Did you know you can go suddenly deaf? I'm serious. Suddenly. Like you wake up one morning and one of your ears has gone completely silent. Except for the ringing.
For once, this health crisis wasn't mine.
A few weeks ago my husband, after having suffered no sign of illness whatsoever, awoke one morning to find that he could hear nothing in his left ear. Nothing. Not my ever sonorous voice, not the dog begging him to play, not the car alarms that steadily ring out in front of our house. Assuming it was an infection he called his internist and saw him that afternoon.
The possibility of never fully hearing music again devastated Hooper. It was days before he would turn on the stereo. Even longer before he dared put on a pair of headphones. With no directional hearing, he felt lost in the world and a little unsafe. Imagine standing on a street corner surrounded by the whoosh and hum of traffic, crowds of chattering people, the insistent sounds of construction, without the ability to place the source. Worse than the lack of hearing was the tinnitus, an incessant cacophony of whining, whirring, and "fax machine" screams that often overwhelmed what he could hear.
What revelations about his condition were revealed to us, doctor after doctor? Not much. It's one of the apparently many things that can happen to the human body about which little is known. You just have to throw things at it. He was given anti-virals as there's a possibility the condition is caused by HSV-1, oral herpes. Since the majority of Americans carry this virus, the majority of us may be at risk of SSHL. He was also given Prednisone to quickly knock down the swelling in an attempt to reintroduce blood flow and restore his hearing, but it had no effect after a week of treatment - another fact that left the docs doubtful.
And then I watched them stick a needle in his eardrum and inject cortisone. I am not in any way squeamish about blood, guts, or the like, but Ew.
After several days, his hearing started to return. He hid this at first so as not to raise my hopes too high. Then he told me, and I didn't believe him. I made him cover his good ear as I spoke at different volumes into the bad one. He began to make out words, and as the days passed, he continued to improve. Another audio test revealed that he was still deficient in some frequencies, but much of his hearing was almost normal. The doctors were pleasantly surprised, finding each other in the hallway to share the news and clap Hooper on the back.
It's been two weeks since the injection, and he still has some deficiency and some ringing, but he's worlds better off than he was. There will be more tests to search for the cause, and he may get another injection in his eardrum.
I think I will sit this one out.
20 comments:
Hope the hearing continues to improve, I can't imagine how it must feel to wake up deaf. I've had a progressive hearing loss since I was 5 years old, it started off fairly mild and now I can't really hear much at all with my hearing aids - at least I've had years to get used to it!
I am certain his hearing will improve and/or his other ear will compensate to a point where he won't notice any difference. As for the ringing and whatever noises, they'll disappear one way or another - and if not, they will become too boring to notice after a while. Been there, survived it and while I am not a better person for it, at least it didn't make me a worse one.
Patience, don't dwell on it too much and maybe some rest and holiday??? Always helps.
I will share both of your comments with him... thanks for your kindness. He's one tough cookie, and despite his initial devastation, he has approached this with awe-inspiring strength. I could definitely take a lesson!
Steve, your website looks incredible, and I'll pass it along as well. It looks like you've taken an amazingly proactive approach to your condition! Looks like a fantastic resource.
This is an incredible story. I've always been afraid of heating loss. My mother has always (and still does) yell at my grandma to have even the simplest conversation. Now as we all age I find myself starting to raise my voice at my mother but can't bring myself to let her know that that's what I have to do.
I know this isn't medically the same thing but as a matter of fear and instinct it pretty close. It's truly very scary.
I'm glad it has improved for your family.
Jen, your blog could not have come at a more perfect time as I was diagnosed with SSHL on Thursday.
It does leave you devastated. I wanted to know if I might be able to speak with you or your husband to find out more about the injection treatment. I know this is all very time sensitive in treatment. I am on mega prednisone now but want to be ready for the next step should it become necessary.
Your blog was truly delivered at the right time. I was fresh from the doctor's office.
Again I won't be a pest but I just want to be prepared and restore whatever hearing I can.
Please feel free to contact me any time.
geoff315@hotmail.com
I will be happy to give you my phone number.
Many Thanks,
Geoff Godfrey
St. Petersburg FL
Hey Geoff - You're not a pest! I'm in the process of replying to your email. I just need to confirm some details with my husband. I will get back to you later today. Hang in there!
Jen
Thank You Jen.
On a bright note, I LOVE your work. Your talent is amazing. So inspiring. I look forward to seeing more of your work. Thank you for brightening my day with your work and taking my mind off this crazy week.
I look forward to hearing from you. And please give a big thank you to your husband too.
Kindest Regards,
Geoff
Jen, I've just come across your blog as I have been recently diagnosed with SSHL myself. Do you know how many days after the cortisone injection that your husband's hearing started to return? I've been on the oral steriods and had an ear injection on Monday with no results yet. I'm glad to hear your husband has improved and hope I will have similar results soon!
Leah, I was diagnosed with SSHL as well. I have been on prednisone 60mg for 7 days with 7 more to go. I did an injection on Friday (9/21). So 5 days into the oral then tried the shot. Had a hearing test today & everything is the same. Jen's story gives me hope that maybe more time is needed after the 1st shot. I have moderate to severe loss in my rt ear and like almost everything I've read, mine happened pretty consistent with everyone else. I woke up on 9/12 with a fullness & pain in my rt ear. Started pred 5 days later after going to 2 drs. Then did injection on day 5 of oral pred - on Sept 17. It's devastating & equally so because you read so little success stories. Let me know how you do & I will do the same. Wishing you some relief!:)
Hi Leah - He began to have improvement after four or five days. By two weeks after the first injection, his hearing had improved by about 75%. He had a second injection at that point and had some more improvement. The ringing remained throughout, though it was less notable after the hearing came back. It's been well over a month, and he believes his hearing is worsening again, so this may be a case where he will have to get another injection or other follow-up treatment. Feel free to email later to check in. I really hope the injection is helping! Don't give up hope!
Thank you so much for responding. It does give some hope & perhaps maintaining a monthly injection may work. I go for my 2nd injection on Thursday and it will be right at the 2 week mark since I started the process. I think I speak for everyone, the constant tinnitus is maddening.
Sari and Jen, my prayers and sympathies are with you and your husband! I had an appointment on Monday which still showed a profound hearing loss in my left ear, although I had slight increases (5-10db) at certain frequencies. I had another injection that day and since then I feel that there continues to be slight improvements. I can hear the wind blowing in my ear, still distorted, but a new improvement. My next hearing test will be in a week from today and I am hoping and trusting that God will provide even more healing by then.
Leah,
That's wonderful news! I also hope you continue to find improvement. My husband went back for another hearing test yesterday to find that his hearing has not worsened, but the doctor told him that after the injection into the eardrum, it can take awhile for the fluid level in the ear to find balance once again, which can make it seem he can not hear as well. They will do a fluid level test next week with the possible addition of a diuretic to hopefully restore balance. It seems maybe he will never get back to his normal hearing, but he is happy to have gotten this far.
I hope you will all come back and update as it turns out we now have a mini-forum here that may be of help to others in the future. Best to all!
Also, if you are on Facebook, there is forum where you can find others' stories and perhaps share your own:
https://www.facebook.com/pages/Sudden-Sensorineural-Hearing-Loss-SSNHL/122181117819259
Hi Jen, I was actually thinking about your husband today & had hoped there wasn't going to be any additional loss. It's wonderful to hear there wasn't. I had my 2nd injection today & the hearing test showed a small improvement in both low tones & high frequency tones which is where my loss is more prominent. I can't say that I really notice other than sounds have appeared cleaner. I don't hear the robotic voices I did initially. I will have a 3rd next week & ideally will do a 3rd injection if there continues to be improvement even if it's small. I am no expert but I have to believe given the severe nerve damage this causes, healing takes time. I am seeing an ENT at Duke & he did say today that he has seen people improve beyond the medication phase. So my prayers are that this is the case for all of us. Please keep in touch & let me know you all are doing. Perhaps sharing strategies we find that work would be helpful. On that note, I seem to struggle most when there are a lot of outside noises like at the gym or grocery store so I'm experimenting with trying an earplug to help muffle the loud sounds that are coming in. It's like sensory overload for me. I'll let you know how it works - although I may be the only one having this issue. Thanks for writing & you are all in my prayers. Sari
Jen, yes, what a relief for your husband that his hearing has not worsened! My prayers are for his continued recovery over the next weeks and months.
Sari, I'm glad you are noticing improvements! Yes, for me loud environments are pretty overwhelming. I asked the audiologist about using an ear plug and she said it was okay to use sometimes but it is better to let the ear become acclimated overall. I tried and it didn't really seem to help me, but let me know how it works for you. Many prayers for your healing as well.
Hi , Jen - thanks for this blog & best of luck to your husband... I was diagnosed with SSHL on 10/18 after waking up from sleeping with 0% hearing in my right ear. I went to the ER the same day (in Boston) and was on 60Mg of Predisone. I then flew to John Hopkins and tried to get a second opinion. There i was given the same diagnosis , but with a little more hope ... I was given the shot in parallel. I had 4 shots and have now finished the oral predisone.
I have about 10% hearing , not enough to figure out words & not much hope for improvement... & also the Dr. told me there is a 1-10,000 chance it could happen to my left ear... I learned it is very important to go the first 14 days.. so please do that - if you are reading this for the first time! I thank the Lord for the health I have - which is pretty good otherwise. This ringing sucks, but I will learn to live with it ... Thanks again! - Mike
Hi Mike - thanks for coming by, and I'm sorry I'm seeing your comment so late. Have spam protection on for old comments. I really hope you've had some improvement since November. My husband was very very lucky in that he got back about 90% of his hearing after the shots. The doctors were actually really surprised by the outcome. I know it's a really difficult thing to deal with, but having been ill myself with chronic pain throughout my body for years, I now know we can almost get used to anything. Would I do just about anything to be "normal" again? Of course, but I know that I am handling my limitations a lot better than I was a few years ago. Whatever happens with you, just know you will wake up one day and realize you pay a lot more attention to what's good than your ear! Best of luck and let us know how it turns out. So glad this post has turned up some people dealing with this strange and awful affliction. Jen
I am a 21 yr old girl and was diagnosed with profound sensorineural deafness in my left ear,severe vertigo and tinnitus 3 days back along with mild deafness in my right ear.i live in india.the doctors did all sorts of tests and the cause was not to be found.they even expressed very little hope of improvement because of my profound deafness and the incapacitatingly severe vertigo.i spend my whole day in bed as i cant sit or stand.if i try to i feel someone's knocking me off and fall.i was perfectly healthy before this,going to complete my graduation in 2 months and fly to the usa.i suddenly woke up 3 days back being unable to hear in my left ear and dizziness and vomitings.though i went to an ent surgeon immediately,i had to hear all this bad news.at present my vertigo troubles me more than my deafness but my family is totally devastated with the whole thing.may be i ll also be Later..At present i am on steroids(deflacort) and betahistine tabs.
Before anything else, I just wanna say what an amazing artist you are! You take amazing photos and I just love all of your work. Sorry to hear about Hooper’s sudden loss of hearing. I sincerely hope he’s part of the lucky 85% of SSHL patients who recover within days or weeks from the condition -- with or without medical intervention.
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