If a Surgery Had a 50/50 Chance of Getting Rid of or Reducing Your Tinnitus, Would You Get It?

[GoatSheep]

I've talked about it in other threads... I have bilateral osteomas of the internal auditory canal. My canals are also narrow, especially on the right side. The narrowing increases the likelihood the osteomas are causing some kind of compression that could cause auditory symptoms. My Dr./possible surgeon says he sees my right side as the likely culprit do to it being more narrow, the osteoma on that side being larger and my tinnitus being more active in that ear.

I have hyperacusis in my left ear and intermittent tinnitus in that ear also. So it's not asymptomatic

He was reluctant to do surgery till I told him how severe my tinnitus is and that I can't sleep without clonazepam, it's reactive to masking, and it's causing me issues with working and raising my children.

The surgery is neuro surgery of course. Retro sigmoid craniotomy. Risks include development of vestibular issues which I presently don't have, hearing loss/deafness and of course other risks associated with general neuro surgery.

If I wait for bimodal stimulation I could lose the chance for surgery. Since I can't afford 4 trips to Ireland plus the cost of Lenire currently and it's undetermined when Lenire is coming to the US my willing surgeon could leave and another surgeon may be unwilling.

On the other hand, there is no guarantee this is causing my tinnitus and it could essentially be major surgery for nothing.

This is an extremely rare medical condition though and it wasn't discovered incidentally since my symptoms are auditory.

So if you were me would you get the surgery?

 

[all to gain]

I've talked about it in other threads... I have bilateral osteomas of the internal auditory canal. My canals are also narrow, especially on the right side. The narrowing increases the likelihood the osteomas are causing some kind of compression that could cause auditory symptoms. My Dr./possible surgeon says he sees my right side as the likely culprit do to it being more narrow, the osteoma on that side being larger and my tinnitus being more active in that ear.

I have hyperacusis in my left ear and intermittent tinnitus in that ear also. So it's not asymptomatic

He was reluctant to do surgery till I told him how severe my tinnitus is and that I can't sleep without clonazepam, it's reactive to masking, and it's causing me issues with working and raising my children.

The surgery is neuro surgery of course. Retro sigmoid craniotomy. Risks include development of vestibular issues which I presently don't have, hearing loss/deafness and of course other risks associated with general neuro surgery.

If I wait for bimodal stimulation I could lose the chance for surgery. Since I can't afford 4 trips to Ireland plus the cost of Lenire currently and it's undetermined when Lenire is coming to the US my willing surgeon could leave and another surgeon may be unwilling.

On the other hand, there is no guarantee this is causing my tinnitus and it could essentially be major surgery for nothing.

This is an extremely rare medical condition though and it wasn't discovered incidentally since my symptoms are auditory.

So if you were me would you get the surgery?

That really is a tough one to answer. If you gave me the choice of losing a leg below the knee vs tinnitus, i think I would take the leg below the knee. Really!! It would be a tough choice though.

To go deaf though is serious stuff and you might also be left with the tinnitus. Not a nice combination. It's something you are going to have decide on yourself. Nobody can do that for you.

 

[GregCA]

So if you were me would you get the surgery?

I can answer the question because I was in the same position a couple of years ago. My stapedotomy also had about a 50/50 chance of getting rid of T.

I did the surgery. It brought a good chunk of hearing back, but it didn't help with T, unfortunately. I thankfully didn't get any bad side effects from it.

For those risky surgeries I really suggest doing your homework on the surgeon.

 

[GoatSheep]

I can answer the question because I was in the same position a couple of years ago. My stapedotomy also had about a 50/50 chance of getting rid of T.

I did the surgery. It brought a good chunk of hearing back, but it didn't help with T, unfortunately. I thankfully didn't get any bad side effects from it.

For those risky surgeries I really suggest doing your homework on the surgeon.

https://wexnermedical.osu.edu/find-a-doctor/oliver-adunka-md-53431

This would be my surgeon.

I have had a standard audiogram that came back normal for my age, a high frequency up to 20kHz that came back better than normal for my age, and an ABR performed as a hidden hearing loss test that came back normal. So it doesn't seem to be noise trauma, but who knows.

I just hate that I have one on each side because if the right one doesn't fix it then I'll wonder if the left one would and two craniotomies for the possibility of no resolution sounds even worse.

 

[Daniel Lion]

GregCA had good advice.

Sorry you find yourself in this rare and difficult situation. Write Dr. Silverstein in Srasota Florida, he may have some info worth contributing.

If this is your problem I doubt Lenire will be the fix. Tough call. All surgeries are scary as hell, but if the surgeon is skilled and has done the operation before, many times, that is comforting and can help sway your decision.

GregCA is my encyclopedia here, ask him questions, Greg Sacramento and Lane are also wicked smart about medial stuff. I am sorry I can't be of more help. Like you, I am not cashed up and live precariously trying to hold my family together.

I am praying for you man, that's all I can do, unless I win the lottery.

Be strong, sincerely Daniel

 

[GoatSheep]

Also @GregCA I'm sorry to hear your procedure didn't help your tinnitus.

 

[GregCA]

https://wexnermedical.osu.edu/find-a-doctor/oliver-adunka-md-53431

This would be my surgeon.

He seems to have good credentials. Ask him about his statistics, i.e. for his patients, what success rates and side effects rates. Compare them to "averages" you can find online.

Do you feel comfortable with him? Bedside manners matter a lot too.

 

[GoatSheep]

He seems to have good credentials. Ask him about his statistics, i.e. for his patients, what success rates and side effects rates. Compare them to "averages" you can find online.

Do you feel comfortable with him? Bedside manners matter a lot too.

He seems to have good bedside manner. Like to say, his initial approach was all you have is tinnitus so surgery isn't a good idea. Then when I told him how bad it was and how it affected my life he said he understood and that if I wanted he would do the surgery. I've sent some follow up messages via mychart app and he answered promptly. The other day I sent a message and asked for him to call me to talk further and he did.

He said about a 5% risk of developing vertigo and the same for hearing loss. What other statistics would you recommend I inquire about. Like morbidity?

 

[GregCA]

He seems to have good bedside manner. Like to say, his initial approach was all you have is tinnitus so surgery isn't a good idea. Then when I told him how bad it was and how it affected my life he said he understood and that if I wanted he would do the surgery. I've sent some follow up messages via mychart app and he answered promptly. The other day I sent a message and asked for him to call me to talk further and he did.

My surgeon also told me that the stapedotomy was just to recover hearing, not to cure T, and that the odds of getting rid of T was just 50/50, so he didn't recommend it if it was just for the T.

It sounds like your surgeon is responsive.

He said about a 5% risk of developing vertigo and the same for hearing loss. What other statistics would you recommend I inquire about. Like morbidity?

Well yes, all stats, like vertigo and total hearing loss. For stapedotomies, the general total hearing loss is around 1%. Having some extra losses is higher of course (even if you don't go totally deaf). There was also a risk of facial paralysis, loss of taste, smell, etc... Usually you get a list of all reported issues with associated percentages. If you're going under general anesthesia, you also get the risks associated with that.

 

[vttbx]

https://wexnermedical.osu.edu/find-a-doctor/oliver-adunka-md-53431

This would be my surgeon.

I have had a standard audiogram that came back normal for my age, a high frequency up to 20kHz that came back better than normal for my age, and an ABR performed as a hidden hearing loss test that came back normal. So it doesn't seem to be noise trauma, but who knows.

I just hate that I have one on each side because if the right one doesn't fix it then I'll wonder if the left one would and two craniotomies for the possibility of no resolution sounds even worse.

If I had hearing that good, the last thing I would do would be surgery. Plus your T is relatively recent.

 

[GoatSheep]

If I had hearing that good, the last thing I would do would be surgery. Plus your T is relatively recent.

Yeah, I'm really on the fence about things. It's just hard to believe the osteomas are simply a coincidence I suppose.

The main thing is inability to sleep. From the day of onset I literally couldn't sleep more than 15 min intervals when passing out from exhaustion or more than 2 hours with medication and I'm talking trying Ativan, Trazodone, seroquel, Ambien and Ambien CR. Clonazepam is the only thing that makes me sleep and I think it's because it quiets the tinnitus considerably in addition to the sedative effect and it being long acting. But I don't want to stay on benzos. I feel trapped between a rock and a hard place. I have three children. 2 of them have special needs. Being sleep deprived is especially dangerous in the case of my youngest son. He has a brain malformation that causes balance issues and has a propensity for falling and getting injured. So I have to be vigilant of his actions quite often. Especially in public.

 

[GoatSheep]

@GregCA after your stapedotomy when you woke up could you immediately hear your tinnitus or did the anesthesia affect it? Ive read in some other threads that for several hours after a surgery people were tinnitus free. If I go through with the surgery which is looking more and more likely how long should I give it before I consider it may have been a success in eliminating my tinnitus?

 

[GregCA]

@GregCA after your stapedotomy when you woke up could you immediately hear your tinnitus or did the anesthesia affect it? Ive read in some other threads that for several hours after a surgery people were tinnitus free.

To be honest I was groggy and don't remember very well. It didn't take long for me to realize my tinnitus had not gone away though.

If I go through with the surgery which is looking more and more likely how long should I give it before I consider it may have been a success in eliminating my tinnitus?

I think it depends on your surgery. Your tinnitus may go away right away or it could also go away progressively as your body heals, or it may not go away at all (like my case). I don't know that there is a timeline to stick to. I'd imagine that if you don't see any noticeable improvements 3 months post tinnitus, more months aren't going to make it that different.

 

[GoatSheep]

To be honest I was groggy and don't remember very well. It didn't take long for me to realize my tinnitus had not gone away though.



I think it depends on your surgery. Your tinnitus may go away right away or it could also go away progressively as your body heals, or it may not go away at all (like my case). I don't know that there is a timeline to stick to. I'd imagine that if you don't see any noticeable improvements 3 months post tinnitus, more months aren't going to make it that different.

Sorry I didn't phrase that last part properly. I meant for the anesthesia to wear off to know if there was an immediate effect. I know it may be a gradual process if it's not immediate.

To be honest I was groggy and don't remember very well. It didn't take long for me to realize my tinnitus had not gone away though.



I think it depends on your surgery. Your tinnitus may go away right away or it could also go away progressively as your body heals, or it may not go away at all (like my case). I don't know that there is a timeline to stick to. I'd imagine that if you don't see any noticeable improvements 3 months post tinnitus, more months aren't going to make it that different.

Sorry my last statement wasn't clear. I meant for the anesthesia to wear off to be able to tell if there was an immediate cessation.