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cozo

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Reply with quote  #1 
Hi there I've had the operation on one ear in the uk for Hyperacusis it worked it's much better . Can't wait to get the other ear done . No need to go to doctor Silverstein in the USA and pay over £10000 per ear the surgeon in the uk is way more qualified ,

Dean.cozo@yahoo.com . There is hope for us all xx

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dean cosnett
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Lapidus

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Reply with quote  #2 

I'm guessing you went to Nuffield Health Tees Hospital?

https://neconnected.co.uk/uk-first-procedure-for-debilitating-hearing-condition-carried-out-in-teesside/

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cozo

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Reply with quote  #3 
Yes that’s me they are on about in the write up
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dean cosnett
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Lapidus

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Reply with quote  #4 
Just so I get this straight, you had the operation in april and that's the one you're talking about, not a new one? 
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cozo

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Reply with quote  #5 
Yes mate
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dean cosnett
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cozo

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Reply with quote  #6 
Having the other ear done after the new year
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dean cosnett
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Wellness1_manifested

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Reply with quote  #7 
Is the stapes packed with tissu, as well as tissue over round windiw and oval windiw?
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cozo

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Reply with quote  #8 
Hi yes it is I stated I wanted that done before the operation
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dean cosnett
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TallDude

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Reply with quote  #9 
Hi Dean, that is great news, i hope your second surgery is succesfull as well.

Can you tell me more about your H symptoms?
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Lapidus

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Reply with quote  #10 
Quote:
Originally Posted by cozo
Hi yes it is I stated I wanted that done before the operation

Ah, so you had both the reinforcement of the stapes procedure and the reinforcement of the round and oval windows?
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Wellness1_manifested

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Reply with quote  #11 
Was your stapes packed with tissue?
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TallDude

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Reply with quote  #12 
Why would someone post his email adres and full name on a forum?

Is Dean the same person as Mick commenting on the article from MC PC Repair that can be contacted as mickcozo@msn.com

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cozo

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Reply with quote  #13 
Mick is my brother . I’m try to bloody help mate.
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dean cosnett
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TallDude

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Reply with quote  #14 
Thanks, but me too, that's why i asked what your symptoms where, this procedure might not be helpfull for everyone. Because there are different subtypes of T and possible H. My T is volatile, sometimes pulsatile (heartbeat) and can be manipulated (so possibly related to a problem with the TTM). I have pain a day AFTER exposure to (even moderate) sounds or when i have to speak for long periods. My H and T go hand in hand. You could call it 'mechanical' Hyperacusis. Dr. Silverstein's procedure is a 'mechanical' fix.

It would also be interesting what the cause was of your H.

I would only have this done as a last resort and i have a high change of success.
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cozo

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Reply with quote  #15 
What's up with you do you think I woke up one day and thought HAY why don't I put aload of rubbish on this hyperacuss web site just for a good laugh?? Well the answer to that mate is NO . Hyperacuss is no bloody laugh I should know, I've put my email so people like you can talk to me so I can give people hope . Do you want some photos of the operation? I have lots from the surgery.im here to help and pass on the good news that there is something for this horrible horrible condition, ... Good day
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dean cosnett
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Aplomado

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Reply with quote  #16 

Thank you.

Can you tell us about what improvements you have seen?

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cozo

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Reply with quote  #17 
Hi to all . My hyperacuss is my own fault . I'm 48 now and since I was around 14 years old I've been listening to loud music with headphones at the gym/ on my bike /running/ and big speakers in my car always very Loud . Went to all the rave party's in the uk even party's in the jungles in India and always stud near the speakers. Ps I've also got tinnitus.

The operation has helped me a lot can't wait to get the other ear done , then I can really tell the final out come but if it's as good as the first I will be happy . But will never wear bloody headphones again and only listen to music on low with the midrange and tops turned down

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dean cosnett
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Aplomado

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Reply with quote  #18 

That is wonderful!

Did the surgery reduce your hearing at all?

I am unfamiliar with it.

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cozo

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Reply with quote  #19 
The first 3/4 months my hearing was lower but then got a lot better had tests done and now it’s all good
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dean cosnett
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debk_1

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Reply with quote  #20 
Hi Dean,
That's great news and thank you for sharing.  I would imagine it feels a little "off" right now to have one ear ok and the other not.(?)  Please do circle back with us all after the april surgery and recovery.  After 6 years with T and H (from whiplash-type incident), my whole life has been changed.  We are thinking of moving from our home because of all the noise and traffic.  Moving out to acreage would be costly for us, but I can no longer sit outside in my yard in the summer due to the noise.  Very isolating!
Best Wishes,
Deb
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rodmccain

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Reply with quote  #21 
That's great Cozo.

I don't doubt you had an excellent surgeon, but DR S is one of the very best as well.  Due to his age I don't believe he is doing the surgery any more.  There is another surgeon that worked with him, and is now practicing in Austin Texas. 

What specifically did you have the surgery for?  Pain with sound, or amplified hearing  perception, or both?  Depending on your symptoms I believe this does have something to do with how successful the outcome.  I have talked with several people.  It worked well for some others no. 

Regards,
Kathy McCain

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rodmccain

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Reply with quote  #22 
Hi DebK1

I am the very same.  The traffic noise is horrible. I can not sit outside, due to it being TOO LOUD.  Our only alternative is to move out to the country, with little mowing on small acreage. This would be Hill Country in Texas, due to more rocky terrain, a I can not tolerate mowers either! It is expensive though. 

Good luck and take care!

Kathy McCain
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cozo

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Reply with quote  #23 
Hi all. I didn't really have much pain as such only pain I get is when I'm in a room with people talking its like they are all shouting. And things like plastic water bottles cracking and snapping or when I'm in the shower the water hitting the bottom tray is loud . Dogs barking really Pissis me off ( hate dogs now ) and when people whistle gets on my tits . One of the worse is plates and cutlery clanging together..I use paper plates and plastic knives and forks at home now . I also get a fluttering deep down in my ears when I'm in a room with different people talking witch has calmed down a lot since having one ear done so should be nearly sorted when I get the other ear done fingers crossed
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dean cosnett
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Margy

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Reply with quote  #24 
Hi Deb!

Traffic noise is the worst, except for summertime mowers. Right now, after midnight, there are still some trucks I can hear driving round and round, making the most noise possible. I would move if there were a quiet place nearby. I also love to sit in my yard, and I’m very frustrated by all the traffic and lawn noise intrusions.
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Wellness1_manifested

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Reply with quote  #25 
Not/not a mechanical fix. Dr. Silverstein saved my life when I was at my lowest with Severe Hyperacusis bilaterally. This surgery works. I am living proof. Check out Hyperacusis Hope in facebook. Sandy McDonald
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Wellness1_manifested

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Reply with quote  #26 
Make that "Wellness2 Manifested" The surgery I received at the Silverstein Institute in Sarasota, Florida works. Thank you, Dr. Silverstein! This brilluant Physician saved my life. I was diagnosed with Severe Hyperacusis in both ears on 01 May, 2018.

The proof is in today's Audiology Report.  My recently operated on right ear (24 October /18)is still healing but thus far (6 weeks later)  I have a 40dB, 35 dB, 40 dB improvement! Before surgery: 35 dB, 40 dB, 35 dB, 25 dB. My 6-week post-surgery LDL 75dB, 70 dB, 75 dB, 60 dB  (As you know, the bigger the #'s, the more sound you can tolerate.)

My left ear was operated on 24 July, /18. Today (almost 6 months later) I am at 85 dB, 85 dB, 80 dB, 80 dB for LDL. My left ear 6 week post op LDL was 70dB, 75 dB, 60 dB, 60 dB.  So, you can see the improvement!

*****Please See Hyperacusis Hope in Facebook***
Wellness prayers to all.
"Everything Always Works Out For Me."
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EDogg

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Reply with quote  #27 
Those are impressive LDL improvements Sandy. I’m thrilled for your successful outcome with this procedure! Thank you for sharing with us.

Did you experience lasting ear pain with your hyperacusis? Not dullness or immediate pain, but pain lasting days after an insult? Do you know anyone who has successfully treated hyperacusis and lasting ear pain with this procedure?

I ask because to me, hyperacusis is a symptom of various underlying causes. Some may be mechanical or part of the sound conductance pathways, whereas in others, the pathology lies within the brain and manifests as hearing hypersensitivity, amongst other co-occurring symptoms such as lasting pain, light sensitivity, chemical sensitivity, etc. Thinking about this surgery, conceptually, it creates a tissue dampening in the transmittance of sound through the ear apparatus. So, I’d suppose for those whose hyperacusis is due to such things as a hypermobile ossicle, this might be very effective. When I wear earplugs, my overall sound sensitivity increases along with my tinnitus. I would surmise that, if I were to have such a procedure done, my tinnitus and overall gain would increase in compensation for the tissue dampening of sound. Since the pathology, in my case likely arises in the brain, it seems a mechanical manipulation such as this would not likely work for me, or others with similar forms of hyperacusis. I am not well read of Dr. Silverstein, but I wonder if he takes this important consideration into account.

Thanks again,
EDogg

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Wellness1_manifested

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Reply with quote  #28 
Thank you! I hope there is a solution for your particular symptoms. I have no contact with any one who has had this surgery. I am attaching a link from my Facebook Hyperacusis Hope. My pain was incessant..everything hurt: the hiss from the steam while I ironed, my husband's breathing and coughing, hard soled shoes clanking, my fridge's motor, traffic, cutlery..everything...sounds reverberating in my head.. non-stop amplified sound and pain like knives being thrust into my spine. My head felt pressurized. There was no flare up after an exposure to an incident..it was 24/7. The only solace was silence in a closet under the stairs.

I feel for you as I've been there. I encourage you to watch the following link and contact Dr. Silverstein to inquire about your particular situation. Wellness prayers!

Life changing surgery for Severe Hyperacusis is available at the Silverstein Institute in Sarasota, Florida. I am forever grateful to Dr. Silverstein.

https://www.facebook.com/earresearchfoundation/

https://www.earsinus.com/inventions-procedures
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Wellness1_manifested

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Reply with quote  #29 
EDogg, I just re-read your post to see if I missed anything. Interesting that you mentioned "light sensitivity"....prior to getting custom made earmolds in 2013 to cope with sound (I wasn't even aware of the word "Hyperacusis" until my Severe H diagnosis 01 May /18) I could not sleep since 2013 unless I was in pitch black. I started using electrician tape to cover up the tv red light and put cloths on the digital alarm clock, etc., blankets under the door to stop the filtering light.
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TallDude

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Reply with quote  #30 
@Edogg, just my thought, this procedure will probably not help me either. You described earlier that your pain comes some time after exposure. As long as i don't expose myself to loud sounds for short periods or moderate sounds for longer periods i feel pretty good. Sounds are uncomfortable for me, but do not cause pain on impact. The pain comes typically a day or even more AFTER exposure and usually i even have a good day before the pain. The pain can last for days or even 2 weeks. My T and H are worse when i have pain so they go hand in hand.

I took 2 weeks GABA (supplement) and this gave me VERY good improvement for both T and H. There where even moments i had to concentrate to confirm if my T was still there. But unfortunally i had some bad side effects. Dr. Norena thinks my problem is caused by the tympanic muscles. This can cause T and H. The more i think of it the more i think he is right. It also explains my variable T and the fact i can manipulate my T with my jaw and neck muscles. The fact that a muscle relaxer helped me a lot. I always noticed this T is very different from the one i already had for years.
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EDogg

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Reply with quote  #31 
Sandy,

Thanks for the well wishes. I appreciate that very much. This condition has affected my life in a very significant way, as it did for you from what I gather from your posts. In this light, it is very important to share personal testimony and success stories, given how little is understood about this condition and how very few clinicians exist who can appropriately diagnose, and even more importantly, can find ways to effectively treat. For the many of us who fall outside the uncomplicated hyperacusis (that often seems to resolve on its own or with sound therapy), there is very little else besides sound therapy that is offered. I know from my experience, I’ve had to direct my own care in many ways just to stay afloat. I’m very thankful for the few extremely knowledgeable folks I’ve met who have helped me along the way. So, thank you for sharing your success, with quantitative proof of your improvement through LDL assessment, but more pertinently, through your ability to re-engage in life.

Best,
EDogg
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EDogg

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Reply with quote  #32 
Hi TallDude,

We certainly share some similarities in our condition! I am not able to alter the tinnitus pitch by neck movement, as you describe, but the delayed and lasting pain I am all too familiar with. I am currently on day 8 of a nasty painful setback brought on by simply trying to strum on my acoustic guitar (with fingers, not a pick). It has taken me to a very dark place, as music was a huge part of my life prior to this.

Your improvement on GABA is an important data point and it does seem that TTM may be a culprit here. Wonderful that you have been in contact and received helped from Dr Norena. From what I hear from other audiologists in the field, he is an expert on acoustic shock related hyperacusis. Do you also experience the TTM fluttering with sounds? Mine definitely does that, especially when my thresholds drop like now. I’m not certain TTM is the cause of all the pain, but I suppose it’s possible or is related in some way in my case.

Best of luck and hope for recovery for you my friend!

EDogg
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TallDude

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Reply with quote  #33 
Hi Edogg,

Music has always been a part of my life too, i know what you mean. Haven't touched an instrument for probably 5 months now. Unfortunally everything i did in my life made noise. I also have a basement full of equipment for woodworking f.e.

As far as fluttering, i hear cracks, also sounds like crickets and some days ago it seemed like i had a woodpecker in my ear. But also high frequenty twitching sounds. If i have a setback my T is much more unstable and worse. I also notice that by the evening my T and the variable sounds are more noticable.
I always noticed that the T i have recently developed is definitly not different with the T i already had for years.

I have an appointment with and ENT (Dr. Michael Boedts) in february who is specialized in acoustic shock disorders and TTS. Maybe he can make a diagnose.

If you experience fluttering, did you ever had your tympanic muscles visually checked?

Best of luck for you too mate!
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EDogg

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Reply with quote  #34 
Hi TallDude,

I hope we can both get back into our hobbies. To answer your question, no I have never had my tensor tympani visualized, though I can’t imagine what else would be causing the fluttering in my ears with sound. It’s one of those tiny muscles over reacting. I hope your appointment with Dr. Boedts is helpful. I recall from Dr. Norena’s paper the mention of a case report (in process) by Dr. Myriam Wescott, who apparently successfully treated TTM myoclonus with a stellate ganglion nerve block. That might be worth further investigation or discussion with the ENT. It would be a rather minimally invasive injection into the anterior neck soft tissue. Likely very tolerable with local anesthesia. Something to think about.

Best,
EDogg
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cozo

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Reply with quote  #35 
Quote:
Originally Posted by cozo
Hi there I've had the operation on one ear in the uk for Hyperacusis it worked it's much better . Can't wait to get the other ear done . No need to go to doctor Silverstein in the USA and pay over £10000 per ear the surgeon in the uk is way more qualified ,

Dean.cozo@yahoo.com . There is hope for us all xx


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dean cosnett
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cozo

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Reply with quote  #36 
Some photos of my operation
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rodmccain

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Reply with quote  #37 
It has been  my understanding, that the surgery is PRIMARILY for people with hearing amplification issues or LOUDNESS, as in the world is on high volume, picking up on frequencies ect. 

This is what I have, and was diagnosed with severe H and T.  I have reactive and kindling T as well.  I am home bound due to this devastating condition. Lately my hearing has gotten worse, along with the T.  The reactive T is really bothering me today very much.  Tried going to a small store here in town, and had to wear muffs,  as everything was VERY LOUD. 

Evidently, some people react with pain, others with amplified hearing  and T?  Due to my severe tinnitus I am thinking the surgery would not work for me, but make my T much worse.   I have been in contact with others that had the LOUDNESS issue only and said it gave them their life back. 

Too many grey areas here.  So much they still need to learn. I am so happy that the surgery was a success for you though!  I relate to your suffering, even though we have different symptoms.

God bless,
Kathy
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cozo

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Reply with quote  #38 
Hi I had the opp because the world has its volume turned up loud and it didn’t make any different to my tinnitus . You may think it does due to the pluging of the the window s but it doesn’t. X
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dean cosnett
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Aplomado

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Reply with quote  #39 
Quote:
Originally Posted by rodmccain
It has been  my understanding, that the surgery is PRIMARILY for people with hearing amplification issues or LOUDNESS, as in the world is on high volume, picking up on frequencies ect. 

This is what I have, and was diagnosed with severe H and T.  I have reactive and kindling T as well.  I am home bound due to this devastating condition. Lately my hearing has gotten worse, along with the T.  The reactive T is really bothering me today very much.  Tried going to a small store here in town, and had to wear muffs,  as everything was VERY LOUD. 

Evidently, some people react with pain, others with amplified hearing  and T?  Due to my severe tinnitus I am thinking the surgery would not work for me, but make my T much worse.   I have been in contact with others that had the LOUDNESS issue only and said it gave them their life back. 

Too many grey areas here.  So much they still need to learn. I am so happy that the surgery was a success for you though!  I relate to your suffering, even though we have different symptoms.

God bless,
Kathy


Kathy, are you thinking of trying the surgery?
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rodmccain

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Reply with quote  #40 
Hi Aplomado,

Yes...but I am on the fence.  Terrified it will make my multiple signal T worse, and/or not help the H.  Even if it did help the H, it would be a nightmare if the T worsened. 

I wish there was something that would address both.  I am truly despondent. 

Thanks for asking. Hope you are doing well. 

Kathy 
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florian_89

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Reply with quote  #41 
Hello Kathy

I am in the same situation.

Cozo says it will not amplify the T.

If somebody else could proof that statement.

(I trust Cozo, but somebody elso would be good)

Greets Flo
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Aplomado

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Reply with quote  #42 
It is my understanding the surgery is reversible, correct?
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EDogg

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Reply with quote  #43 
Kathy and Florian,

Perhaps you might consider contacting the institute and see if they have any hard data about post op changes in tinnitus following the procedure, which has been done on 25+ patients now. They have published on this and it appears they are tracking the results from watching one of their videos. Just a thought.

EDogg
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rodmccain

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Reply with quote  #44 
Hi florian 89

Very sorry to hear this.  I believe I am going to wait a bit longer until they have more data, and perfect the surgery. I believe they are still learning.  I trust what cozco is saying as well, but as you know everyone is not exactly the same.  There are so many variables.  Perhaps he is just braver than I...[smile] 

Keep us posted if you decide to go ahead with the surgery.  I will certain do the same.

Good luck to you!

Kathy 
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florian_89

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Reply with quote  #45 
Quote:
Originally Posted by rodmccain
Hi florian 89

Very sorry to hear this.  I believe I am going to wait a bit longer until they have more data, and perfect the surgery. I believe they are still learning.  I trust what cozco is saying as well, but as you know everyone is not exactly the same.  There are so many variables.  Perhaps he is just braver than I...[smile] 

Keep us posted if you decide to go ahead with the surgery.  I will certain do the same.

Good luck to you!

Kathy 


Hello Together,

Yes I also try to gather Informations. Really the Most important for me is that its not increase T.

In the other hand I see this as a opportunity to have a normal life again and I am at a point where I know that sound therapy will not bring me further.

I can't hear certain sounds especially fast rising and high pitched sounds. As this surgery should dampend the high frequencies and still led some amount of sound through I just can hope that this is enough to feed the brain. I hope it's not like an ear plug.
I am currently trying to get in contact with the Doctor Cozo mentioned in UK.

Have a good night everyone.
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cozo

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Reply with quote  #46 
HI ALL. I've got tinnitus in both ears and hyperacuss in both ears and since I've had the operation on one ear so far my tinnitus is the same in both ears , and my hearing is the same in both . Hope this helps
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dean cosnett
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Aplomado

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Reply with quote  #47 
Kathy, if sound therapy has not been helpful for you, you probably should look into and strongly consider the surgery.  I do not think surgery is right for me.
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cozo

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Reply with quote  #48 
Yes the surgery is reversible
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dean cosnett
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cozo

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Reply with quote  #49 

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Ghirin11

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Reply with quote  #50 
Hello,
I have had H for the past 2+ years.  I do not have T.  The symptoms that bother me most are the autophony and sound sensitivity.  I have seen countless doctors with no success in getting help.   I tried sound therapy for almost a year.  I didn't have any improvement so stopped using the sound generator.   I am getting desperate and would try anything at this point.  I go see my doctor this Monday at MEEI.  I have only seen him one other time.   I mentioned the Silverstein surgery to him and he said that they perform that surgery at MEEI.  I am so tired of all the waiting and Zero improvement in symptoms.  My last visit at MEEI entailed removing the tubes from my ears, then a four month wait for them to heal.  That's the waiting I am talking about!!  I am at the end of my rope as everyone is in this forum.   

Mona      

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Mona Ghirin
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