Diagnosed with Endolymphatic Hydrops

[Quiet please]

My ENT recently diagnosed my tinnitus as Endolymphatic Hydrops through an MRI with & without contrast. So far, it's not Ménière's disease because I do not get vertigo.

I did vestibular PT, was prescribed a diuretic and basically told there is no cure. But some casual research has shown there are a few surgical options.

Has anyone had successful surgery for this condition?

 

[Chinmoku]

There is an Italian ENT who developed a non-invasive protocol for hydrops. Google "La Torre" and hydrops and you should find the link to his page. Worth a look. He uses a combination of water, mannitol, diet, steroids, psychiatric drugs.

One Ent diagnosed me with hydrops but two other ENTs disagreed.

May I ask you what your diagnosis was based on? Audiograms alone? MRI with contrast liquid? Cochleography?

 

[Quiet please]

@Chinmoku

I had an MRI with contrast, vestibular testing, audiograms and discussion of symptoms and my entire medical & history of my tinnitus. She prescribed s diuretic, a no salt diet and 6 weeks of vestibular therapy.

She was a new ENT to me & was highly recommended by my neurologist. With that said, she had a very dry & clinical personality with no compassion nor was emphatic. I just didn't like her bedside manner and general demeanor, so there is a tendency to not believe her. I know that sounds slightly bizarre, but I'm a warm & fuzzy type personality and I just did not click with her. I'm going to get a 2nd opinion on this diagnosis.

I haven't read about Dr. LaTorre, but have seen that there are some surgical procedures to relieve the pressure in the sac. My Tinnitus is overwhelming since an auto accident 2 years ago. I'm getting desperate and am willing to undergo surgery to make it just stop. I'm in the USA in New York and am willing to bet they perform these procedures in a teaching hospital.

Just wanted to know if anyone had a successful or semi-successful procedure.

 

[Chinmoku]

I'm in the USA in New York and am willing to bet they perform these procedures in a teaching hospital.

Just wanted to know if anyone had a successful or semi-successful procedure.

I found this online. Yes I believe you could find this in NY. There are risks, as with every procedure. I take it you suffer from balance problems too?

What is endolymphatic sac decompression?
Endolymphatic sac decompression is a treatment that is performed to maintain the hydrostatic pressure and endolymph homeostasis in the inner ear for patients with Meniere's disease.

This procedure can reverse the damage to the ear while maintaining the balance of your hearing levels.

Who is a candidate for endolymphatic sac decompression?
Endolymphatic sac decompression is most appropriate for patients who are experiencing vertigo attacks associated with Meniere's disease. In some patients, it is performed to stop the progression of hearing loss.

Risks associated with endolymphatic sac decompression
Complications can arise during endolymphatic sac decompression surgery. Complications may include:

• Vertigo — in some cases, vertigo attacks may not improve or even worsen
• Hearing loss — in some cases, hearing may worsen
• Tinnitus — in rare cases, you may experience more ringing in the ear after surgery than before surgery
• Facial nerve injury — while a facial nerve injury is rare, it can occur after any surgery in the ear
• Leaking spinal fluid — while this is very rare, it can lead to meningitis

What to expect during endolymphatic sac decompression
Endolymphatic sac decompression can be performed on an outpatient basis or in an ambulatory surgery center under general anesthesia. During the procedure, your doctor will make an incision behind the ear and open the mastoid bone. The bone will be removed to reveal the endolymphatic sac. The bone is then removed from the sac and a laser will cut a hole in the outer layer of the sac. A shunt will be inserted into the sac. Once in place, the incision is closed. The procedure takes approximately 90 minutes.

You will be moved to a recovery room where you will be monitored until you wake up. If everything looks good, you will be discharged an hour after the procedure.

Recovery from an endolymphatic sac decompression
After surgery, you may experience pain. Talk to your doctor if over-the-counter medications are not effective in relieving your pain.

Most patients return to work the day after surgery. Your hearing will gradually improve over the course of a few weeks and eventually return to normal.

Results from endolymphatic sac decompression
Endolymphatic sac decompression has proven to be an effective treatment for patients with Meniere's disease who are experiencing vertigo. It is most effective in patients who have light to moderate hearing loss.

 

[GregCA]

I did vestibular PT, was prescribed a diuretic and basically told there is no cure. But some casual research has shown there are a few surgical options.

It may be wise to try the non invasive options first... Surgery is no walk in the park.

 

[Quiet please]

@GregCA
Yes, I'm realizing that now. Thank you!

 

[OnceUponaTime]

Hi @Quiet please,

What sounds do you hear? Hissing, humming??

 

[Quiet please]

@OnceUponaTime I have many different sounds, ranging from a low rumbling truck to a high-pitched helicopter sound. Hissing, tea-kettle, static & wind blowing in-between.

 

[OnceUponaTime]

I have many different sounds, ranging from a low rumbling truck to a high-pitched helicopter sound. Hissing, tea-kettle, static & wind blowing in-between.

Hey @Quiet please, sorry you have to suffer with tinnitus. The low drone can be very disturbing.
Did the diuretics and low salt diet helped you? Are you taking any anti-anxiety meds?

I'm also in NY, feel free to PM me anytime, ok.
Wishing you quiet days.
Once

 

[Quiet please]

Hi @OnceUponaTime, It's actually better these last few days. My new ENT recommended a different type of hearing aid.

It's called Phonack Audeo M (Marvel)

Its helping allot. The T has retreated (so far) to the background and the audio is now all in my good ear. Little too techie for me to really understand, but I'm better. I do take an anti-anxiety pill at bedtime (Xanax) and that helps me fall & stay asleep.

I appreciate your offer to help; thats very kind. It's tough to have this condition and for people who don't, to actually "get it". It can be isolating and difficult to go out and socialize. I'm in Westchester County, NY. Whereabouts are you?

 

[OnceUponaTime]

@Quiet please Good to know you are doing better with the hearing aids!!!
Do these new hearing aids actually help you mask the low drone?
I'm in Orange County.

 

[Quiet please]

@OnceUponaTime, Yes there is a masker, but that's not my real helper. I had a masker on hearing aids I wore for 5 years and they never really helped the tinnitus. They helped the hearing & did their job; they masked the tinnitus. But masking isn't necessarily the answer for everyone. The bigger deal for me is the bi-cross feature. In my case, I have one really bad ear with both hearing loss, static, fullness and the tinnitus. The bi-cross feature shifts my minimal hearing (about 30%) over to my good ear giving the bad ear a much needed break. It resets it and I believe changed or helped to change my neuropathways. I felt it right away, but it really took about 3 weeks to get to the point where I actually felt physically better. I have the Phonak Audeo M50 brand, but I'm sure there are others. My insurance paid for about 1/2 of this brand. I bought it with a 60 day trial, but never looked back. All the best!

 

[Blondie08]

I read all these post and I feel your pain! I'm beyond upset. No one ever heard what I have been experiencing for the past two months!! It started with a lot of mucus like a cold!! It's full ears feeling /hot/ and hissing! Been to ent!! On antibiotics/which sent me to the moon!! Was in hospital over the weekend! Did cat scan/ mri ! Nothing in my brain!!! One doc said sinus/ another said - allergies/ another said TMJ!!! Went to dentist!! No TMJ !! Doing allergy meds!! It's three in the morning and can't take this fullness hit hissing thing going on !! Anyone ever have this? Thank you !!

 

[Quiet please]

@Blondie08, Sorry you're going through this. The beginning is the very worst part because we feel so afraid and beyond upset. My advise is to try your best to stay calm. For me, this involved taking prescribed Xanax for a while. Anything to help you not panic will do. Anxiety absolutely does not help this situation one bit; in fact, it can make it seem & become worse.

Have they prescribed a diuretic? That helps some people with the ear fullness. Have you had your hearing tested? Even if you don't have hearing loss that you notice, you might want to get a baseline test. Lastly is your diet. Many will recommend watching excess salt, sugar, alcohol and processed foods at this point. Many reasons why you have these horrible symptoms, but also many reasons why it can be made worse. If you get a handle on those, you can begin to help yourself. I wish you all the very best.

 

[DebInAustralia]

My ENT recently diagnosed my tinnitus as Endolymphatic Hydrops through an MRI with & without contrast. So far, it's not Ménière's disease because I do not get vertigo.

I did vestibular PT, was prescribed a diuretic and basically told there is no cure. But some casual research has shown there are a few surgical options.

Has anyone had successful surgery for this condition?

You've probably read this, but have you found the Ohio Protocol?

 

[DebInAustralia]

I found this online. Yes I believe you could find this in NY. There are risks, as with every procedure. I take it you suffer from balance problems too?

What is endolymphatic sac decompression?
Endolymphatic sac decompression is a treatment that is performed to maintain the hydrostatic pressure and endolymph homeostasis in the inner ear for patients with Meniere's disease.

This procedure can reverse the damage to the ear while maintaining the balance of your hearing levels.

Who is a candidate for endolymphatic sac decompression?
Endolymphatic sac decompression is most appropriate for patients who are experiencing vertigo attacks associated with Meniere's disease. In some patients, it is performed to stop the progression of hearing loss.

Risks associated with endolymphatic sac decompression
Complications can arise during endolymphatic sac decompression surgery. Complications may include:

• Vertigo — in some cases, vertigo attacks may not improve or even worsen
• Hearing loss — in some cases, hearing may worsen
• Tinnitus — in rare cases, you may experience more ringing in the ear after surgery than before surgery
• Facial nerve injury — while a facial nerve injury is rare, it can occur after any surgery in the ear
• Leaking spinal fluid — while this is very rare, it can lead to meningitis

What to expect during endolymphatic sac decompression
Endolymphatic sac decompression can be performed on an outpatient basis or in an ambulatory surgery center under general anesthesia. During the procedure, your doctor will make an incision behind the ear and open the mastoid bone. The bone will be removed to reveal the endolymphatic sac. The bone is then removed from the sac and a laser will cut a hole in the outer layer of the sac. A shunt will be inserted into the sac. Once in place, the incision is closed. The procedure takes approximately 90 minutes.

You will be moved to a recovery room where you will be monitored until you wake up. If everything looks good, you will be discharged an hour after the procedure.

Recovery from an endolymphatic sac decompression
After surgery, you may experience pain. Talk to your doctor if over-the-counter medications are not effective in relieving your pain.

Most patients return to work the day after surgery. Your hearing will gradually improve over the course of a few weeks and eventually return to normal.

Results from endolymphatic sac decompression
Endolymphatic sac decompression has proven to be an effective treatment for patients with Meniere's disease who are experiencing vertigo. It is most effective in patients who have light to moderate hearing loss.

@Samantha R

 

[Quiet please]

@DebInAustralia

I have heard of it, but have not tried it. I'll check it out. Thank you.