I went to the new ear doc to get the results of the vestibular testing, and I felt like I walked into the Twilight Zone.
He walked in the room with his too big smile, shook my hand and told me something about the test…that didn’t make a lot of sense. He said that it showed that I had reduced cochlea function in both ears. That at my age he would expect it to be a 21, but my right ear is a 4 and my left is a 13. I asked…”What does this mean?” He said that it meant that my cochlea wasn’t working as it should in my ears…well duh. I repeated, “Yes, but what does that cause?” “It means you have vertigo. And you might have this thing called Meniere’s”
WHAT?? I MIGHT HAVE WHAT? DO YOU KNOW WHO I AM? YOU DON’T REMEMBER ME? YOU DIDN’T LOOK AT MY CHART BEFORE YOU CAME IN THE ROOM?
Okay, another reason that whole thing was weird….cochlea function refers to hearing. My cochlea is not going to show up working on any test, I have cochlear implants, I have a device in my head that is coiled around my cochlea that vibrates so I can hear. It doesn’t work on it’s own. And the tests I were given doesn’t even test that. But the numbers he gave me do correspond to the main test that I was given. That was just so weird.
He also talked about a hearing test I had last February, I told him I didn’t have a hearing test last year. He argued with me and pointed to the computer and said, that it said the tests showed my right ear had severe to profound hearing loss. I looked at him and took off my Cochlear Implants and showed him and said, “I have Cochlear Implants, why would I get a hearing test? However, I do have some residual hearing in my right ear, but…” and he interrupted me and said….”That’s impossible, if you have Cochlear Implants, you can’t have any hearing…blah, blah.” Stuart tried to explain to him that with the newest CI’s you often keep any hearing you had…he still argued. Dang-it, I think I know if I can hear or not! When I told him that I wouldn’t need a hearing test I saw the nurse point out to him that the date on the hearing test was not from 2015. It was 2014, shortly after my CI surgery….of course he didn’t put that together, that I can hear out of my right ear, a little bit. And he did not admit to us that he got the date wrong. It’s also very sad that the audiologist that gave me the test knew that the new CI’s are often allowing people to keep some of their residual hearing, she was not surprised that I can hear a little out of my right ear. (I want to explain, I can only hear a certain frequency, I can’t hear much. For example, I was sleeping through the fire alarm at the hotel in December, yet Stuart said it was hurting his ears. So it isn’t much hearing, but there is some there.)
Finally, I got tired of dealing with him. I asked him a couple of questions, which I don’t really trust the answers to now, then I said, “So the plan is, I start Vestibular Rehab, I keep working with my migraine doc to get the migraines under control, keep up the low sodium diet, and taking the Valium twice a day. After I go through the Vestibular rehab we will talk about the gentimiacin injections. That’s the plan.” Then I stuck out my hand to shake his. In my mind he was dismissed. He just had that plastered on smile like he had the whole time, and shook my hand and said, “That’s the plan.”
I saw no reason to spend any more time with that man. It was obvious he did not review my chart before he came in the room. I do not understand how he could not remember me. He told me when I saw him last time that I am the most advanced case he has seen, and how many other patients do you think he has that have been to Duke and John Hopkins? Plus, Stuart and me together are pretty darn memorable. I have NEVER had a doctor make me feel like they didn’t remember me. I “might have this thing called Meniere’s”…geez…are you kidding me? He said a number of other things that just didn’t make sense…like, “I thought you had gentimiacin and it didn’t work.” He just said that I might have Meniere’s and then he said he thought I had gentimiacin injections? dodododo
About the tests….well he only gave me the numbers for the biggest test they did. The Caloric Stimulation Test. (click on the link if you want to learn about the test) This is used to for damage to the acoustic nerve (hearing and balance) and it test the brain stem. It is the only test that test the ears separately. The numbers he gave me fit right in on this test. 21 is normal. He kind of dismissed the 13, I really didn’t understand that. Of course, the one that is really out of wack is the right ear coming in at only a 4. So, I’m thinking when we get to the point of killing off the balance center we will do the right ear first and see if it straightens things out, or makes it so much better I don’t feel I have to do the left.
Now for the big decision, what do I do about this doctor? I really don’t trust him enough now to let him give me a shot in my ear that will kill my balance center. Heck I don’t trust him enough to give me a B-12 shot.
What do I do? I can’t find another ear doctor in this whole city that knows anything about Meniere’s except for the other guy I went to who thinks he is a god. He doesn’t listen to his patients…at least not to me, and according to his ratings on-line and on Angie’s list, he doesn’t listen to most people…he didn’t believe I have vertigo as often as I do. Really? Does he think I use a walker just for fun? Ugh…..I hear stories like this from so many people with chronic illnesses, we have such a hard time finding doctors who are compassionate. I’m lucky, most of my doctors are wonderful, but I’m having a heck of a time finding a good ear doctor since we moved.
I found an ear clinic I would like to go and check out that is close to 2 hours away from here. I have a list of questions for Stuart to ask them on the phone before I even think about making an appointment. If they treat people like it appears they do on their website, I think this would be a very good place to go. They are very well versed in advanced Meniere’s, and they aren’t afraid to treat it.
As you can see, I do believe in being an advocate for myself, but I know when I can’t burn my bridges just yet. I’m also not afraid to fire an incompetent doctor and as soon as I find a new one, I promise this doctor will know why he is being fired and I will write a review on him letting others know what I think. The group does have a good support staff, too bad he is the only one in that group that (supposedly) knows anything about Meniere’s.
Picnic with Ants 
Wendy, look towards SC, specifically Greenville, that’s not too far from you. Also, if you are going to travel 2 hours, you might as well come back to Duke to get the shots done.
I hope you find answers.
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Oh Terry….The doc at Duke won’t do the shots. I’d have to start all over there, or go to UNC or some other place. I suggested all of this to my doctor at Duke a while back and he didn’t do any of it. He said he didn’t think the vestibular rehab would help me. and he wouldn’t kill my balance center because I would be crippled. ummm…like I’m not now? So I can walk around a few days a month now, if I ended up not being about to walk, at least I could use a wheelchair every day of the month.
the center I’m looking at is in Greensboro. Google Maps says 1 hour 40 mins…but I know I’ll have to stop, so 2 hours. This place really looks like they know how to treat advanced Meniere’s. I’m going to go there and at least talk to them and see what they think.
Thank you for still checking on me. I think about you all the time. xo
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My blood pressure is going up just from reading this. Obviously this doctor knows that he serves a niche community, and that he has a lock on the market too. If there were other doctors in the immediate area who covered the same specialty, he would not have as big of an ego as he obviously does because his patient roster would be pretty thin. If this is the only area that you have to travel the two hours for, my vote is yes, bearing in mind I know exactly what that entails – an entire day lost, loads of planning and rest before and after. May the force be with you.
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akiwifreund….
The only thing that has been making me not want to do the 2 hour trip is my hubby having to take me…time off work. Great way to spend those vacation hours huh?
My sister asked if this doctor has Alzheimer’s. I’d hate to think it’s true, but golly.
Thank you for checking on me, I haven’t been around recently, looking forward to catching up with you.
w
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I hope you have better luck with the clinic 2 hours away. It would be worth the drive if they are good and compatible for you. Yes, it isn’t easy to find doctors who know how to deal with chronic pain. I am so glad you have stuart with you for these crazy visits!!
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me too Rita..me too.
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oh no, wendy. I have been isolating but i just read all of your posts and i am FURIOUS with this doc for you. I can’t write much right now, but I want you to know that I plan on writing. I isolated in 2015 for many reasons. I still have unilateral Meniere’s and was so severe-well I’ll tell you more later. But I got gentamicin injection and want to tell you about it. . you sent me an email tand I feel so guilty b/c it was the day before and I was a mess and I couldn’t write you back. I have so much to connect to you about. Please forgive me as life has been rough- health but also relationships. You know those can be hard with chronic illness! I really am furious at how this doc treated you. I went to Mayo Clinic in 2012 and some docs were horrific and one told me I didn’t have Meniere’s. Oh man. Yes, I have MAV, but also Meniere’s and a couple other docs were out of their mind and made me question myself. But I’m glad I realized that there are a lot of docs out there that don’t know stuff and are too prideful to admit it even when they are blatantly wrong. But you keep fighting. Stay strong. I just had a strange appt with an audiologist but gonna talk with her Tuesday and try to clear things up (gonna do some hyperacusis treatment). SO much to catch up with you on. I’m super sick but will get back with you ASAP. I just want you to know how MUCH I care about you and pulling for you. I have talked about you & Stuart and thought about you all of 2015 and Iwant you to know I am praying of you and believe in you & Stuart!. I’m crashing right now-but we will connect. t I am holding onto hope for you. Love you dearly and stuart too. George says “My heart goes out to you.” Know we are cheering you all on!!
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FYI I just read it to George and he said “THAT’S MADDENING!” We are so dumbfounded that he said “You might have this thing called Meniere’s. Oh my Gosh, Wendy! When I read “Youmight have this thing called meniere’s” George said “WHAT?!” After you’ve had time to process it (how ever long you need), shake it off. It will eat you alive if you hold onto this. I know you know this. He’s not worth your time. And I didn’t mean to compare your situation with mine when I said the Mayo Cliic doc said I don’t have Meniere’s. We are in totally different places. You are SO severe. I mean-you have BILATERAL cochlear implants!!!!
I love my neuro-otologist -he was educated at Vanderbilt as was his wife but they live near me.. I don’t know how far away Vandy is from you but I could ask him if he has any recommendations next time I see him. He’s young. I got him right out of school. But he has compassion and understands both Migraines AND Meniere’s and how they are connectedd. Apparently the program at Vandy they are really into making sure patients are being treated for MAV (great Migraine specialist there) and also Meniere’s. Okay-sorry too much. I will write more another time. I wish I could hug you. I hate this for you BUT I have hope and know there is someone out there for you. Thinking positively.
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My darling Kelly, I have so missed you!
I do look forward to catching up with you.
I’m sorry you have been out of contact because you have been in bad shape.
The gentamicin injections we are talking about would be higher than normal, I think.
They are talking about killing my balance center. I am looking forward to hearing your experience.
George is a doll. I love you both so much.
I have a cold…just a little one, but it has caused a bad vertigo flare.
I’ve had vertigo almost non stop for 3 days.
sometimes it is very slow…almost to a stop, but it’s still there, so I can do a bit…like this.
other times it is flying by. It is so weird how I can just sit and watch it now and it doesn’t really make me sick.
I just breathe into it and don’t fight it. and get really bored. Sometimes it still makes me very, very ill.
but it always stops my life. and it is very dangerous.
oh well….that’s the way it is.
Never feel guilty about not being able to email me back.
I should have emailed you again and again, just to let you know how much I care.
but we both have things that are out of our control.
A Adore both you and George!! and want to hear everything!!
I miss you…and know I always care and think about you all the time.
Stuart sends his best to you guys too!!! xoxo
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Wow I understand completely this is not fun. I am glad your husband is there for you as well. Forgive me I forget where you live. When I researched Ear specialists years ago when I was first diagnosed. I read that Tennessee had a really good research dept. I believe it was close to Memphis. I also found sometimes every DR is not the right one for you as I worked in a Hospital for awhile where they were being trained etc. I even talked to one of them about his bad manners and he seemed to change afterwards. While I know I have meniere’s and it is autoimmune related, I rarely have an episode. I really need to get to the ear clinic myself. I cant wait to hear how you make out. Good Luck
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Patricia, Yep, my hubby is a wonder. I’m in Charlotte, NC…so Memphis is a ways. Going into Tennessee from here is hard because you have to go straight through the mountains, not only does it take longer, but it is way too hard on me. I’d be better off going back to John Hopkins. and don’t think I won’t. ha.
This doctor is obviously not the right doctor for me, I require more competence. 🙂 I don’t think he is used to a patient who understands anything about their illness….or anything else for that matter. When I brought out my list to ask him a couple of questions he made some comment about…oh you have a list…type thing with his face looking like…OH here we go, she’s one of those… Yep, I’m one of those. and he is one of those. we don’t fit.
I have also found that sometimes you can see a doctor for a long time and think you fit just fine but it gets to a point where it just runs out…you have to move on..they’ve just done all they can do and they have given up and it just doesn’t work any more, but they are just hanging on.
I do plan on going to the Ear center I talked about. they are in Greensboro, I wouldn’t have thought they would be there, since it is so close to Duke and UNC…but from their site, they really know how to treat advanced Meniere’s. If nothing else, I’d like to know what they have to say.
Thank you so much for staying on this wild ride with me.
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Great to hear looking forward to hearing how Greensboro is.
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My dear friend, the ONLY thing I “liked” about this article is that you were able to write it. I am SO sorry you had to endure this unacceptable level of “treatment” – and that Stuart had to witness it. I’m sure he wanted to punch the guy. His behavior borders on malpractice (the doctor’s, NOT Stuart’s).
What I have to say will be politically incorrect (and, probably, professionally stupid), but I am beyond furious at that d-a-m-n-e-d ego-driven MAN-who-once-went-to-medical-school-and-thinks-the-fact-he-is-a-doctor-is-enough.
I understand why you didn’t, but I really wish you had blasted the guy with the thoughts you shared here. I cannot BELIEVE that he didn’t review your chart before he entered the room – not even a quick scan for you what you HAVE been battling – and to jog his memory about the HUMAN BEING whose health he was being paid to midwife.
“Might” indeed! Had his wits been dulled by drinking? Drugs, perhaps? Or is he simply lazy? I realize the time pressure on ALL doctors these days (thanks to the horror that tries to pass itself off as health insurance), but there are STILL professional standards that other doctors manage to uphold. At the very least he needed (and needs!) to own it and apologize profusely – and swear that he will never to do it again (giving you the right to quiz him about his prep, btw!)
You asked for advice, so here’s mine: do NOT go back to that doctor unless you are willing to be completely honest about your response to the visit you describe above. IMHO, you need to include the admission that his unprofessional behavior left whether you could really trust him with your health in question, since his “research” is so sloppy – even into the history of your case contained in your chart.
Do you recall what I wrote about two of my friends who FINALLY got good care after they blasted their doctors out of their ego-driven (OR lazy) complacency (at least with THEM – tho’ it probably had a positive effect overall)?
I’m not saying that you have to blast him – probably wouldn’t be likely to work, in any case – but he DOES need to hear it if you intend to visit him in the future. I’d suggest a letter, but he’s already shown a lack of inclination toward reading. You could write that letter to the medical board, but I know you aren’t likely to do THAT!
However, I strongly suggest that before you allow him to do ANYTHING that even approaches the potential for permanent results, you really need to discuss EXACTLY how he intends to approach your case in the future. This is not a decision you want to have to second guess in the future.
Easy for ME to say, of course – harder for YOU to do.
xx,
mgh
(Madelyn Griffith-Haynie – ADDandSoMuchMore dot com)
– ADD Coach Training Field founder; ADD Coaching co-founder –
“It takes a village to educate a world!”
btw- PatriciaB is correct – the U. of Tenn. medical school (in Memphis) is excellent. If they have an “ear research” specialty, I’m quite sure it would be very good. But I am unclear of the distance between where you live and where the teaching hospital is located, and really know nothing about what they specialize in these days.
Can you put a call into Hopkins, explain your dismay over what happened, and ask for a referral to ANOTHER doctor? If I have the players straight here, the doc above is the one who wouldn’t administer the tests you thought you needed (and DID, in fact) — and the Hopkins MD didn’t seem to me like he was especially pleased to hear that.
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Madelyn…before you feel left out…I left you a reply last night and it isn’t here. I left if from my tablet..so I’m going to try to figure out if I can find it, or what happened to it before I post another. I am not ignoring you. love ya babe.
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I would never think that. I’m always glad to hear that you feel well enough to be up to posting at all!
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Ok, so I have no idea where that comment went, so here we go again, also from my tablet…so I’ll be short.
I’ll also be short because I feel like poop. Have a cold and it has made Mr. Menieres my constant companion.
There are a couple of reasons I didnt say more to this guy at the time…1, I was having a bad hearing day so I was afraid I was mishearing some things, I later got confirmation from Stuart. 2nd. I need him to get my vestibular rehab…he wrote the orders.
John Hopkins can’t really help me with doctors here. Maybe if there was some world renowned doctor here, but they really only know their little world.
Tennessee, isn’t so very far, but too far for me to go for treatment. Any city would be on the other side of a mountain, and I’m not in shape to travel like that, I could go back to JH easier. I’m going to the clinic in Greensboro, at least to check them out. I like how they handle advanced Meniere’s patients according to their site. Now we just have to see how long it will take to get in there. I just hate Stuart having to take a day off work to take me, and if I have vertigo, that’s a long time to be in a car.
I hope I’ve answered your questions. There’s probably more but I’m brain dead right now…however I really wanted to reach back out to you.
You never sound any way other than like you care and want the best for me.
Oh….I have written letter about a doctor who I felt was on the verge of malpractice….sent to the medical board.
I complained about another doctor to the hospital, didnt have as much proof with him, and I know he was investigated within 6 months.
And I have told more than one doctor to there face when I felt they were out of line.
I’m not afraid. There have been times I haven’t said anything when I should have…mainly because I let it slide at the time then got lazy. We don’t have to worry this time, Stuart will make sure this guy knows why he is fired.
Funny thing, I don’t think most doctors think of themselves as being fired when you just don’t come back. I like to make a point that they would not have a job without their patients and the way they treated me was unacceptable, therefore they are fired.
Okay…gotta rest now.
Getting dizzy up here on my soap box.
xoxo….w
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GOOD for YOU!
I know you are a practiced self-advocate, and don’t need ME to tell you what you’ve known for years. (Ain’t it a bitch they we have to fight for decent treatment – in your case, over and over and over.)
Forgive me if I ever seem patronizing – I just get so ANGRY at those docs that my fingers do the talking before my brain can stop them. 🙂
btw-my comments have been failing to take lately too. Maybe it’s a new WordPress glitch? If so, I hope they find and fix soon.
Sorry to hear you’re health is “spinning” right now (pun intended – tho’ not really very funny). Feel better.
xx,
mgh
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PS. If you DO decide a 2-hour trip will be worth it, ask the Hopkins doctor who would be the best doctor there for your situation before you make an appointment (if it can wait).
I hope I didn’t come across as if I think you are unable to advocate for yourself (I don’t) – as I said, I DO understand why you held your tongue at the time.
But it really isn’t true that doctors can hold our health hostage unless we genuflect – we always retain the right to tell them how they are coming across and ask for more respectful (and, ahem, professional) treatment. (I know you KNOW this – I am merely affirming)
xx,
mgh
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You have my complete understanding. I’ve had to find new doctors this year, and I’m not impressed. Once I get some tests done by one, I’m out of there. The woman training under him was fantastic. He won’t get me the prescriptions I need for pain and anxiety, but today, without discussing the reasons why my cholesterol is high — like it is naturally high, and hey, I’ve been in a funk and binging on sugar, so it’s high and the diet I need to go on (I’ve gained 6 pounds in a month) would lower it — he prescribes statins and that ‘s it. No discussion. So, no pills I need; lots of pills I don’t. He is gonna love me on Tuesday when I come in for my well woman — I’ve decided since he doesn’t discuss, then I’m not bringing along any records to do with dexa bone scans and breast biopsies. He wants to know — he can get the records since I don’t count as a source of information.
Sorry — that was a blast and a rant all my own. But I so get it that doctors just don’t care enough to listen to their patients. We’ve been lucky in the past to have had some empathetic doctors who listened, knew their stuff, and tried to understand. It was like the guy had someone else’s file — not yours.
Good that you took charge. You know more than he does about your condition and the treatments suggested. I agree, can the folks at John Hopkins be of any help in this situation?
How does the clinic in Greensboro seem so far? A better deal?
Any way, I sent you an email the other day with more of my idiotic thoughts (as you have always thought of them before I do), and I hope that you can sort this out.
We do have to take charge. I was so shocked today — I thought I was having a pelvic exam with his assistant. I had received a copy of the report, and scrawled on it was watch your cholesterol it’s high. None of this shut up and take statins crap. So that’s why I’m ranting at the end of your rant. Next time he isn’t going to have it so easy.
We should never give up fighting for our rights as patients. Doctors, I’ve decided, are bullies — they act the same as bullies, demean, push around, instill fear, make us question ourselves. So, if a doctor is incompetent, or tries to tell us what to do without consultation, time to say “NO” the way we need to say NO to bullying in the workplace, the school yard, the play ground, the mental and medical health system.
Now, I’ll shut up.
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tale weaver….Rant all you want!! this is worth ranting about. And yeah…statins really?? without consulting you at all? Geez!
No John Hopkins can’t help find me a doctor here. They don’t know doctors outside of their little world. 🙂
I haven’t talked to Greensboro yet, hope to soon. The site looks like they can really treat advanced Meniere’s. Of course, there really isn’t but so much you can do for it, but it is obvious they know what you can do. and it seems they do it well….I really like the way it is written up, I’ll have to send you the link to the page.
Are you really going to have to see him for your well woman exam?
oh my goodness tell me no.
email me about that.
I’m having vertigo A LOT recently, so if I don’t get right back…you know.
I’m having some slow spins now.
loves ya
w
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Ohh my WORD !!! I can’t say this surprises me. It actually sounds all to familiar ! I am so sorry.
Have you started Vestibular rehab?
Sent from my iPhone
>
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Hi Carina…I hate that this sounds so familiar to so many of us.
Ugh.
I was supposed to start Vestibular Rehab on the 12th but I have a cold.
Vertigo has been keeping me company almost non stop for a while, so I start on the 28th.
I’ll get there, one day at a time, eh?
xo….w
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I don’t really think about it until I’m experiencing it for the umpteenth time, but incompetent doctors make me rage from 0 to 100 in less than a second. I ditched that shitty psychiatrist because of it. Two times and him not knowing what in the damn hell he’s doing but being cocky about it was too much for me. Incompetent doctors are the #1 reason I switched to Psych, but I’ve said that before. I hope your health settles as a weird karmical way to thank you for putting up with idiots.
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The good medical doctors treat you like a real person – and for goodness sake – read the chart to update their own memory before they walk in! I’ve had doctors like this though and really feel for you. (I had an ENT that told CI’s wouldn’t restore my hearing because I have sensorineural loss) Duh.
I did vestibular rehab and am going to ask for some more sessions this summer. The way they do it HERE, is that you have to go 2-3 times a week. I had a $15 co-pay every time I went. So between the expense and the amount of time it took, it was tough. Plus, I often had to have a ride to and from since I was a mess after the rehab. Let me know about your experience with it.
Hang in there! You ARE your own best advocate!
Denise
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