Temporary results

The success I had with the steroid injection has nearly completely worn off.  Tinnitus is back & constant.  Worse is that the hearing in my left ear is diminished again.  Not quite as bad as before but certainly down.   The hearing aids work to compensate.  Don't know if I can have another injection or if its even worth it for the temporary improvement.

Dr Gopen UCLA & Success w Steroids

Getting to the UCLA medical campus is an adventure all by itself.  Crowded freeways and streets.  Garmin got us to the building.
Dr Gopen met with us for 20 mins, I guess.  I didn't keep track but I talked a long time of where I have been since first developing tinnitus,  Dr Hegarty and the ENT I tried in SLO.  He discussed Meniere's disease at length, giving more detail than Dr Hegarty did.  Subgroups, new imaging revealing new anatomy that is insignificant in actual treatment of people and he discussed my audiogram in detail that Dr H never did.   Overall, he didn't have anything new to offer me and besides much more detail, he didn't tell me anything I didn't know.  Meniere's is a mystery, treatment is a guess and when I am dead, my temporal bone can be donated for research.
He offered the steroid injection and I said yes.  It was what I came all that way for.   That sucker hurt more than when Dr H did it.  I believe he put an extra volume in.  I never tasted it when Dr H did it, either.  I laid there with the ear up for thirty minutes and then walked out.  Just like that.  He had already moved onto his next patient.   He gave me his card with an email and said that if I wanted another injection, to email and he would squeeze me into his clinic.
By that evening, I had a large improvement in my hearing and turned off my aid.  I didn't notice until after that the tinnitus was gone.    So, apparently, I am in that subgroup he talked about that responds to steroids.   Lucky me!
Being in San Diego and visiting, we ate out a lot.  I know I had some meals that went way over my salt allowance.  I took double diuretics and flushed with a gallon of bottled water.  The tinnitus is back at a low volume 36 hrs after the injection but I think the hearing is still good.  No hearing aids all day.  I turned them on for a bit today and it was just too loud.  
I'm going to contact the SLO ENT one more time and see if he or one the partners will reconsider doing the injection here in SLO and save me the drive to LA.

UCLA is a long way away

My insurance plan authorized me to see a Neurotologist at UCLA.  I looked up Dr Gopen, both his website at UCLA and on Healthgrades.  He gets high marks.  A young guy who somewhat resembles Dr Hegarty.  This will probably be ok but it is nearly 4 hrs away.  I have a 9am appt so I will either have to get up really early or drive down the night before. My hearing has been down.  I  had a little improvement with the steroid blast/taper but the last couple of days have been poor.   I went to Costco to get my HA adjusted.  Added a program with just a little more volume.  I'm having trouble hearing a few people at work.    This is frustrating.

Dr Sajjjadi-Neurotologist

From: Hamed Sajjadi [mailto:drsajjadi@earandsinus.com]
Sent: Saturday, August 04, 2012 5:50 PM
To: Muratet, Alan - AGCH

Cc: Leslie Gutierrez; Vanessa Castro; Azar Sajjadi; Ali Sajjadi
Subject: Re: Urgent

Dear Alan,

I'm a Board Certified Neurotologist with special interest in Meniere's Disease and over 20 years of experience. I do give Intratympanic high dose steroid perfusion for Meniere's Disease. Our office is located in San Jose, near the city of Los Gatos. You could call our office and make an urgent appointment to see me this week.

However, as you may have been told in the past, there is no guarantee that steroid perfusion will restore hearing in Meniere's patients. I offer this method frequently to our patients, but data on it's efficacy is not conclusive and experts differ on it's value. Even though it seemed to have helped you in the past, it may not work for you this time around.

Meniere's disease is a very unpredictable disease, with natural fluctuations in hearing. Often times, one treatment or another may "coincide" with a hearing gain or drop, even though it may not have been a cause and effect relationship.

Having said that, you could receive ITT Dexamethasone at my office this week if needed. You would have to do the following:
1. Call 408-358-8507, after 9 am on Monday and ask for an urgent appointment with Dr. Sajjadi
2. Bring all your old records dealing with Meniere's Disease, i.e., any Hearing tests, CT or MRI's, ENT/Otologist office notes, etc.
3. Purchase high concentration Dexamethasone at our compound pharmacy, Silicon Valley Pharmacy on Winchester Ave, in Los Gatos. The pharmacy would charge you about $200 for a multidose vial, which would be good for at least 6 injections.
4. If you have no insurance, then be prepared to pay cash for the office visit and any perfusion sessions.Please discuss the cash price with my office when you call on Monday. You would need to ask the cost of a new patient Consultation, Audiogram and Middle ear perfusion. The first visit would take you 2.5 hours. Follow up visits are shorter and less expensive. Each follow up perfusion session lasts 45" or more.

I hope this information helps. Please let us know what we can do to help you.

Best wishes,

Hamed Sajjadi, MD, FACS
Clinical Associate Professor,
Otology / Neurotology - Skull Base Surgery
Stanford University School of Medicine
President, San Jose Ear & Sinus Medical Center
408-358-8507
Fax: 408-358-8506
hsajjadi@ohns.stanford.edu
www.earandsinus.com

On Fri, Aug 3, 2012 at 2:46 PM, Muratet, Alan - AGCH <Alan.Muratet@dignityhealth.org> wrote:

I am recently relocated to the San Luis Obispo area.  I have had intratymp injections of dexamethasone from my former Neurotologist and I had improvement in my hearing.  I saw a local ENT on my insurance this week and my audiogram is way down from the last time.  The physician I saw does not do IT injections and I have not been able to find one in the area or on my health plan that does. 

I was receiving great care and preserved my hearing up to this point.  I am only 52 and still need to be able to hear.   I called my former physician in Colorado and he agreed to order a Prednisone blast/taper over the phone.    He has had me on Diamox and Lasix for 6 months. 

Can you provide IT steroids and care for my Menieres?   I am willing to be a cash pt initially. 

Please get back to me as soon as possible.  I fear that if my Menieres is left untreated, I will certainly go deaf in that ear. 

Alan Muratet

RN, Clinical Documentation Specialist

Arroyo Grande Community Hospital

Dr Stewart

    Went to seean ENT on my health plan.  I had my doubts going in.  Dr Stewart said plainly on his website that his interest was neck surgery.  I called every ENT doc on the central coast, including some that were not on my health plan, to verify if they offered the services I was receiving from Dr Hegarty.  None of them did.   But, I gave my insurance plan a shot.

Dr Stewart didn't even look at my audio until I brought it up near the end of the visit.  He had his agenda and it didn't include treating me with an  aggressive bent towards preserving what function I had.  In fact, he suggested we go ahead and do the Gent injection to kill the ear.  He focused on my least problematic symptom, the vertigo.  He said that IT steroid injections are not proven to work (inconclusive results
on that one.  It did work for me so that is 100% success rate).

New audiologist

New doc had me test with office audi.  Routine.   Not impressed by her.   My take on the test is that I am bad off.  I had a lot of quiet on the left side.   MD tomorrow.

Steroid blast

It's been a week on the prednisone and I think there is some improvement. However slight and subjective. Tinnitus is slightly better (something I noticed is a fluctuation in the frequency of the ring-that's new). Vertigo has been controlled. Audio appt tomorrow and see the new doc in two days. I went on the new doc website, there was a contact us button and sent an email to my new Dr explaining my acute change. He wrote back the same day and got my initial appt moved up three weeks. Appreciate that.

Dr Hegarty

Desperate and scared that I am suffering more permanent damage to my hearing, I took a chance and called my old doc in CO. Surprisingly, he called me back personally. He was concerned that I might need a steroid injection in the ear but he agreed to fax an rx for prednisone. My own, unmeasured assessment of the hearing in my left ear is that it is at its worst. Constant, loud tinnitus and when I plug my right ear, I cannot hear any high freq. I'm really worried.

Instability

I've been following my diet well and drinking plenty of water and yet, I'm still having problems. I have had some brief episodes of motion sensitivity the last few weeks; mostly just a fleeting feeling of dizziness when I would change position. I always recovered in an instant. My tinnitus has been worse recently too; loud and high pitched. Today, I had a sudden onset of dizziness after turning my head. It lasted more than an instant and in fact, progressed to nausea. I sat at my desk for a few minutes but it wasn't passing so I took some meclizine. The med knocked me out for 30 minutes. My first ENT appt isn't for another two weeks. I hope I'm not losing ground w my hearing and vertigo.

Another Vertigo

I had some bad diet choices at work last week.  Pizza & baked treats.  It was a party at work and I skipped my home made salad for the goodies.  The next day, there was an open forum and the hospital provided more pizza.  By Thursday, I was spinning.  Standing next to someones desk and all of a sudden, the room shifted left, then right.  I had some prodromal symptoms of low energy and no appetite.  Thought I was getting a bug.  Didn't put those symptoms together until I had the vertigo.  
I had to sit down and conclude the meeting in a chair.   Limped back to my desk and popped the Meclizine. I was tired the rest of the day.    Flushing out with water and diuretics.
I was hoping to back off on the diuretics some but it doesn't seem like I will be able to.  My insurance is active now and I have an appt with my PCP next week, then I will get a referral to ENT.

Managing symptoms

Another trip, another exercise in diet control.   Flew out to NM to see Adam graduate from college.  Requested that the party food include something unsalted for me.  I think I did pretty well and made good choices.  Still, Sunday I was feeling a little dizziness, not anything disabling but more like I was starting to get a bug.  Decided to use the Meclizine.  I still had some trip to go and didn't want the symptoms to progress any further.  Monday & Tuesday, I noticed my hearing wasn't up to par.   Flushed out with lots of water, as usual.
Still have a couple of weeks before the insurance kicks in.  It will be weeks after that when I will be able to get into an ENT for my first visit here in SLO.     Hanging on.    Drinking a couple of liters a day to keep the Na always flushing out.

Dizziness

Had some intervals of vertigo yesterday. They only lasted a few seconds but came & went all day. No nausea, just a quick spin and then I was able to get it under control. Drank a lot of extra water and flushed. Improved by the end of the day and no symptoms today.

California

Relocated to the Central Coast this week. Traveling required some creative eating out. Tried to make good choices but the first breakfast, the omelet bar was dished out of a bowl of egg mix. It was probably out of a carton and high in sodium. We had a Bentu box for lunch. It was curry on rice. Thought I was ok. Next day, driving out of Vegas on the 15, I had a sudden attack of vertigo, just once. Driving a 20 ft truck at freeway speed and all of a sudden, the world shifts sideways and back again. Whoa! Pulled over quickly and drank a liter of water down. Took a meclizine. Not a whiff of symptoms since. Taking my double doses of diuretic and lots of h2o.
Arriving in Los Osos, Mom is in her social mode. Wants to put out Hor devours and have happy hour. She doesn't understand that I can't eat pickled asparagus, crackers and cheese. Annie is being a pain by telling everyone about my dietary restrictions. I'm hoping that when I start work and get into a routine, then my dietary habits won't be a topic for conversation.

Back at Zero

Appt w Dr Hegarty today. Audiogram within 5 points of my best. Seemed great to me but doc put the bad spin on it. He said the fact that it took the Prednisone to break the inflammation is a bad sign. The cochlea is angry and labile. Doc wants me to go six months without any problems. He said that time gives the cochlea a chance to normalize to a new high normal. The membrane of the structure stretches and accommodates to the current pressure, thus becoming normal again. If I can go six months, then we can look at weaning the diuretics. He ordered labs to check my kidney function. We also discussed the Tinnitus. High pitch is permanent damage to the nerve. That's what I have. Volume is an indication of inflammation. During my last flare up, I had a few episodes of it being really loud, even waking me up. It is never going away. He said next appt in six months unless something changes. I didn't tell him I was leaving town.

Setback part three

Awakened at 4am with the old, familiar high-pitch ring. LOUD. Loud enough to wake me up. Day 6 of the oral steroids. Hearing seems better but the tinnitus is unchanged. Doctor is in surgery mondays. Going to call the office anyway and see if he will be available in the afternoon. I want a more aggressive approach. My time with this doc is limited. Leaving town in about 20 days. We must get this variability under control.
The prednisone & potassium is tearing up my gut. It's hard to stay positive with these setbacks. Still worried about how this is going to effect my working life.

Didn't call the doc after all.   the dose of prednisone and diuretics decreased my symptoms so I let it ride.

Setback part two

After a week on the double diuretics, I was having no improvement in the hearing or tinnitus. I called the dr and he added a rx for prednisone. I've been on it for two days and already have an improvement. Not back to where I was at my best but better. I realize that this hearing problem & all it's connotations on my life and threats to my job have been a huge stressor for me. That stress plus the details of moving, getting a new job, siblings, etc. I've been running on fumes for months and it finally hit a wall yesterday. I forgot Annie's 55th birthday. Completely spaced on it. She gave me an obvious clue when I called her for something else and suddenly, everything became focused. Today, I feel like I have re-booted my brain. Calmer, centered, in love with my wife. Maybe this is what it feels like to hit bottom before pulling yourself out of a death spiral.

Big Setback

Made an appt w Dr Hegarty a month ago intending it to be my exit from his care. It was preceded by a week trip to visit mom, interview & rescue diver. That was a week of eating out and not following my routine. I noticed mid-week that my tinnitus was louder. By the time I got to Phx for the dive class, my hearing was bad. How bad I had no idea.
My audiogram was the worst ever. Worse than when I started seeing the doc. He was very concerned but encouraged that I had not experienced any vertigo. Explained that the increased tinnitus is a symptom of a cochlea under pressure. He had never told me about that correlation. Vertigo would have been more serious requiring agressive therapy. Could have needed steroid injections into the ear to calm down the inflammation. Said the treatment was diuretics. Lots of diuretics. Doubled my dose for the next two weeks. He said that it's bad that I need to bump up my diuretic because I may not be able to get back to a lower dose.
It's been a lesson to stick to my dietary regimen. In the future, he said I should take an extra dose of diuretic when I feel the symptoms of increasing tinnitus, fullness and decreasing hearing coming on.
Three days now of extra diuretics. There is a slight improvement.

Glaucoma follow up

Pressure came back @ 10. Whooopie. Dr prescribed a different drop because the starter sample was making me looked stoned. Red & swollen eyes. This is for the rest of my life.

I'm falling apart

Had a six month follow up to my annual eye exam. Completely forgot that the pressure was elevated at that visit. 25. Still elevated at this appt but more important is that the testing is showing deterioration of the optic nerve and visual field. Started on drops. Back tomorrow for a recheck.
As for the vertigo, I've been having some mild symptoms recently. Only change I can think of is not hydrating like I have in the past. Not drinking my liter of water everyday to flush out. The diuretics haven't been producing the annoying frequent bathroom visits but I haven't been filling the tank. Took a meclizine for the first time in months tonight. A little nausea.
Oh wait. It was probably that meal at Zio's Italian Kitchen. It seemed pretty salty with all it's creamy cheesy sauce. I had four ice teas with it but didn't pee for hours after. That was probably it. The timing was right too.

Stable. See me in 6 months

Well, saw Dr Hegarty and my hearing had improved and stabilized in the low range.  He was happy.  The high range will never come back.   No changes to the diuretics.   Not seeing him again for 6 months. 
The constant tinnitus is going to be chronic.  The high pitch is indicative of irreversible damage.   Oh well.     It could be Cancer.