Unilateral hearing loss

[maoffive]

Hi,

 

My son was diagnosed with profound sensorinueral hearing loss about 6 months ago. He is 11.

 

He was seen but the CI team's audi & speech; had all the assessments done and as far as they were concerned he was a candidate for a CI; the sooner the better.

 

Then we saw the ENT (seemed backwards to me) and he kept telling me how the CI was only one option; another really good option was the Bonebridge. I told him I wasn't all that interested in the BB as he already wears a CROS aid and it is useless, even the audi testing showed it is not helping him but the ENT kept reiterating how good the BB is. He sent my son for a CT and MRI.

 

At the next appointment with the ENT he told us that my son could not have the CI done. It would be too risky as the bone between the cochlear and the carotid artery is abnormally thin and there is a risk of perforation. So he booked him in for the BB.

 

A while later we saw the original audi who used to work at the same place as the CI team and she told me not to tell anyone that she told me but get a second opinion. 

 

I talked to the team and they assured me that the decision was a team one and other ENT's would agree so I left it. However, as the BB surgery gets closer my son is now asking for a second opinion as he desperately wants to hear with his bad ear. Trouble is I do not want to upset the apple cart and risk making the surgeon upset with me. Plus I do not actually know if anyone else in my state does CIs.

 

Does anyone have any advice or opinions to share? I would greatly appreciate hearing from you.

 

Thankyou

[Ivana Marinac]

Hello,

Welcome to the Hearpeers

Disclaimer at first: as we do not have nor the CT scan of your son nor his datas nor we can mix into the decision of your ENT - I will you write options and explain it.

1. You do have right to consalt another ENT if you do not feel that you clicked with your present one. The bond between surgeon and patient has to be made, otherwise - misunderstanding can happen.

2. You do understand that rehabilitation of one ear is highly demanding? It is not plug&play device although if we are talking about real revive of that ear - CI is really only option.

3. Here we come up to the BB as an option. BB is nothing like an hearing aid so using it as CROS device does not necessarily mean bad results: soun is better distributed to other ear and this is much faster solution although without the advantage of reviving the affected cochlea. Presently, unilateral rehabilitation with a CI - is very succesful just - you and your son have to be aware of efforts which you will have to invest in the rehabilitation.

4. I am unilateral user of BB but my hearing loss is conductive - I just want to describe you the difference between a hearing aid and BB and their effectiveness.

5. I am also an ENT - I am writing this strictly to explain you all the advantages and drawbacks of choosing the implant. I understand both sides but - surgeons priority is not hearing rehabilitation than surgical implantation; rehabilitation comes after that. A CI team has different approach - they look from another perspective - the rehabilitation one. That's why I agree with your audi, if you feel you need another opinion - please do. Only that will bring you peace in your mind which is the most important.

At the end - please ask as much as you feel you need: we are pretty active gang here and are pretty active and open to everything.

[maoffive]

Thank you for your reply, I appreciate the information you have given me. I probably didn't explain myself well so to clarify I am not seeking advice on the surgeon's decision or which implant to choose, I was just wondering if it is appropriate to ask for a second opinion or if I was being silly and worrying about nothing, not trusting the surgeon etc

 

The rehabilitation with CI is not an issue, the team explained it all very well when we were looking at the CI and we knew what to expect. 

 

Can I just check that my understanding is correct that because his hearing loss is sensorineural the BB will not give him any hearing in his bad ear? With the BB he will always only hear through his good ear?

 

I just want to do the right thing by my son.

 

Thanks again

[Kara of Canada]

Welcome to Hearpeers! I wish you only the best of luck and always trust your instincts. A mother knows her child best.

[Cara Mia]

Hi maoffive,

 

I am sure that it is absolutely appropriate to ask for a second opinion (especially, considering the seriousness of your decision to make). I think it is a quite common practice in medicine so docs (professionals) can take it with no offence - nothing personal, just to be safe than sorry.

 

I am conserned with two things I got from your story. First, I didn't understand why your CI team could not explain your clearly how BB is going to help your son considering  his hearing loss type. Second,  if your current surgeon feels not comfortable to go with CI because of the  found abnormality of bone thickness, perhaps it worth to find another surgeon who has confidence in how to approach that issue with success if you decide that CI is what your son  needs.

 

Best of luck to you and your son.

[Ivana Marinac]

Thank you for your reply, I appreciate the information you have given me. I probably didn't explain myself well so to clarify I am not seeking advice on the surgeon's decision or which implant to choose, I was just wondering if it is appropriate to ask for a second opinion or if I was being silly and worrying about nothing, not trusting the surgeon etc

The rehabilitation with CI is not an issue, the team explained it all very well when we were looking at the CI and we knew what to expect. 

Can I just check that my understanding is correct that because his hearing loss is sensorineural the BB will not give him any hearing in his bad ear? With the BB he will always only hear through his good ear?

I just want to do the right thing by my son.

Thanks again

 

- Don't worry, it is always appropriate to ask another opinion. Surgeon should be opened even to offer his or her patient's second consultation: this is not an issue regarding our knowledge than patient's peace of mind.

So, please - I understand you from both perspectives very clearly  Patient or, in your case - you as a mother of child should be comfortable to ask as many questions as you need: you are giving your child into other's arm, complete peace of mind is something what improve the result of the operation but also the rehabilitation.

 

One thing we didn't touch - is your son's hearing loss stable or progressive? In the second case, the Bonebridge will help only some time - but if it is progressive there is a chance that even another ear starts deteriorating; in this case, a cochlear implant is inevitable. So - yes, you're right; if you choose for the BB the affected ear will never be stimulated at all. It works on the way that it picks up sound from different side and send it into second ear. 

 

Pardon me if I sounded little bit rude, I needed to touch all issues so my post seemed little bit too technical and artificial.

If you have any questions, please - do ask. There is nothing like peace in your mind, and going to the op, I can not imagine how it is to give your child without it. 

[Ivana Marinac]

Hi maoffive,

 

I am sure that it is absolutely appropriate to ask for a second opinion (especially, considering the seriousness of your decision to make). I think it is a quite common practice in medicine so docs (professionals) can take it with no offence - nothing personal, just to be safe than sorry.

 

I am conserned with two things I got from your story. First, I didn't understand why your CI team could not explain your clearly how BB is going to help your son considering  his hearing loss type. Second,  if your current surgeon feels not comfortable to go with CI because of the  found abnormality of bone thickness, perhaps it worth to find another surgeon who has confidence in how to approach that issue with success if you decide that CI is what your son  needs.

 

Best of luck to you and your son.

 

Cara,

 

both solutions are valuable, just use different approaches. If I have understood maoffive well, their CI team choose a CI for the purpose of the hearing rehabilitation. There are teams who believe more in other implantable devices - I will not clarify my position in order not to make any influence just clarify what are the differences. Her audi actually advised to see another surgeon so they can have peace in their mind regarding the decision.

You have pointed good - it is, of course hypothetical, but there may be a surgeon who would feel it is possible to implant a CI with success. Another consultation does not hurt - I agree.

[Adam]

Not sure where you live but most surgeons should have no problem with you getting a second opinion. If the surgeon does have a problem with it than ( at least for me) that would be a red flag and I would get one. If it were my son, I would tip the apple cart over if I had to to get him the best care he needed. Most doctors welcome a second opinion.

[maoffive]

Thankyou for your replies. May I ask (if anyone knows) how is the Bonebridge better than a CROS aid? The ENT just told us that the Bonebridge will have a better quality of sound for my son but that isn't really very descriptive.

[Adam]

Maoffive

That is hard to answer as each person might have different opinions of how they like it.

I wore the bi cross AIDS for a few years. I wasn't really crazy about it. When. I originally got my cros aids, my Audi told me that she only had a few patients with the cros. Either you love it or you hate it. Obviously it is not working for your son

I now am bilateral with a CI. My doctor never suggested a bonebridge as my other ear went south as well.

Since you have an unusual situation, that would be even more reason to get a second opinion. Many surgeons out there can be particularly good in dealing with unusual circumstances like your sons. There could be a doctor out there that has developed a technique in dealing with the thinner bone as you described.

This is a very tough decision as this is your child and we know that you want the best for him.

I have a congenital condition which requires brain surgery from time to time. There have been a few times where my wife and I did not feel comfortable with the doctors recommendation. We asked for and got a second opinion. As it turned out for me, the second opinion was the way to go. The original doctor came to see me after the surgery and there were no hard feelings whatsoever. You have the right seek out the best care for your child. It can't hurt to ask. You want to be 100%.confident in the decision that you made.

[Ivana Marinac]

Maoffive

That is hard to answer as each person might have different opinions of how they like it.

I wore the bi cross AIDS for a few years. I wasn't really crazy about it. When. I originally got my cros aids, my Audi told me that she only had a few patients with the cros. Either you love it or you hate it. Obviously it is not working for your son

I now am bilateral with a CI. My doctor never suggested a bonebridge as my other ear went south as well.

Since you have an unusual situation, that would be even more reason to get a second opinion. Many surgeons out there can be particularly good in dealing with unusual circumstances like your sons. There could be a doctor out there that has developed a technique in dealing with the thinner bone as you described.

This is a very tough decision as this is your child and we know that you want the best for him.

I have a congenital condition which requires brain surgery from time to time. There have been a few times where my wife and I did not feel comfortable with the doctors recommendation. We asked for and got a second opinion. As it turned out for me, the second opinion was the way to go. The original doctor came to see me after the surgery and there were no hard feelings whatsoever. You have the right seek out the best care for your child. It can't hurt to ask. You want to be 100%.confident in the decision that you made.

 

 

Adam - if I have understood well this mum, her son has unilateral sensorineural hearing loss - not bilateral. In that case Bonebridge has sense but as I have explained - his affected cochlea is not directly rehabilitated. There are many questions behind the finding of unilateral hearing loss for the professional: from possible tumour to the unknown cause with probability that another ear deteriorates at certain point.

[Ivana Marinac]

Thankyou for your replies. May I ask (if anyone knows) how is the Bonebridge better than a CROS aid? The ENT just told us that the Bonebridge will have a better quality of sound for my son but that isn't really very descriptive.

 

Bonebridge is definitely better than hearing aid - some people are satisfied but as I have explained earlier, it doesn't rehabilitate the affected cochlea just transmit the signal to the other, healthy ear. This means there is no ability for hololocation, also - the ability to hear in noise is better but I do not know for the research which would compare a bone-conduction implant with a CI in order to compare the interaural differences which help us to better discern what was told in noise. Partly, this is hard because - there are no 2 identical person and their response are subjective categories. 

[Adam]

Yes I believe he is unilateral. I was under the impression, the only issue was thinner bone. Don't remember her mentioning any other problems

[Adam]

From what I have read, the bonebridge is a big step up from hearing aids.

[Ivana Marinac]

Yes I believe he is unilateral. I was under the impression, the only issue was thinner bone. Don't remember her mentioning any other problems

 

I believe also because doctor proposed Bonebridge but I made a difference between their and yours case taking into the equation CROS system, Bonebridge and a CI.

If you have one functioning ear, Bonebridge has its place although a CI actually rehabilitates the affected cochlea. 

Yes, she didn't mention any other problem.

[Ivana Marinac]

From what I have read, the bonebridge is a big step up from hearing aids.

Definitely. Only thing is where to draw the line and go for a surgical implantation in contrast to a simple getting a hearing aid.

I would say - the individual patient functionality. What is good enough for me doesn't mean for the other person. 

[Cara Mia]

Yes I believe he is unilateral. I was under the impression, the only issue was thinner bone. Don't remember her mentioning any other problems

You can find some extra info in Maoffive's profile. I hope she will come to tell us how all of her questions are resolved.

[Ivana Marinac]

You can find some extra info in Maoffive's profile. I hope she will come to tell us how all of her questions are resolved.

 

Mmmm... Thank you Cara for pointing my attention.

 

This actually change the situation because enlarged vestibular aqueduct (EVA) is usually bilateral but the extent of hearing loss is no reliable way to predict how much hearing loss will occur or how it will (or will not) progress.

[maoffive]

Thanks for your replies. Yes, he does have EVA but they have said that the other ear looks good. So he has a profound sensorineural hearing loss in one ear and the other ear has good hearing. The only contraindication is this thin bone that is between the cochlear and the carotid artery. The surgeon said that even if the actual surgery went well there is a risk that over time the electrode may migrate through the thin bone into the carotid artery. 

 

I do not want to put my son at any unnecessary risk but I (and the audiologist) was surprised that this thin bone would be an issue given that the electrode naturally bends around the cochlear?

 

We are in Australia. I have now requested a second opinion and am waiting to hear back as to when he can be see. I will certainly keep you up to date  .

[Ivana Marinac]

Thanks for your replies. Yes, he does have EVA but they have said that the other ear looks good. So he has a profound sensorineural hearing loss in one ear and the other ear has good hearing. The only contraindication is this thin bone that is between the cochlear and the carotid artery. The surgeon said that even if the actual surgery went well there is a risk that over time the electrode may migrate through the thin bone into the carotid artery. 

 

I do not want to put my son at any unnecessary risk but I (and the audiologist) was surprised that this thin bone would be an issue given that the electrode naturally bends around the cochlear?

 

We are in Australia. I have now requested a second opinion and am waiting to hear back as to when he can be see. I will certainly keep you up to date  .

 

 

Of course - please do.

 

As to the conclusion of your topic I may advise you to consult the surgeon who has experience with the implantation of CI in the case of EVA.

As far as I know, EVA is bilateral but it does not mean that it has to show off now. Also, if it does show off on the other side - it does not have to be shown as the profound hearing loss. Hard questions to answer because situation is not clear. 

Regarding the consulted surgeon - do not blame him, it is better to be safe than sorry.

[Adam]

A second opinion can never hurt. Luckily as you can see, there are multiple options for your child. Please keep us updated

Adam

[maoffive]

No real news yet but we have an appointment with a different surgeon on the 12th of April. I will update when we hear what he has to say.

 

Davina

[Mary Beth]

Best of luck

[Kara of Canada]

That's great!! Good luck!! Fingers crossed it is helpful.

[Ivana Marinac]

Please do - curious what this surgeon will say. Hope it will be a clearer situation for you and your son.