Doctors Show No Interest

[ChiGuy]

Need to get something off my chest before I go to bed. Five months ago, I was hit with simultaneous sudden bilateral hearing loss.... VERY RARE.

Simultaneous to that, I also started having eustachian tube crackling and popping. In 5 months of searching, I cannot find another documented case similar to mine (simultaneous sudden middle and inner ear involvement).

Now, what completely baffles my mind is that none of the doctors that I have seen have shown any interest in my situation. Out of the 3 ENTs and 1 top rated ear specialist, none of them said,"Hmm, this is quite unique... let's dig deeper."

God bless those doctors who actually do dig deeper and document their findings in case reports. At the end of the report, there may not be any hard conclusions, but there will at least be theories related to the incident.

Furthermore, the overall incident would be documented.

If information about my hearing loss could help others in the future, it would be such a wonderful thing. In my opinion, this is partly why we don't have a cure for hearing loss and tinnitus.

 

[Lorac]

I had simultaneous sudden bilateral hearing loss too but the right ear recovered. My left ear is deaf. My right ear recovered because I used the valvasa maneuver to unclog it, but I could not get my left ear to open up with valvasa. Do you think that's interesting? Doctors do not seem to think that is interesting. I tried to get help from several doctors in the beginning of this ordeal but none of them seemed very interested in the fact that I am only deaf in one ear because of my own actions.
I had an MRI to look for a tumor but no deeper digging. It's like they know how to remove a tumor but they don't know how to fix anything else, so why bother digging deeper?

 

[ChiGuy]

@Lorac I truly feel for you. Your case is similar to mine and should have been professionally / medically documented. The information in your case could help others. Everyone has their reasons for joining this forum and they are all legitimate. My reason is not so much emotional support but rather to find out what happened to me?!?!? Through this forum, I starting to find others that have similar symptoms as me. My intention is to compare notes with others like me, and if there are enough similarities, to at least document them. By virtue of using this forum to compare our experiences, in essence, is the lowest form of documentation. However, it is more the medical community has done with either of our cases.

 

[GregCA]

My right ear recovered because I used the valvasa maneuver to unclog it, but I could not get my left ear to open up with valvasa. Do you think that's interesting? Doctors do not seem to think that is interesting.

I think it's interesting but I'm unsure that it wasn't just a coincidence. That's because the valsalva maneuver deals with the middle ear, while your SSNHL deals with the inner ear. From a logical standpoint, I don't see how valsalva (which ends up increasing pressure in your middle ear) would affect your inner ear: the only interfaces are the oval/round windows that are going to be bulged in from the pressure and the stapes pulled out from the outward bulging of the ear drum (conducted through the malleus & incus). How that would affect the hair cells or whatever it is that is causing your cochlea's sensorineural deafness is something I couldn't explain.

The doctors may be dismissing it as a coincidence, and perhaps that translates into them looking like they are not being interested.

 

[Lorac]

@GregCA
I agree that the doctors probably dismissed it as coincidence, as many cases of sudden snhl do spontaneously recover. I went deaf in a matter of hours, not seconds. The hearing loss in both ears was initially a partial loss. I could hear in both ears but the sound was distant and muffled. At that point, I was feeling a bit dizzy but no full on vertigo yet. Both ears felt clogged up so I tried valvasa to unclog them. The right ear opened and normal hearing returned immediately but I couldn't open the left ear. It was on a weekend so I just went to sleep instead of going to a clinic. I thought the muffled hearing problem in the left ear would go away as it had in the right ear. The next day I developed full blown vertigo and a stone deaf ear.

In the original post, @ChiGuy suggests the possibility of his own hearing loss involving both the inner and middle ear. I also have feelings of movement, thumping, pain in the deaf ear which seem like TTTS symptoms.

I do know that my right ear opened up while I performed the valvasa maneuver and my hearing came back immediately. Maybe I had spontaneous recovery at that very second but it seemed like cause and effect to me. If I were a doctor, I would at the very least record that chain of events.

 

[GregCA]

I do know that my right ear opened up while I performed the valvasa maneuver and my hearing came back immediately. Maybe I had spontaneous recovery at that very second but it seemed like cause and effect to me. If I were a doctor, I would at the very least record that chain of events.

Yes of course.
The other thing to know is that Valsalva creates a bulging ear drum, which makes it more sensitive to sounds. Anyone pressurizing their ears will feel like they "hear better" until the drum goes back to its original position (at rest).
It happens to me all the time, and was happening to me a lot too when I was experiencing my hearing loss episodes: I thought I was regaining hearing too.
Anyway, it's probably going to remain a mystery for a while (maybe forever), but you are right that it does warrant at the very least a record, and ideally also some brain cell work even if it doesn't lead anywhere.

 

[ChiGuy]

Throughout this journey, I had be my own advocate. It looks like this trend will continue. I will probably be seeing a neurologist and endocrinologist. I am fortunate enough to have an insurance plan that does not require me to get a referral for a specialist.

If I may partake in another small rant.... I am disappointed that when I initially saw an ENT regarding my hearing loss, I wasn't informed about all possible treatments such as supplementing prednisone with vitamins and / or HBOT. Studies suggest that vitamin E and HBOT can help recovery some hearing. I've read that in other countries (meaning other than the US), you get admitted to the hospital for a few weeks when diagnosed with sudden hearing loss. You get first class treatment with all these IVs and tests. If one thing doesn't work, they try another. In the most affluent country in the world, my treatment consisted of a 92 cent prescription.

 

[Jkph75]

There are cases where an infection or virus could affect both the middle and inner ear. In your case it seems that what hit you all at once was the tinnitus, not hearing loss. The hearing loss you have has probably been there for a while. If it had been something like an infection, your audiogram would look different.

 

[InfiniteLoop]

@ChiGuy

Part of the lunacy of this condition is looking for elusive root causes, anything can be suspicious. In a way, people who know exactly what caused the T have one less thing to worry about. I read one of your previous messages, your audiogram has a notch at 4KHz in both ears and that is a typical signature of noise induced damage. Also, I do not see the SSHL definition of three consecutive frequencies with significant hearing loss. The dip in your audiogram at 8KHz probably indicates that your very high frequencies have issues (an audiogram going to 16KHz is very important to get a full picture of the hearing).
Do not expect anything from doctors, they know that they can not do anything about hearing issues in the majority of cases. Unless you have a clear agenda about the tests you want, you will just hit the wall. Stay strong. At the end, we just have to learn to live with it, even if it looks impossible.

 

[Greg Sacramento]

@InfiniteLoop @Jkph75 @ChiGuy and others. I think that all of you have made some good points.

We do need to be our "own advocate" and to be "looking for elusive root causes". Hearing loss including hair cell loss and loud noise, no hearing loss. the structures of the ear, infections and virus, ear wax - and on it goes. Infections can be caused by mold, smoke pollution and all sorts of environmental causes. Noticeable hearing loss from noise may not happen overnight as it can be related to exposures over a period of time.

One aspect that plays into whatever caused a person's tinnitus may be associated with muscle tension and spasms, body posture and nerve reaction that's connects to signals of the DCN and the brain. There's different theories on how this happens, but I was told by a clinical trial researcher who I spoke to once - said this is a major contributor of tinnitus. The neck - spine and jaw tops the list for muscle tension. He also said that spikes are complicated by fear and flight. Of all the research that I have done, I always think about the statements of this researcher. Some that I know to be true having worked in a hospital.

Something else that he mentioned is to start off with simple temporary treatments like soft hand touch to relax muscles and to be careful in judgement with more complex treatments that you are considering. ENTs like MRIs which could be useful, but they know in some cases not. They will still order MRIs regardless and it has nothing to do with self protection. ENTs have practicing rights with hospitals that make profits from MRIs, even as the machines cost millions of dollars.

We know reasons why one can't receive a team of specialists for their tinnitus care. Insurance and time spent on each patient. It may be different in Europe. Some doctors like many in other professions will back each other, but I never met a doctor who was a narcissist as in taking a patient concerns personable. It's not a matter of being in a position of authority to them.

 

[ChiGuy]

@Jkph75 Thanks for your input. It's interesting that my last audiologist was thinking the same thing. She theorized that my hearing loss has been there for awhile and something just pushed it over the edge. Then she compared my first and second hearing test results where I had a 25db drop at 2 frequencies in my right ear. By no means am I a doctor, but through my research I believe that infections and viruses can display a variety of audiogram patterns. For instance, if the route of infection/virus was through the nerve/blood supply to the inner ear, the hearing loss pattern on an audiogram could be flat or "reverse ski slope" (low frequency loss). In this scenario, the infection could cause swelling of the nerve restricting the blood supply to the inner ear. Since the blood supply feeds the higher frequencies first, this could cause low frequency hearing loss. If blood flow is restricted enough, it could impact all frequencies. Another route of infection could be via the middle ear. In this scenario, the infection could permeate through the oval or round windows and make it's way to the inner ear. This windows are just millimeters away from the high frequency portion of the inner ear. This could result in a "ski slope" pattern.

@InfiniteLoop I appreciate your comments. I agree that I don't meet the technical criteria for SSHL. I read an interesting article stating that adhering to this strict criteria for SSHL is actually detrimental for research. The reason being is that individuals that fall just short of the criteria are often left out of case studies and are disqualified for clinical trials. I'll try and find the article and post it. You bring up a good point regarding my 8KHz loss. I may go for a hearing test up to 16KHz. Most importantly, thanks for the encouragement!

@Greg Sacramento As you mentioned, the list of causes are endless. To make things more complicated, the medical community does not even know exactly why most of these causes impact our hearing. They can only theorize in many cases. This creates a big dilemma in finding a cure for hearing loss and tinnitus. How can you search for a cure when you don't even know the cause??!?! This is the one thing that has always baffled me.

 

[Jkph75]

Then she compared my first and second hearing test results where I had a 25db drop at 2 frequencies in my right ear.

Do you mean that there is a 25db difference in 2 frequencies between your 1st and 2nd tests? Or that your hearing went down to 25db in 2 frequencies on the second test?

 

[ChiGuy]

@Jkph75 My hearing dropped 25db in 2 frequencies on the second test. So my hearing went from roughly 5db to 30db.

 

[Jkph75]

@Jkph75 My hearing dropped 25db in 2 frequencies on the second test. So my hearing went from roughly 5db to 30db.

Yeah, that's not normal. Were those the middle frequencies? 3&4K?

 

[ChiGuy]

Yeah, that's not normal. Were those the middle frequencies? 3&4K?

@Jkph75 That is correct regarding the frequencies. Yes, I would agree that my case is atypical. However, if the medical community is collecting data and performing case studies on a strict criteria of SSHL, this could lead to a situation where there are only a few documented presentations of this disease. By way of self-fulfilling prophecy, these presentations then become what would be identified as "normal".

 

[PaulBe]

I appreciate your comments. I agree that I don't meet the technical criteria for SSHL.

I appreciate your comments. I agree that I don't meet the Current technical criteria for SSHL.

That's probably closer to it.

 

[ChiGuy]

@PaulBe .... Pluto used to be a planet

 

[Leodavinci]

none of the doctors that I have seen have shown any interest in my situation

Have you been to; http://dizzy-doctor.com/

These seem like great otologists and ENTs because they do a great job on the website of discussing different perplexing Ear issues and giving their opinion. I've learned a lot from this website.

As for doctors....Especially in the United States. Most of them are dangerous and incompetent. They are part of a broken system with perverse incentives. Most are poorly trained. They are ALL Avaricious beyond the pale - you would have to be to subject yourself to outrageously abusive medical training in the pursuit of being a healthcare worker. Good doctors are possible but weeded out by a sinister and outrageously incompetent health care system. The best medical care I ever received was at a private clinic in Ukraine while on vacation. It was an order of magnitude more competent and empathetic than anything I have ever experienced in the U.S. This is a major reason why i'll be emigrating from the U.S. soon. I have wasted half a lifetime in the pot of slowly boiling water called the U.S.

 

[Leodavinci]

You get first class treatment with all these IVs and tests. If one thing doesn't work, they try another. In the most affluent country in the world, my treatment consisted of a 92 cent prescription.

This is true in some rich Western European countries. In private clinics in poor countries you get the same or better treatment. They won't let you leave a hospital without finding out what is wrong with you. They actually call you back, take your phone calls and can discuss your condition on the phone. U.S. healthcare is not just the worst in the western world. It is one of the worst anywhere relative to private healthcare around the world. Meaning that if you can afford it, you can walk into a clinic in Georgia (the country) be seen immediately in most cases, be asked what you would like to drink and be resting in a beautiful lounge. You'll be treated humanely and compassionately by people who earn 2.5x the average salary, not 15 times like in the United States. The 15x incentive is the most important number in U.S. healthcare - it guarantees recruitment of the greediest people in society.

 

[Leodavinci]

I tried to get help from several doctors in the beginning of this ordeal but none of them seemed very interested in the fact that I am only deaf in one ear because of my own actions.

I'm sorry. I experience the same indifference and incompetence from half the doctors I've seen and it enrages me. We deserve doctors with greater concern for us and with pen to paper organization and great communication skills. I usually just get an indifferent sociopath that does not speak unless spoken too.

 

[Christophe_85]

Need to get something off my chest before I go to bed. Five months ago, I was hit with simultaneous sudden bilateral hearing loss.... VERY RARE.

Simultaneous to that, I also started having eustachian tube crackling and popping. In 5 months of searching, I cannot find another documented case similar to mine (simultaneous sudden middle and inner ear involvement).

Now, what completely baffles my mind is that none of the doctors that I have seen have shown any interest in my situation. Out of the 3 ENTs and 1 top rated ear specialist, none of them said,"Hmm, this is quite unique... let's dig deeper."

God bless those doctors who actually do dig deeper and document their findings in case reports. At the end of the report, there may not be any hard conclusions, but there will at least be theories related to the incident.

Furthermore, the overall incident would be documented.

If information about my hearing loss could help others in the future, it would be such a wonderful thing. In my opinion, this is partly why we don't have a cure for hearing loss and tinnitus.

Totally agree !

As long as they are not concerned, the really don't give a shit !!!

 

[IAmCalifornia]

Doctors don't care unless it's a very obvious problem. Heartless wastes of oxygen they are, like me.