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Looking for continued input for SSHL
have been trolling this site for about five weeks now. I’m very grateful for your input in every post. Six weeks ago I had a total knee replacement. I went home the day of surgery and was doing well. It was 24 hours almost to the minute when I stood up to go to the restroom and had to sit back down because of sudden and acute dizziness. The dizziness was something I had not experienced before because instead of the room moving something inside my head moved. A very strange sensation. I immediately heard a noise in my right ear and I became nauseous and started to throw up. This lasted about 16 hours. The next morning, I still had the ringing in my right ear and I realized I could not hear in my right ear. I was able to get in to see the ENT the following day. So 48 hours after the first symptom, I started prednisone for 10 days. I was completely deaf in my right ear. The tinnitus was a loud waterfall. The vomiting had passed, but the occasional nausea remained. The ENT felt like, in their experience, It was always due to some unknown sudden viral infection. Nothing could be proven and no medicine was ordered for a viral infection. An MRI was ordered, but it was a week before I could be seen anywhere. Meanwhile, I came home and started looking up SSHL post total knee replacement. And there is documented literature of this happening after a total knee replacement. There’s also documentation of this happening after spinal anesthesia. I had spinal anesthesia and a knee replacement. The idea after the knee replacement is that you threw a micro fat emboli which is also never proven. The idea behind the spinal complication is that it was a combination of a disruption of cerebral spinal fluid and hypotension. I feel like the later two explanations were more reasonable in my case. I also received one dose of vancomycin, which has been noted to cause hearing loss but typically not with one dose. The treatment options seem to be prednisone by mouth and Decadron tympanic injection. I had both. Other options were hyperbaric oxygen treatment, but Medicare would not cover this. The MRI proved to be negative. I think everyone knew that it was going to be negative. So my hearing has not come back but what I’m writing about today is the Revelation to me of what it’s like to be deaf in one ear and have tinnitus. It has been very humbling. I no longer have any sense of direction for where the sound is coming from. The sound could be coming from behind me and I think that the sound is coming in front of me. Absolutely no idea. The left ear has a hard time hearing over the noise coming from the right ear. And as the group already knows the noise is in your brain, not in your ear. The other odd thing is that my right ear and the right side of my face feels numb, but it is not. The tinnitus is such a light sounding word for such a troublesome condition. It is not just a single noise. It can be a waterfall or it can be ringing. But it is also other noises super imposed on that evolving background noise. For instance, if someone talks loudly, it actually vibrates and echoes in my ear at yet another sound level. If someone hugs me on my right side, it squeals like my hearing aid is off position . And sometimes the shrill whistle is so loud I can hardly bear it. It is very humbling. I realize there are many worse things in the world and I realize I am blessed. Nevertheless, I’m very concerned as I read that people with hearing loss have a higher incidence of depression, dementia, and less socialization. I am concerned about driving. It is life-changing. The ENT is not encouraging. They say that Medicare doesn’t often cover cochlear implant- and cochlear implant may or may not help the tinnitus. I realize there are a few other options to try that appear to be hit and miss. Anyway, I am happy to be in this group and I will continue to look forward to input from other people who are dealing with this condition. Best regards to all.
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kathymann2184, thanks for this fascinating post. Hoping you'll find resolution.
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1 ReactionYour story is very interesting. I had never heard of this being related to total knee replacement before. Of course there is a lot of information out there and a lot of research topics. It's always interesting to learn more.
I'm surprised that an ENT would tell you that Medicare doesn't cover the cost of cochlear implants. In most cases, if a person is a candidate for a CI it is covered. Most insurers cover CIs too. Hearing aids are not covered by Medicare and rarely by insurance, which is a shame. Advocacy groups have been trying to change this for decades, but many more loud voices are needed to join the chorus.
Hearing loss tends to be minimized and referred to as an inconvenience until one has it themselves. It's stressful and isolating and yes, it can lead to reclusiveness and depression. It also affects the people we care about.
It helps to meet other people who live with hearing loss. MCC is a great place to start. Openly meeting and talking to other people with hearing loss validates those feelings of frustration and also shares an opportunity to hear other people's experiences goes a step further.
I encourage you to check out the Hearing Loss Assn. of America(HLAA) to see if there is a chapter of the organization meeting near you. Involvement in this organization pretty much gave me my life back when I felt my hearing loss issues were destroying me. http://www.hearingloss.org
I hope things improve for you. Tinnitus often diminishes and/or goes away completely. However, it's unpredictable.
Know there is hope for your condition.
Julieo4
Julie, thank you. I will follow your advice and continue to talk to others. I am at my wits end. It is true, even I had thought of hearing loss and tinnitus as more of an inconvenience. Now I find that it is life-changing. Kathy.
I feel your discouragement. Question: how is the hearing in your left ear? You mentioned a hearing aid. Is that something you’ve had for your left ear before this?
I’ve had SSHL no known cause, about 8 yrs. That experience of not knowing where in space you are is unsettling to say the least. My husband has learned- sort of - not to call me from afar. It’s so distressing to turn 360 to find him. I have a hearing aid for the good ear with a microphone for the left (bicros) but rarely use it. My tinnitus is also loud, seems worse after air travel, or unavoidable loud noises. Wish I had an answer for you.
I appreciate your response. I have started looking on Facebook too. I didn’t realize there was a group there and that is helpful. I don’t have a hearing aid, but I do know when someone gets their hearing aid offkilter it makes a shrill noise that everyone in the room can hear. It was that shrill noise I was referring to and it is simply because someone is hugging me on that side! The Facebook group has given me some encouragement because there are a lot of newcomers who are trying to cope as I am and a lot of old timers that are offering encouragement. It’s a good place to have landed for now.
Kathymann2184
December 4, 2018 was life changing for me. Your description of your hearing loss is almost verbatim of my experience, except I did not have knee surgery. Days before, I had a significant hit on my head with a car door, and I also had recently had a sinus infection. The theory was a virus or maybe the head hit contributed, but nothing was ever determined as to the exact cause of my SSHL. I was preparing food, and heard like a pop, then a sensation like you get when you have when you have a bad cold and the ear stops up. I carried in with my day and woke up the next day with the severe vertigo and nausea. I live alone had to crawl for two days until the vertigo tapered off enough for me to drive to town to the doctor. The sent me to PT and did a referral to the ENT which was a week later. They did the steroid shot, an MRI and 10 days of steroid pills two separate rounds. The damage was done. I totally understand what is like to not know where sound is coming from and turning in a circle to look. The tinnitus is constant to this day and changes frequency many times a day. I tried many things in the next few months. I grasped at every article and study I could find. I even did acupuncture for a couple of months all to no avail.
Now, that is the bad news. The good news is that I relocated to the DFW area right at the height of Covid. I made an appointment with an ENT here still looking for answers. They performed a conductive hearing implant of a Cochlear Osia 2 which has allowed me to function much better. I can tell which direction sound is coming from and it makes the other sound a little clearer without overwhelming my good ear. My right ear has no hearing capability whatsoever, but the processor that sits on a magnet in my bone carries sound to my left side. Research it. Medicare did cover it. At the time they were not covering Cochlear implants, but they do now in certain circumstances, so that is another option for you. Research the none conduction Osia 2 versus the Cochlear implant. Both products are Cochlear brand. Another option is the cros hearing aids where you wear a hearing aid that directs the sound to the second hearing aid in your good ear. I was not a good candidate for that method due to abnormalities in my outer right ear that prevented the hearing aid from staying put.
At any rate, you may never completely figure out the cause, but you can move forward to a solution. I still cannot be in extremely noisy situations like noisy restaurants, but the Osia has definitely made my life better. You just have to get used to closed caption TV and even some movie theaters are accommodating. Life is still good, just different. Of course I have had almost seven years to get used to my new normal.
That is supposed to be bone conduction, not none conduction Osia 2.