Otosclerosis

[sir hills]

Hey Folks,

I haven?t seen any info on the TOMB about otosclerosis (a genetic disorder which causes hearing loss due to the bones of the ear stiffening) & thought I might share my recent experience.

I was diagnosed with otosclerosis about six months ago after suffering from distortion at certain high mid frequencies & more than moderate listening volumes followed by loss of hearing, all in my left ear. I started the process by going to my regular Dr. who immediately called it a sinus infection & prescribed antibiotics. After I finished the 10 day antibiotic cycle & had no change, I went back, they did a blood panel & sent me to the local ear nose & throat specialist. The first specialist ran many different tests & concluded that I had about a 25% loss of hearing & since the drum was intact, felt that something was in my ear pushing against the drum or bones & keeping things from vibrating properly...like a tumor. ugh. He set up a CT scan of my head & my wife & I spent a couple weeks totally freaked out waiting to have it done, then waiting for results. Fortunately it came back clear & everything appeared as it should, same with the blood work. I went back to the specialist?s office but the original Dr. I met with was on vacation for a month so I spoke with a different Dr. & went over all the various test results. He told me ?Everything looks to be in order but it appears you?re rapidly going deaf in your left ear?....uhhh, yeah, I?ve figured that much out, Sherlock! I questioned him more about what could be causing it & possible solutions but he was quite antsy to get out of the room & essentially told me a hearing aid would be the best solution. When I asked for a second opinion he said there was a guy in Albuquerque (an hour away) that only works with ears & is supposed to be the best in the state. We found the Dr. in Abq. & set up an appointment. We brought in all the test results & images I had collected so far & he ran another series of tests & within an hour diagnosed it as otosclerosis.

He said most people will just live with it or offset it with a hearing aid but since I was professionally playing & recording music I might consider a surgical procedure called a stapedectomy. This is an outpatient surgery performed through the ear canal where he would sever the eardrum, go in with a laser to sever where the bones have stiffened/bonded, then install a prosthetic to allow vibrations to move freely. He?s done thousands in his career with a 96% success rate of regaining close to 100% hearing in his patients & he also helped develop the laser that is used for cutting! In general, he was very to the point & no bs but also very patient with our questions & forthcoming with answers. The surgery itself only takes about an hour but it would have to be performed at a hospital & I would have to be put under...all things that add to the total cost which comes out in the $15,000 range...ouch. The other big consideration is that it?s roughly a two month recovery period with the first week being mostly on bed rest followed by a slow buildup back to everyday activities. For the first 2-4 weeks it is recommended to not lift more than 10 lbs, avoid strenuous activities & refrain from blowing my nose or any activity that might cause too much pressure to the head. I?ve had to learn how to sneeze with my mouth open & try to keep the pressure focused in the chest & throat! Hearing can take up to a full year to completely come back but the Dr. assured me that once the eardrum has healed (3-4 weeks) I would be able to start back to audio work & would already notice a huge difference, mainly that the distortion would be gone but that I would also regain some of that 25% loss.

My wife & I did some research for a few weeks, spoke with our insurance co. & decided a stapedectomy would be the best route. We set up the surgery for late Dec. so that I could recover over Jan./Feb. & be able to do more physical work in the spring. I do quite a bit of location recording jobs as well as some carpentry work on the side so the surgery would put a major damper on those activities. Fortunately, I don?t do as much of that work in the winter. Immediately, we knew we would be responsible for a big chunk of the cost, we do have health insurance but it has a high deductible ($5000). I spent the late summer/fall working like a madman, taking every job I could, - recording, live sound, carpentry, furniture moving...ANYTHING & started putting money back to cover surgery as well as my part of bills/food etc. while I would be recovering & pay off some minor debt. I also sold a few pieces of audio gear, most of which sold right here in the ?buy sell trade? section of the TOMB. Though it was a stressful final half of the year, we came out of it feeling more secure financially which has already gone a long way. I also had three albums to wrap up that I played on, engineered & co-produced (two of which I?ve been working on for a year). I managed to finish them all properly before the surgery, they?re all slated to be professionally mastered & I will come out of recovery with a clean slate, which feels pretty great as well. I also have to mention that they are three very different sounding/feeling albums, all of which might be the best work I?ve done to date & I am quite proud of.

So, here I sit just a few days after surgery & am in good spirits. The surgery went very well, in fact, the Dr. found that he was able to cut away the deposits on the bones & free them so that they move properly on their own. Since we caught it early there was no need for a prosthetic! Of course, I will always have otosclerosis so it could come back or form in the other ear but the Dr. feels confident it would be many, many years, if at all. The first day I had some pain in my ear/head but that more or less subsided by day two. My body is a little sore/stiff & my lungs hurt for a couple days but all is passing & I?m just trying to take it easy. Right now the hardest/most discomforting things are having packing in my ear, a bit of vertigo , not being able to sleep on my left side & not being able to lift our 12 lb cats! I?ve been putting off watching Game of Thrones & have been wanting to read Patti Smith?s ?Just Kids? so now?s the perfect time to catch up & do some things I might otherwise choose to put off as frivolous! I?m also hoping to start writing/arranging songs toward another solo album!

I?ll update my progress on this post & if anyone has thoughts/questions, please feel free to reply to this post or send a pm!

[Gregg Juke]

Congratulations! Glad to hear that all is going well. I have a friend who has had that done twice; once years ago when techniques were not nearly as advanced as they are now, and once very recently (a few years ago). She is a singer and of course, hearing is very important to her too. Everything works great in that ear now!

It sounds like it's time for the cats to go on a diet...

GJ

[sir hills]

Thanks for the good words, Gregg! Glad to hear it's worked out for your friend. Doctors used to use titanium or platinum for the prosthetic but found that over time metals can wear down the bones they are attached to. They also caused problems with MR scans & also hold folks up at airport security. Now they use silicone or fluoroplastic materials which have better longevity & success. I meet with the Dr. in about a week & hope to have more details about the "clearing" that he performed on me. And it'll be another month before I can have a full hearing test.

Oh, on the cat front...our guys have been on high fiber diets for about 8 years now. Rocky used to weigh 20 lbs so we (& he) are quite happy to have him down to 12! It took about 5 years to get him to a healthy weight...but, I guess that's a story for another thread. If anyone needs tips for putting cats on diets & maintaining, please pm as I have a wealth of info.

[vvv]

Congrats on the good result, and best wishes for a speedy recovery.

Outta curiosity, are the charges less in that there's no prosthetic implant?

[ott0bot]

deezang mang. glAd you are on the mend. thanks for sharing your story

[sir hills]

Thanks for the well wishes guys! VVV - I'm not sure how much of a difference there would be between my "clearing" & actually getting the prothesis. I'll definitely put that on my list of questions I'm currently building for the followup. The Dr. was prepared to install the prosthesis so I trust that his decision to not put it in was preferable. In my mind, I imagine my body will likely have a better chance of healing & healing quickly without something foreign in there. From what I've read, many people who have the prosthesis installed come out with more sensitive hearing as far as general volume & with higher frequencies. But, I've also read that some people have heightened hearing focused in the 500hz anywhere up to 10k with drops below & above. My Dr. thought he could get it close to 100% but that "close" might mean a focused area with slight drops above & below. So, I suppose (& am hoping) having a cleaning & going "natural" might also keep my left/right specs closer.

I have noticed that I can hear the packing moving around in my ear as well as the resonance in my head when speaking or when I rub/touch my head...in the recovering ear. I'm taking that as a good sign, that the bones are in tact & passing vibration/info to the brain. It will be interesting to see the results of hearing tests over the next year & how my ears compare!

[Smitty]

Hooray for science!

Glad this worked out for you. Best wishes for a speedy recovery.

[the finger genius]

Wow, that's quite a story. I wish you a quick and complete recovery.

[sir hills]

Thanks again for the well-wishes!

I had the post-op followup last week & am happy to report things are going great. The Dr. filled me in on the details of what he did during surgery & why. Basically, when he got in there he found that the anvil had grown an elongated piece of bone that was depressing the stapes, keeping it from moving properly & causing the distortion I was hearing. Fortunately, the bones had not joined & he decided to simply laser away the elongated bone. This freed the stapes & he believes the bone will not grow back out...if it did it would be many many years before I would experience related issues. SO, it's not necessarily full on otosclerosis...maybe the beginnings of it, but we caught it early enough that it was easily righted.

They removed the packing from the canal & found that the drum membrane has already healed over & things were looking good in there. My inner ear has fluid in it at the moment so everything's a little dull & boomy in that ear. It should drain & the drum should be fully healed in a couple weeks to a month. At that point I should have a pretty good idea of how well the surgery worked. They did a few tuning fork tests (exterior & then also pressing against different areas of the skull for vibrations) & the bones seem to be working properly. They won't do a full set of tests for 3 months to insure proper healing & drum thickness. At any rate, the Dr. says I'm in good enough shape to start working back up to everyday activities, heavy lifting etc. & given that there's no prosthesis in there/no bones were separated, I don't risk damaging anything. Since I won't have my full range of hearing for a bit & since I can do physical work, I've decided to use the down time to do a remodel to my humble home studio & take a few better paying carpentry jobs to pay the bills. Hope to have my head & space up & running by April or May.

VVV - I had misread your last question about CHARGES...I read CHANGES! Still on meds at the time! Anyhow, yes, it will be less since I did not get the prosthesis. We've already received a notice from our insurance co. breaking down the hospital charges, what they (ins.) paid out, what we should owe & we found that the hospital now owes us about $800 back from what they made us pay upfront! I get to work on tracking that down today...should be fun. We won't see the anesthesiologists bill or the doctor's bill for another week or two. The Dr. told us from the start that his would be minor compared to the rest (in the 2-3 grand range). The hospital's bill was almost 12 grand for the 4 hours I was there...wtf! Anesthesia will likely be in the range of the doctor's bill. We'll see how it all ends up with total cost.

Anyhow, I'll continue to post progress as I heal & will try & post some shots of the remodel in the DIY forum.