousands of hours of your time you have donated to encourage us to embrace all harp, and this particular kind of harp even further. Using the double strung harp in health care is monumental and has changed the way I play in my work in hospitals."My goal has always been to make the world a better place.
Now I realize how important sound is for that. I have ideas for at least 300 more free teaching tutorials that I want to record. My grand daughter needs me and I need to hear her sweet voice. Laila and Grandma, together 20 hours a week!
Efforts up until the GoFundMe started...
Four days in hospital after brain injury; CT scans. Local audiologists, ENT’s. Prednisone, antibiotics, fluid suction. Functional Neurology chiropractor. Prayer, visualization. Best hearing aids made (didn't work with this type of hearing loss - had to return them). Chinese medicine. Curcurmin (natural anti-inflammatory). Craniosacral therapy. Dr. MacElveen.Next steps.
I am on track with the leading edge modalities which have already shown promise, even though these are not covered by my insurance. I dropped some of them this fall as my funds ran lower and I started to dip into life savings. So now it's the acupuncture and tons of natural anti-inflammatories, and I think that's an ok holding pattern, because:
I found out that I have Eustachian Tube Dysfunction which is causing a certain percentage of this hearing loss and may be corrected by an expensive medical procedure that is covered by insurance (my copay is only $1,400 if I pay everything up front to get the 25% discount.) January 18 is the big day!!!At the Southeastern Harp Weekend conference a few years ago.
I have Nancy Beal to thank for getting me started with a “go-fund-me” campaign.
And YOU all are giving me the FUNDS, and HOPE, to move forward. I am still incurring expenses but not digging too deep into my life savings yet. THAT's because of your wonderful help!! You guys are amazing.
Nancy and I just re-organized the goal slightly to help me through the January operation without digging too hazardously into life savings.Your help will, I fervently hope, bring me back to our world of sound.
I'll definitely send progress reports. We are all connected. Thank you and love to you all.