ENT wants labyrinthectomy for Meneires Disease. Do I have to while active?

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bettousai

PEB Forum Regular Member
Registered Member
This website has been a huge help already, but I am looking for more current information.

About a year and a half ago, I experienced sudden hearing loss in one ear, and over that time, my dizzyness/migraines/vertigo has increased to almost daily or every other day. I am not stationed near anything with decent health care and have been referred to DoD 6 hours away and some civilian ENTs about 1.5hrs away.

I have done the vestibular testing through the AF doctors, and they said I moved from possibly Meneires to likely, but my Army ENT wants me to have a labyrinthectomy, and I am currently on physical/hearing profile, and my local PMC will not discuss medical boards without ENT noting my health records that no other options remain. I kept a journal documenting my issues, and the ENT said my hyperacusis was causing my dizziness. I told them I got dizzy without hearing loud noises and had vertigo attacks just getting out of bed in the middle of the night.

I have seen people get discharged for this on the forums, and I wondered if they declined destructive surgeries? I do not have good experiences with military surgeons, and I have read that Meneires symptoms can go into remission later in life I feel this is a permanent "maybe" fix to a possibly temporary problem.

Thank you for any advice
 
bettousai said:
This website has been a huge help already, but I am looking for more current information.

About a year and a half ago, I experienced sudden hearing loss in one ear, and over that time, my dizzyness/migraines/vertigo has increased to almost daily or every other day. I am not stationed near anything with decent health care and have been referred to DoD 6 hours away and some civilian ENTs about 1.5hrs away.

I have done the vestibular testing through the AF doctors, and they said I moved from possibly Meneires to likely, but my Army ENT wants me to have a labyrinthectomy, and I am currently on physical/hearing profile, and my local PMC will not discuss medical boards without ENT noting my health records that no other options remain. I kept a journal documenting my issues, and the ENT said my hyperacusis was causing my dizziness. I told them I got dizzy without hearing loud noises and had vertigo attacks just getting out of bed in the middle of the night.

I have seen people get discharged for this on the forums, and I wondered if they declined destructive surgeries? I do not have good experiences with military surgeons, and I have read that Meneires symptoms can go into remission later in life I feel this is a permanent "maybe" fix to a possibly temporary problem.

Thank you for any advice
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What branch? Active Duty? Reserves/Guard on orders etc. Need more information to give you good advice.
 
bettousai said:
Yes, however, all services are referred due to the limitations of the hospital in a rural area.
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Okay so your Army PCM is the gatekeeper then and they are the ones that can refer you to IDES. Is that surgery the last resort? If so and you don't agree you can get a second opinion and I would request one regardless to see what a different specialist says. The issue is that everything is subjective and some PCM's want to ensure all treatment is exhausted before they will refer you.
 
Provis said:
Okay so your Army PCM is the gatekeeper then and they are the ones that can refer you to IDES. Is that surgery the last resort? If so and you don't agree you can get a second opinion and I would request one regardless to see what a different specialist says. The issue is that everything is subjective and some PCM's want to ensure all treatment is exhausted before they will refer you.
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From what I read, it should be considered a last resort. I have undergone all the tests that come back negative (my understanding is normal with Meneries, other than the hearing loss); now they want me to do vestibular therapy, which the AF doctor told me would be a waste of my time.

The way this Army ENT (who is the second opinion) lists it in my genesis notes is that it is a viable treatment for vertigo but doesn't address any of the other symptoms or even mention Meneries disease, even with the AF doctor's findings.

My PCM said if the Army ENT lists that as a treatment, then if I decline the surgery, that's on me. I feel like destroying my hearing and forcing cochlear implants is not an option.
 
bettousai said:
From what I read, it should be considered a last resort. I have undergone all the tests that come back negative (my understanding is normal with Meneries, other than the hearing loss); now they want me to do vestibular therapy, which the AF doctor told me would be a waste of my time.

The way this Army ENT (who is the second opinion) lists it in my genesis notes is that it is a viable treatment for vertigo but doesn't address any of the other symptoms or even mention Meneries disease, even with the AF doctor's findings.

My PCM said if the Army ENT lists that as a treatment, then if I decline the surgery, that's on me. I feel like destroying my hearing and forcing cochlear implants is not an option.
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How is your relationship with your leadership? Could your commander order you to a fit for duty exam? That would hopefully put you in front of a different doctor to determine if you are unfit for duty due to this condition.
 
I hadn't really considered the option until I got this recent issue as I was hoping this could be treated. I have been open with my local leadership they have been supportive about TDY for treatment. I think I will have to sit down and have an honest assessment of that.

I appreciate the help, since this conversation I have had a couple calls back saying they want a referral to neurology, MRI's and the vestibular PT are being put in. I figured I would have to continue to go to these until my PMC is satisfied, I am on my 6 or 7th PMC here so who knows what that measurement will be by then.

I post if I have updates.
 
bettousai said:
I hadn't really considered the option until I got this recent issue as I was hoping this could be treated. I have been open with my local leadership they have been supportive about TDY for treatment. I think I will have to sit down and have an honest assessment of that.

I appreciate the help, since this conversation I have had a couple calls back saying they want a referral to neurology, MRI's and the vestibular PT are being put in. I figured I would have to continue to go to these until my PMC is satisfied, I am on my 6 or 7th PMC here so who knows what that measurement will be by then.

I post if I have updates.
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they went straight to labyrinthectomy? have you seen neuro-otology at all? I'm on medboard for Meniere's and I went HCZT -> Vest rehab -> HCZT+Diazide and now I'm referred out for neuro-otology and we're talking about a shunt but nowhere near full on labyrinthectomy yet and I have episodes as frequent as you describe too.
 
My first off post civilian ENT doctor referred me to a neurologist who said they could do anything and started the Meneries conversation. I went back to that civ ENT and told me I’ll see you in six months, get hearing aids with no diagnosis. Being a backwoods area I asked for a second opinion which sent me TDY to the Army mil ENT doc who I have seen over last 6mo who had me on nortriptyline and hydrochlorothiazide which did help reduce my frequency/level of severity of my migraines but the AF doctor those were probably a result of my hyperacousis not the tinnitus.

Now I am being referred to TDY neurologist at the same location as my Army ENT because his literal words is that he didn’t trust anyone else’s opinion or work. He is also the one that jumped and continues to note surgery as remedy to my symptoms but doesn’t even speak about Meneries in any genesis notes but all my meds have it listed.

I have boiled it down to keep doing the test and vestibular therapy, but my concern has been my MOS job requirements, h/w and acft.

However I positive note, I just got off the phone with that Army ENT who is calling the PMC to work it out. My assumption was right that I will have to go through therapy to at least show it won’t help so it can be documented.
 
bettousai said:
My first off post civilian ENT doctor referred me to a neurologist who said they could do anything and started the Meneries conversation. I went back to that civ ENT and told me I’ll see you in six months, get hearing aids with no diagnosis. Being a backwoods area I asked for a second opinion which sent me TDY to the Army mil ENT doc who I have seen over last 6mo who had me on nortriptyline and hydrochlorothiazide which did help reduce my frequency/level of severity of my migraines but the AF doctor those were probably a result of my hyperacousis not the tinnitus.

Now I am being referred to TDY neurologist at the same location as my Army ENT because his literal words is that he didn’t trust anyone else’s opinion or work. He is also the one that jumped and continues to note surgery as remedy to my symptoms but doesn’t even speak about Meneries in any genesis notes but all my meds have it listed.

I have boiled it down to keep doing the test and vestibular therapy, but my concern has been my MOS job requirements, h/w and acft.

However I positive note, I just got off the phone with that Army ENT who is calling the PMC to work it out. My assumption was right that I will have to go through therapy to at least show it won’t help so it can be documented.
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Awesome! Sometimes it takes a while to have everyone on the same page. Also, sometimes the docs are right. My wife assumed her headaches were due to the sinus issues since she has had multiple surgeries. After blowing her off PCM for several months she followed her PCM's advice and saw a neurologist. It turned out she had chronic sinusitis AND chronicle migraines.
 
Provis said:
Awesome! Sometimes it takes a while to have everyone on the same page. Also, sometimes the docs are right. My wife assumed her headaches were due to the sinus issues since she has had multiple surgeries. After blowing her off PCM for several months she followed her PCM's advice and saw a neurologist. It turned out she had chronic sinusitis AND chronicle migraines.
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For sure, the AF civilian ENT seems to have the best handle on all my symptoms and diagnosed my hyperacousis but the Army ENT wants the neurologist to rule out officially anything that could be causing my symptoms. He essentially laid it out, he didn’t trust these docs here and wanted someone he worked with to evaluate me. I’m less worried now that I finely got a return call from the actual docs and not the nurses because they have been just reading from my notes. He told me that I don’t have to take the surgery and just have to undergo the testing therapies to ensure they tried everything regardless of medical opinions that it may not work in order to move to med board.
 
These threads have been very helpful. I appreciate everyone's input and experiences.
I am currently undergoing treatment for Meniere's as well and now on LIMDU for it. My episodes are 2-3x weekly and I have had one isolated incident of drop attack.
I have done six weeks of vestibular PT, rounds of HCZT/Maxide, all to no avail. Now ENT wants to do intratympanic steroid injections, and if those don't work, then surgical options.

I am nervous about both the injections and surgical options. Especially by my local military medical. I know the steroid injections are minimally invasive, and instances of eardrum perforation are not common, but it still makes me nervous.

Am I allowed to decline? Will it impact ability to get referred to med board and/or determination for medical retirement if I refuse any treatments? Thanks in advance!
 
charlienc said:
These threads have been very helpful. I appreciate everyone's input and experiences.
I am currently undergoing treatment for Meniere's as well and now on LIMDU for it. My episodes are 2-3x weekly and I have had one isolated incident of drop attack.
I have done six weeks of vestibular PT, rounds of HCZT/Maxide, all to no avail. Now ENT wants to do intratympanic steroid injections, and if those don't work, then surgical options.

I am nervous about both the injections and surgical options. Especially by my local military medical. I know the steroid injections are minimally invasive, and instances of eardrum perforation are not common, but it still makes me nervous.

Am I allowed to decline? Will it impact a med board/medical retirement if I refuse any treatments? Thanks in advance!
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my doc skipped LIMDU and went straight to medboard for my Meniere's. is your ENT civie or military? I would request a neuro-otologist or a second opinion first and maybye try and get formal legal assistance.
 
shankatorus said:
my doc skipped LIMDU and went straight to medboard for my Meniere's. is your ENT civie or military? I would request a neuro-otologist or a second opinion first and maybye try and get formal legal assistance.
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ENT is a military doc. He's been hesitant to render any kind of diagnosis up to this point but my CO got involved and now with LIMDU it forced a diagnosis, so I now at least have Meniere's in the system (ICD-10 Code H8109). I've discussed second opinion option with PCM and they are open to referring out for a second opinion, but at this point I'm trying to find the most expedient path in and out of a med board without getting a needly in my ear drum or surgery.
Wondering if once ENT recommends the injections or surgery, if refusing those treatments can negatively impact med board determinations
 
charlienc said:
ENT is a military doc. He's been hesitant to render any kind of diagnosis up to this point but my CO got involved and now with LIMDU it forced a diagnosis, so I now at least have Meniere's in the system (ICD-10 Code H8109). I've discussed second opinion option with PCM and they are open to referring out for a second opinion, but at this point I'm trying to find the most expedient path in and out of a med board without getting a needly in my ear drum or surgery.
Wondering if once ENT recommends the injections or surgery, if refusing those treatments can negatively impact med board determinations
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have you gotten with any attorney's on this? My (now 3rd) ENT says that surgery would only ever be up to me. Trying one more month of dyazide and then going to do steroid shots.
 
shankatorus said:
Got the steroid today, holy shit I forgot what life used to be like.
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oh wow, how was it!? sounds like it has been effective? have you had any episodes since? if any how does frequency/severity compare to normal?
How did your doc describe the risks of doing this (besides potential perforated eardrum)? Meaning, will you need to do them regularly from now on? Is there risk associated with multiple steroid injections over time? I'm thinking about how I could only get 3 or so steroid injections in my shoulder because beyond that you can damage tissue/cartilage or risk calcification -- wondering if any similar risks were presented to you beforehand?
My ENT seems to think that the next steps are doing these injections, and if no improvement, surgical options -- but that I should not be MED boarded because one of these should reduce symptoms enough to be fit for duty. Seems odd considering everyone else is getting almost immediately referred to a board. Thoughts?
 
charlienc said:
oh wow, how was it!? sounds like it has been effective? have you had any episodes since? if any how does frequency/severity compare to normal?
How did your doc describe the risks of doing this (besides potential perforated eardrum)? Meaning, will you need to do them regularly from now on? Is there risk associated with multiple steroid injections over time? I'm thinking about how I could only get 3 or so steroid injections in my shoulder because beyond that you can damage tissue/cartilage or risk calcification -- wondering if any similar risks were presented to you beforehand?
My ENT seems to think that the next steps are doing these injections, and if no improvement, surgical options -- but that I should not be MED boarded because one of these should reduce symptoms enough to be fit for duty. Seems odd considering everyone else is getting almost immediately referred to a board. Thoughts?
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Oh boi, gotta break this one apart

How was it - honestly nowhere near as bad as I expected, slight earache for less than a day
Has it been effective -I've had one minor episode, significantly less intense than before
Risk description - I'll attach his memo
Interval - 3 shots 1 week apart and evaluate from there.
PEB determination - they said just dizziness is sep worthy. I attached my FPEB determination in it's own thread if you wanna look at it
 

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