Round and Oval Window Reinforcement for the Treatment of Hyperacusis

Sweet ! hope you go for it and it works !

 

Dr. Silverstein just called me...Super nice guy and matches my "a real, caring doctor" vibe from the video.

I am being sent all the forms in the mail to apply for the treatment. If found acceptable...

~ It will require me being in Florida for a week.

~ There will be three tests:
1. Overall Hearing test.
2. Loudness Discomfort Level test.
3. CT Scan of ears.

~ Surgery is done one one ear only. The second ear is done at a minimum of one month later, so a second trip is required for that.

~ Paying cash cost is unknown. They have not worked that out yet, as all patients to date have had insurance or Medicare. *(Generally there is always a discount for cash payments with any medical procedure/hospital I have ever come across here in the complicated nightmare of the USA health care industry. He implied same would be the case there with their Institute).

At this point, I am 99% likely to do this if it works out that I am "acceptable"...I see no other viable options for treating Hyperacusis, or perhaps I should say 'my' hyperacusis. The T is not my target here - well unless it gets worse! Then I will re-evaluate and presumably ask for a reversal of the procedure.

I have no "life"...so the risk reward ratio is almost irrelevant.

Best, Zimichael

 

Man , crossing fingers and toes for you mate !

 

@Zimichael
I am also glad that a ray of hope appeared in your life.

 

Zmichael,

Do you have the kind of H in which:

A. The volume of the whole world is cranked up.

B. The volume of just some frequencies are cranked up (coolers, motors, car brakes, etc.).

C. You experience pain.

D. Some combination of the above.


Which symptom(s) are you most looking to improve with the treatment?

Thanks.

 

This is a little bit "off topic" but is relevant to this case re treatment of hyperacusis - so I will bend my rule of not plastering threads with "distractions"...which drives me nuts.

Blujay...Overall volume level matters in general. The louder something is the more it "hurts" and the more I'm reaching for the plugs, or fingers in my ears, and getting the hell out of there! Nature sounds are a bit of an exception to that as a waterfall seems to be soothing - as long as not a monster huge fall with a volume like a 747 taking off! I do not carry a dB meter around so don't know objective details of that.

I would say I have H where anything over maybe 60 to 65 decibels of sound will start to get my "attention". Anyone who has a marginally loud voice I back off from and ask them to lower it - even if I have my Etymotics in. However, talking to one person, in a room, who has an average voice level is OK. (Presume that is a bout 60 dB). Talking in a quiet open-sky space outside is always easier. Sound 'softens' and dissipates more I guess.

As to frequencies and types of sounds...For sure "electronic sound" via phone or DVD player, etc. gets to me more than just volume level. I have come to the conclusion that 'digital' sound is more vicious than 'analog' sound at same volume/dB levels. It "bruises" (how it feels) my inner ears much more rapidly. In fact being on a speaker-phone call for too long just a month ago has increased my H damage and took out the few years of "calming" that had occurred since prior event in 2102 *[See my Profile/Information tab, which explains in a couple of clicks - just like all Profiles should...HINT! HINT!]
"Harder" and "sharper" sounds like clapping, or a sharp cough, or a bark of a dog, etc. if fairly close are out for me. I avoid completely or get zapped if not protected.

EXCESS TIME EXPOSURE to even what I think are "OK" sound levels has been the cause of my last two permanent damage/T volume increases or reduced threshold/tolerance H levels...The "stealth killer"!!!

For me, just forget... restaurants, stores with noisy people in or PA systems, street noise if over and above a few quiet cars, dinners with more than one or max two quiet people, etc., etc. Plugs go in before entering town or I avoid totally. It is almost ludicrous to me for instance, that people can go to movies or wonder about going to movies with T...I mean even with full 30 dB plugs in I would be zapped in about 5 minutes. And so on...

The "pain" part I have described elsewhere and wish I could find the description (too many posts) as it was better than I can come up with now...A sense of deep, irreparable, zap, nerve trauma, bruising, discomfort type sensation.
If exposed and I do get a 'zap' my ears can feel physically "bruised" for some time...minutes, hours, days. Though needless to say my psyche is a bloody quivering mess!!!

Hopefully this answers your questions as I need to eat breakfast - it's noon here in CA, and I need to look at flights.

Best, Zimichael

 

What I am getting at is this:

Is the procedure intended to dampen excess vibration, or is it to act as an earplug of sorts, to actually reduce the volume entering the inner ear?

 

This... the procedure is intended to dampen excess vibration.
I asked the exact same question on the phone, as I am not interested in a glorified earplug. If it were an earplug you would lose hearing across the board - which doesn't happen supposedly. And when I explained how I saw it as a kind of rubber damper on a resonating surface plate, S's reply was..."Exactly, yes."

Z.

 

Hey @Sailboardman ...Not being a scrounge here, but I have been hustling looking at tickets and flights and costs and the motel across the way and...It's a big hassle for me to travel (just getting to an airport from where I am let alone travel with T and H).
Anyway I soon began to realize that I have to stay 9 days in all as with a week between surgery and discharge, plus two days for tests before...that requires a place to stay that is:
~ QUIET.
~ Reasonably priced.
~ Has basic food preparation facilities - as I can't do restaurants of any type = too noisy (or are as am now!).
~ In a decent enough place that I don't go insane staring at the wall...as I do not watch TV. (Total BS, let alone the noise aspect of which currently can't even watch DVDs).

DO YOU KNOW OF ANYWHERE THAT FITS THE OUTLINE ABOVE???

ANY TT MEMBERS IN THE AREA THAT MAY BE ABLE TO HELP OUT???

ANY "ESCAPE PODS" TO GET OUT OF THE HUMAN ZOO...I live in the countryside for a reason.

I see Google Maps shows some green and parks around, but reality is often different to satellite photos imagination! For sure I will probably have to rent a car too. So all this is going to take some $$$ dolleros.
If I had these aspects sorted above I could actually leave next week and just miss the Christmas and New Year travel and prices lunacy...but that's pushing it maybe, seeing as I only found out about this yesterday!
Currently I am checking AirBnB and see a lot of stuff booked up already, and big price jumps in January...Oh yeah, the Snowbirds escaping the northern ice!

P.S. Maybe all this research/locations/survival school... can be plugged into by others who may follow if this thing is successful.

OK I'm wasted for today...Checking out till maybe this evening.

Best, Zimichael

 

Well maybe a future surgery for me, but my primary focus is on treatment if my tmjd first in hopes to alleviate my H and T.

 

Just wondering...
How did you determine that your H is from faulty dampening?

For anyone on this forum considering the procedure, the first question might be, "Is my hyperacusis caused by faulty dampening, or is it central auditory gain from some other cause? And how would I know? And might the procedure help anyway, in either case?

 

@Zimichael,

You are absolutely correct in assuming, this is the mega boom season for snowbirds, vacationers, holiday visitors, etc. All the resturants, retailers, hotel/motel people, salivate this time of year. Traffic is out of control and space in a decent place is limited. This is a high destination place this time of the year and it's chaos. 15 minutes from my digs to the beach in summer, is now 50 minutes. I'm only 10 miles away! This is the time of year, residents hibrinate and let the locust feast.

Late spring and summer, is the time you can save so much dough, on travel, car rentals, lodging and meals. You can write your own ticket and stay anywhere you like. Consider all this and PM me.

 

More suggestions Re: Your hotel:

Ask for a room away from the road, in an unoccupied wing (if available), away from the ice machine and other vending machines.

 

Blujay...Good luck with this!!! H is even less understood than T...so if you find the answer please let me know.

Thanks for the ice machine tip, etc., and yep I have traveled widely all over the world when had just T and learned a bunch of "sound travel wisdom". One is: Don't go to India if you have sensitivity to sound!!! Many more...

Z.

 

For those watching this thread here are answers below to a bunch of questions I asked, and probably you would ask - or at least need to know about, as some of them were not made that clear in the first few phone-calls.
In no particular order, and c/o one of the assisting surgeons/docs, and Silverstein's coordinating assistant:

- So far 13 people have had the procedure. As of yet no significant complications or failures.

- The parallels with any complications, or whatever, from the same procedure for Perilymph Fistulas is unknown.

- Yes, the procedure requires making a cut in the eardrum and folding it back, etc. Apparently this is no big deal and very basic for ear surgery protocol. Oh...OK I guess.

- Afterwards packing is put into the ear, or in some cases an ointment. This gives a muffled feeling/sensation whilst the stuff in there heals and until packing is removed. Not sure how long, but maybe a few days or one week.

- The presumption and hypothesis here is that Hyperacusis (or some element of Hyperacusis) is "conduction governed" and not (all?) "brain centered". In other words, "dampening the conduction surface" helps the screwed up volume sensitivity thing. Actually, this is kind of obvious otherwise the procedure would plain not work at all, and no-one would be saying it helped! Whether the "brain" will eventually rebel and say "F you!" to the procedure and ramp up sensitivity to sound again over time...or the opposite (decrease sensitivity even more) is unknown.

- No one knows the long term outcome of this procedure as there is no "long term" patient base yet.

- Prophylactic antibiotics are used to prevent possible infection from the surgery. No meds used are ototoxic. The antibiotic is "Keflex" = a cephalosporin antibiotic, and it is administered IV while undergoing surgery. I am not that keen on antibiotics as they mess with my already messed up gut flora, but maybe being IV it will be less of an issue. Not sure if have to take orally afterwards for a while...probably so.

- Yes it is OK to fly after the procedure once the packing is removed. (Would be a week later no matter what, as the post op check and evaluation before discharge = a week).

- Yes they have an HBO chamber available but have found no need for it after this surgery.

- Now this is a real stickler if coming from out of the area!!! Hospital requirements are that you must have someone pick you up after surgery and be with you for 24 hours. You are not allowed to drive your rental car OR be picked up by a cab!!! Ummmmmm???... I have not figured out how to deal with this if I am accepted and decide to do it. This requirement could make the whole thing go "boom!" right there. I guess they figure your spouse (mine have bolted some time ago) will be coming along or whatever... They don't sell them at Walmart so maybe I can "rent-a-spouse" for a day???!!!

- There are no plans for Dr. Silverstein to come out West, or any other of the "42 docs trained in this procedure" (what I heard in the video) to open up shop anywhere else in the USA at the present time. This is it. Only at the Silverstein Institute in Sarasota, Florida.

- Silverstein is a sprightly 80 years old, and apparently has made no rumblings about retiring yet...But, he is for sure closer to the last part of his life than being a Teenybopper! Mmmmmmmmmmmmmmmm.

- Surgeries are always and only on Wednesdays, so one has to be there two days in advance of that for the testing procedures and evaluation work ups. Then the discharge is a week after the op, if all is well... Hello Florida.

- The "one ear at a time" policy is to make sure that healing takes place, the result is positive, etc., etc. before buggering around with the remaining ear.

- There is a nerve that affects taste/smell running over the part of the ear that is worked on and it is 'moved out of the way'...Thus the potential for that reported "metallic taste" two of the video patients mentioned. Of course that also means a possible 'risk' there in that 'department'.

- This is an experimental trial/procedure, thus the overall risks are still really in the realm of the unknown.

OK, I think that about sums up what I have found out to add to what is in the video! And yes..."No, I will not be answering any questions that are covered in the video - watch it all the way through s'il vous plait."
I will know in due course whether: I am an acceptable candidate (I have filed in all the forms); if we can solve the "driver post op" puzzle; and/or if I chicken out and get cold feet!!!

Best, Zimichael

 

NO GO...

I was ‘refused” as potential patient for the Hyperacusis procedure. My “quality of life” (aka. near zero) Depression/Anxiety scores were way too high for what Silverstein (the surgeon/doc) considers optimal for current level of possible improvement potential. He said to wait a year by which time they will have more info. to judge likely improvement expected, etc. that may warrant me going all that way. He was nice about it, but I guess is keeping to the strict confines of the Study/Trial requirements – which he kinda has to do.

So much for being honest on my questionnaires I guess…as of course I’m depressed with bugger all quality of life who would not be?! I guess the trial needs people who are happier with their hyperacusis (and possible tinnitus) than me…I did note that there is no, or little mention of tinnitus in the reports of 13 participants in the trial so far. Maybe some/most/all of the people treated never had tinnitus??? Having both of them sure "ups" the "downer" scores, so a double whammy for me.
Looking back on my numbers maybe I was little too zealous about reporting how much impact T and H have on me, and it may give a somewhat over-amped picture of me as some 'doom and gloom' Darth Veda wannabe. However, as one of my docs said: "People who are truly depressed don't try as hard as you do to get well...they just mope!"
Yeah, well I sure try - and have been hit with two more levels of T and H since then!
I could sure use some 'damping down' of that pattern.

Bummer...But there it is I guess. Now someone else needs to step forward from TT please

Zimichael

 

You know, this is ridiculous. Who would go to do such a procedure being in a "happy hyperacusis" mode?
Totally unacceptable decision not to proceed with you because you have bad quality of life. This is what you try to fix anyway.

"Depression/Anxiety scores have to reach optimal level of possible improvement potential"?
This is just offending. What is this bull test anyway? Either they have a treatment or they don't!

 

Yes, I have the same questions:
- what can an an optimal level of depression/anxiety mean? How can anxiety or depression be "optimal"? What does that mean? Not too low but not too high either, just "right/optimal"?
- how can the anxiety or depression can be quantified? How can one give, however well intented he may be, an accurate rating/level/score of his anxiety or depression. What minimum level anxiety/depression means and what maximum anxiety/depression means? Or how depression or anxiety can be determined from some multiple choice questions?

Only by speaking directly at large with a patient, a doctor can have an idea about the anxiety or depression of that patient.

This is the first procedure that I heard of that is not performed if the patient is too unhappy, or too affected by the condition that the procedure is meant to correct. Absolutely insane! Revolting!

 

No, the requirement is for the study, not the procedure itself. If the procedure gets OK'd and gets widespread, it won't matter if the patient is depressed or not. However, I do agree with you that it is a bogus requirement. I think Autifony had this for their phase 2 testing too. @Gill Hayes did not get to enter that study because she was not bothered enough by her condition so I guess it goes both ways.

@Zimichael
Any chance Silverstein could do this procedure on you "off the record"? Or does he have to do it as a part of the study? If I recall correctly, the firtst patients who had it was originally not part of a study. The idea of doing a study came after doing the procedure with positive outcomes on them.

 

@lapidus... is mostly correct I think. I think Dr. Silverstein had to stick to the "scores boundaries" on the test evaluations, and if you fall outside those parameters then the Trial gets messed up. With a Trial you are under scrutiny to keep things more or less standardized - or it would be a zoo.

If you remember, when I applied for the Autifony trial here in the USA for age related hearing loss, I pre-asked (the very helpful guys at the Sacramento location), what may trip me up so as to not bother going all that way to get screened. Well, one evaluation required was the THI (Tinnitus Handicap Index = similar to the TFI) and just on one section (some of those "quality of life" aspects, etc. ~ Questions: 19. to 22 on the TFI), if I had answered anywhere near accurately I would have been way over the threshold for the AUT trial, which was 25...Hell I would have scored over 30 to 35 right there! Let alone all the other questions.
So, I did not bother to drive for 7 hours to get evaluated just to get booted out!

Back to this procedure at S.I. - It does seem like someone with severe hyperacusis would benefit exponentially more per % of gain (reduction in H.) than someone who was just somewhat bothered by it. I think all those people in the video could apparently do a lot more things in life than I could...unless they were just not saying every time they went to a dinner with more than one friend, or to town, etc. they put earplugs in! I also don't recall any of them saying they had tinnitus too (except the first lady that said Gabapentin resolved it some time back)...let alone SRT! (Sound-Reactive-T...which is hard to actually dissect form H, but still). The lady with the long dark hair did pull out an earplug in her left ear before speaking, but I'm not sure if she put it back in. If she did not, no way I could have handled that clapping and general level of sound in that room.

Etc., etc., etc.

And yes I did write an 'End-note' letter to them at S.I. and quoted one thing my docs have pointed out over the years of this T/H shit: "M. people who are truly depressed don't try as hard as you do to get well...they just mope!" Xexus...with the amount of stuff I used to do and get involved in compared to now, I doubt anyone would be a happy camper!!! Dance, performing, classes at college, eating out with friends, easy travel, and on. I miss all that stuff like crazy if I allow myself to even think about it. That's "depressing"!!!

Anyhow...I am way too "extreme" for the median bell curve one likes to have for Trials. Maybe in a year they will have more solid data and then H can be alleviated to a greater or lesser degree by this procedure...and maybe closer to home too! Going to Florida for 10 days was not exactly on my wish list.

Best, Zimichael

 

@lapidus

Oh, I see. It starts to make sense to me now. Thanks for explaining to me.

 

Well geeze @Zimichael, isn't that depressing! Sorry to hear, even though it did sound a wee complicated for you.

 

Why don't you just ask them to cut the nerve and be done with it? Yes it might not cure your tinnitus and might even make it worse but at least you wouldn't have H. And as I understand it it's the biggest issue?

If I were in your shoes I'd consider it.

 

The other option of course is to wait for a concrete treatment before destroying any chance of being healthy again, ever!

 

Yeah but then again he is not in his 20's. He's had tinnitus for about 60 years or something! The chances of having a healthy hearing again are pretty slim. It's a different thing if you're my age, 32.

 

On the other hand, having 60 years of T, the latest 9 if I am not mistaken being really bad, he must have considered and discarded that option that existed for all those years... let alone manage to have patience! But let the man speak for himself.

 

Yes but if he's had it bad for only last 9 with a worsening as late as this year. Maybe that option can be drawn back to the table.

I'm not saying he should. I just think that he's suffering so badly it might be better to be completely deaf.

There are other benefits. He never has to worry that it can get any worse. He can go and stand with his head next to the speakers on a Slipknot concert without risk of further damage or worsening.

 

Not he couldn't, because he would damage his other ear.
From what I know, H is in both ears, so cutting one nerve wouldn't rid him of H. As for the idea to cut both nerves and become completely deaf, this would increase the isolation to infernal levels, and this imposed by H isolation upsets him the most. No, not a good idea at all. Quite an upsetting suggestion, that's why I took the liberty to answer to it, so he doesn't have to, in these sad days.

 

In his last post Zimichael makes very clear that with severe H the worst things are the consequences of it: not being able to do the things one used to do before and missing them, which a complete deafness would not resolve, but only make things worse.

"Xexus...with the amount of stuff I used to do and get involved in compared to now, I doubtanyone would be a happy camper!!! Dance, performing, classes at college, eating out with friends, easy travel, and on. I miss all that stuff like crazy if I allow myself to even think about it. That's "depressing"!!!"

 

H is a nightmare, I have it as bad as anyone (my life is f//king over), but going deaf and being isolated to nothing but blasting T is a whole new level of hell im sure. I don't think that there are very many people (if any) that would survive living like that for very long. I can last about 2-4 hours with heavy plugs in until the pain of the noise really kicks into high gear and I start coming completely undone mentally, I can't even imagine absolutely nothing but blasting T, I would be dead and gone within days.

Not a good idea at all in my opinion mate. Plus, you don't need this surgery to be deaf, just walk around with foam plugs inserted properly and ear muffs on top, this is pretty close to being deaf and at least you have the option to take it off and hear the outside world if you choose to!