My Visit to John Hopkins

A couple of months ago I applied to be seen at the vestibular clinic at John Hopkins Hospital.  My records were sent, and an appointment was set up for December 27th, then it was moved up to December 11th. I must say, that was just fine with me.

I was scheduled to have a hearing test, and an Electonystagmography (ENG) test before seeing the doctor, but the doctor had to leave at 2pm (before my original appointment time) so he wouldn’t see the test before he left, so we asked if I could take the test at home.  You see, I had to stop any medication that might help with vertigo attacks before the Electonystagmography (ENG) test, if I didn’t have to stop these medications while out-of-town, I sure didn’t want to.  They said no problem, and I sure was glad.  I spent all of Thursday with vertigo, it was slow but it was there, I can’t imagine what it would have been like if I hadn’t been able to take my meds.  I also had an attack right before my appointment on Friday.  I had very little balance when I saw the doctor and my vision still wasn’t clear.  So he saw me when I was not doing well.  I think that’s a good thing.  How many times have you been to the doctor and all of your symptoms just magically disappear right when you get there?  That is so frustrating.

When we walked into the Outpatient Clinic it was like walking into an airport.  You checked into the front desk, we both got arm bands to prove we belonged there.  There were all kinds of signs and lines and directions, it was a bit to take in all at once.  Stuart said we were told where the elevators were (no I couldn’t hear much in there) and off we went.  When we got where we were supposed to be, I was very impressed that the check in and out areas were looped.  If you don’t have hearing aids of CI’s you won’t understand that.  If your hearing aid or CI has a telecoil setting, then the hearing loop provides a magnetic, wireless signal that is picked up by the hearing aid or CI when it is set to ‘T’ (Telecoil) setting, and the person using that setting can hear the voice right in their ear, no background noise or anything…it is really cool. So, we checked in and were told to go to the little waiting room in the back….that’s when it started to look like just a normal hospital setting.  The little waiting room, wasn’t all that little, but it wasn’t all that big either.  We were early, because I HATE to be late.  My first appointment was to get a hearing test…(snicker).  But soon a very soft spoken woman came out and said the doctor wanted to see me first, at least that is what Stuart told me she said, I had no idea.  She took my vitals, she asked for my weight and height…I got it mixed up as to which one she asked for first, because I couldn’t hear her and I was guessing.  Soon the doctor came in…..

We talked a bit about my history and he gave me some tests while in his office.  A bit of touching my finger to my nose and then to his hand, turning my hand over and over….ect. Some I could do okay, some I had trouble with.  Then he said he was sorry but needed to shake my head a bit.  I did not do well with that one.  I had to look at his nose while he shook my head.  One time when he shook my head Stuart said he saw my eyes jerk, he said it was “kinda freaky”.  The doctor asked me to stand up and I staggered a bit, he said never mind, sit down, be careful.  I guess that answered that test.

He then said he wanted me to have the hearing test and come back in to see him.  So I went out.  I still thought it was kind of funny getting a hearing test because I’m deaf.  I can hear a tiny bit in my right ear, but it is so little you may as well say, I can’t hear anything.  Soon the doctor comes to the waiting room and said, the Audiologist said that since I have cochlear implants she couldn’t give me a hearing test.  Yes, I kind of giggled inside.  Stuart told them over on the phone that I had CI’s and a hearing test was kind of unnecessary, but they said it was ordered.  Then the doctor said they could do the ENG test that I was originally scheduled for now, so he could see it.  Well, I had just taken meds to help me, since I was really sick after the test he performed.  I told him, that and how it said I wasn’t supposed to take any meds for like that for 48 hours before the test, and I’d already taken it twice that day.  He agreed the test might not be accurate under those circumstances. Oops, kinda wish I hadn’t taken my meds, but then again, I really don’t want to be so far from home when I have that test done.  I just know I’m going to be sick.

The ENG will show how much vestibular function I have left in each ear.  That’s pretty important right now…..because here’s what he thinks and the plan……

He said, it is obvious I have damaged vestibular function, it is just a question of how much, and how much in each ear.  He said he believes that, yes I have Meniere’s Disease, and Vestibular Migraines, and he said I have balance issues caused from getting my Cochlear Implants.  I noticed before, my vertigo got worse after getting my CI’s, but no one ever said that they could have caused some of it.

He said we have to treat these in different ways.  One is to get my migraines under control.  He likes that I’m seeing a Neurologist that specializes in headaches, so I’ll continue to see her and try to get the migraines more under control.  If we can’t do this, I may be taking another trip to John Hopkins to the Headache Clinic for evaluation.  The next thing he said was, I need to have vestibular rehabilitation to train my body and brain to balance without my ears.  He also said,  we need to kill my balance system in my ears.  We plan on doing this with gentamicin shots in both ears.  How much I need to have depends on the results of the test, one ear may already be dead, who knows…we just don’t know how damaged they are yet.

I will be seeing a new otolaryngolgist here in Charlotte on Wednesday, the 16th, and we will discuss all of this, and set up getting the test that the doctor at John Hopkins wants.  They will confer with each other on a treatment plan.  I guess, It will also be good getting a 3rd opinion.  The one from my doctor at Duke, the one from John Hopkins, and now let’s see what this doctor thinks.  This doctor knows I have been to John Hopkins and they will be conferring with each other.

There are a few questions I forgot to ask.  I know many of you are thinking….”You should have written them down.”  I did, really, I did.  But I wrote it on the paperwork they gave me, and I gave it to them…I didn’t have it after that….duh.  So I’m going to ask the new doctor.  It’s only a couple of things.  Nothing that would really change the plan I think.  I just want to know if they think my Meniere’s could be autoimmune, since it reacts so well when I am on steroids; and I’d like to know if they can answer why when I breathe in through my mouth, or drink anything cold or hot I feel it in my right ear.  That’s just weird.

I know I forgot to ask him these things because he was telling me things that had been thinking for a long time.  I actually asked for this treatment from my doctor.  But he wouldn’t do it.  He said it was too destructive and I could be so disabled I wouldn’t be able to do anything….ect.  The doctor at John Hopkins looked at me and said, “more disabled than you are now?”  He then asked if I had been given vestibular rehabilitation, and we told him no, that I asked for it, but my doctor had said that things fluctuated so much he didn’t think it would help.  He frowned, and said, he thought I could benefit a lot from vestibular rehab….so as I said before, we plan to do that first.   I went into the appointment with no expectations.  Actually, I expected them to tell me there was nothing they could do.  I had no real hope.  I told the doctor this, he said….No, don’t give up hope.  I explained, if I came in there thinking he was going to fix me and then he couldn’t do anything I would have fallen apart, if I came in there with no expectations, I would be thrilled if he could do anything.  He liked that.  We talked a bit more, and he insured me he would consult with my doctor here and answer any questions, and if I came back up there he would be happy to see me.  Then when I left he shook my hand and told me that it was a true honor to meet me.  That shocked me.  I told him it was so very good to meet him and thanked him profusely.  and went on my way.

A little about the trip itself…….The trip up to John Hopkins was pretty uneventful.  We stopped by Duke to pick up films that I’ve had done….you know, MRI’s, and such.   When we went through Washington, I saw the White House, the Jefferson Memorial and the National Monument in the distance.  I’ve been to Washington before and have seen those things up close, but it is still kind of magical to me.  I don’t know why.  Driving into Baltimore, it seemed so BIG.  The GPS told us to go straight when we should have gone to the right to get to our hotel and we ended up in a very sad part of town.  The buildings were mostly boarded up, yet there were a few businesses here and there.  I can’t imagine how they would ever do any business.  One place we passed there were a lot of nice cars parked on the road, and one burnt out car right in the middle of them.  Soon we made it back to our hotel.  It was just a very sad detour.

On Wednesday night…well I guess it was Thursday morning…Stuart shook me awake at 5am.  I thought, we don’t have to be anywhere, why is he waking me up.  I read his lips… FIRE!  I was awake then!!  He pointed to the alarm.  The Fire Alarm was going off.  I jumped up and put on enough to get out of the hotel…it was very hard for me to go down 3 flights of stairs!!  We were all out on the street and almost immediately there were 2 fire trucks on the scene.  No fire.  I never found out what happened.  I could not climb back up those stairs, and it took a while for them to turn the elevator back on so we had a bit of a wait.  That was fine with me.  I was very impressed that the fire department got there so fast.  The scariest part for me, if Stuart had not been in the room I never would have known there was a fire alarm going off.  I would have slept right through it.

Well, we had an adventure!  I told Stuart when we got back to the room, that with all this stress, I still hadn’t had a vertigo attack…that was amazing….so, we were moving to Baltimore.  But I spoke too soon.  Of course, I woke up with one the next day….and it lasted all day….but I spoke about that earlier in this post.

I was a bit disappointed that we didn’t get to do anything while we were there.  The one day I felt good, we wasted because 2 of my shirts didn’t get packed so I didn’t have enough clothes.  Curses.  The next day if I had felt well, we were going to do something.  We planned to go to the Aquarium, it wasn’t far from where we were staying.  However, of all the sites in Baltimore that there are to see…..after all it is home to one of my favorite poets, Edgar Allen Poe…I really wanted to see Charm City Cakes.  Yes, I wanted to go see a Bakery!  I didn’t even care if I went inside, I just wanted to see the building.  It is the bakery from the show Ace of Cakes….that isn’t on any more.

Duff Goldman

Duff Goldman – photo courtesy of Food Network

Duff Goldman started it..still owns it, has a second one in LA now.  He is often on the Food Network.  They do spectacular work, and I was just a huge fan of that show, and I just love Duff.  I could just eat him up.  I love the story behind his life, and I love his personality.   I regret that we didn’t at least drive by Charm City Cakes.  Yes, I am a goof.  I was sick, had a migraine, couldn’t focus worth a toot, had about 8 hours on the road ahead of me…and I regret that I didn’t stop by and see a bakery.  But hey, what is life without the little things?

 

 

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16 thoughts on “My Visit to John Hopkins

  1. HI I some similar issues, I do have vertigo & Menieres which I do think it is related to autoimmune. I had issues since I was 3-4 with my ears and now partially deaf, please let us know if you remember if the new DR agrees with you. Thanks feel better.

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    • Patrica, I’ll let you know if the new doc thinks it might be autoimmune. I’m not sure what to think really, I’ve had a few doctors think I have autoimmune issues, but I don’t test positive for them. My migraine doc says she believes we just don’t have the test for it yet, that doesn’t mean I don’t have something. And I know a number of people who have autoimmune diseases and tested negative for them…so, who knows. Not that I want one.
      I will post an update after I see the new doctor and we have more of a plan.
      If you want to talk more, you can contact me if you want…just click on the About tab at the top of the page, and there’s a contact firm there. I’ll email you back, asap.

      Liked by 1 person

  2. Hi! I am sure you’ve explored all options. Can I ask what came from any 3d X-rays you’ve done of your jaw?
    Have you had any X-rays done around your cervical curve specifically where your C1-2 are positioned?
    I’m currently doing tmj treatment. Found out my jaw is compressed against my inner ear. Slow progress but better then no progress.
    I’ve also started NUCCA chiro and my body alignment is out of whack.

    Anyway just wanting to share and hear your experiences with this.
    Be well!

    Sent from my iPhone

    >

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    • jarafeinblat, I have had atlas cervical adjustments. And I may have them again, for my migraines, but unfortunately it won’t help with my vestibular system’s damage. If there wasn’t so much damage there it might help the vertigo, I know people who have had luck with it. I’ve had my TMJ checked out by a few doctors and dentists and everyone says I have no problem there. Kind of wish I did, if it would help. 😊

      I’m glad you are finding relief. I do believe Atlas adjustments can be very beneficial, of course you have to find a specialized chiropractor for that. I had them years ago when I was having a lot if brain fog and couldn’t even finish reading a book, after a couple of sessions I became a voracious reader again. Another thing I liked about it was that it was not recommended that you keep having it done over and over. The doctor did it a few times, it stayed in place, I came back every few months and it was in place he never tried to get me to sign up for a maintenance plan.
      I have to look into if I can go and have this done now or not, as I have degenerative disc disease in my neck. Lower vertebrae, but it could be worrisome. And I have trouble with cerebrospinal fluid pressure.
      But as gentle as this treatment is, I would think I could do it.

      Good luck!
      And thank you for caring enough to share. I didn’t mind.

      Like

  3. First things first: the folks who make The Sonic Boom Alarm make one with a module that somehow “hears” doorbells, alarms etc. FOR you and alerts you in other ways. (Amazon sells some of them now, btw – and they are sold on many a website – 2 links at end of post). The technology was designed for the deaf (and REALLY sound sleepers – lol). I have TWO versions (that don’t always awaken me, even so).

    The most expensive one I have has a vibrating “shaker” that goes under the mattress, a LOUD, variable pitch, rate and volume setting audible alarm – which you will probably just turn off to keep from awakening the neighbors! It also has a plug-in for a bedside lamp that blinks on and off (when it works – they don’t seem to last very long, especially since they are not cheap alarm clocks, and features fail a little at a time – so you do have to test it periodically – or have someone like your hubby to keep an ear on it for you).

    BUT, I keep buying them every few years because they are my ONLY hope – and will need to buy another soon (my cheap one runs faster every day, and I’m tired of having to reset the time and the other no longer blinks the lamp – which helps me as much as the shaker.)

    If the blinking sets off vertigo, you can unplug the lamp (or buy one of several without that feature).
    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
    I hope this isn’t a long comment simply to tell you about something you’ve already tried and rejected, but just in case you haven’t . . .

    -LINKS- to a bit more info for you and your readers who don’t already know (and I hope you know I don’t make a penny from these recommendations!):

    ONE description page with features:

    http://www.sonicalert.com/Sonic-Bomb-with-Super-Shaker-TM-p/sbb500ss.htm

    VIDEO — http://www.youtube.com/watch?v=P15nWS43rD8

    I’ll need to come back to comment on your article – Tink needs a walk NOW!
    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!”

    Like

    • Thank you very much Madelyn I know you don’t make any money off of this stuff lol.
      I have heard of such but have never known anyone who used the and as you say, they can get expensive.
      I’d love to have one that would also wake me up when there’s a knock at the door, I have missed much that way.
      Will check out your liks.
      Look or ward to your other thoughts….must listen to Tink.

      Liked by 1 person

      • We’re back – he got a long [cold] walk because I felt guilty about making him wait as long as he did – lol. This was a “sniffer” walk, too – not a training walk. Happy little dog!

        Re: Sonic Boom alarms — I think you have to install a bluetooth – like doorbell (and put up a door sign that says PLEASE RING, don’t knock) – but they used to have a version that did that as well. Gotta’ take a call soon, so I still don’t have time to set down my thoughts. I’ll be back again.
        xx,
        mgh

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  4. I am glad to “hear” how it went at Johns Hopkins. I’ve missed a bunch – trying to play catch up as I can – so forgive any oopses in this comment (proofing hastily).

    It seems, from your description, that Hopkins’ great reputation is well-deserved. It seems that you were treated respectfully, with great caring as well knowledge – and isn’t it a shame that we can’t say that about ALL doctors? (But wait – the soft-spoken NURSE didn’t seem to understand the implications of your multiple dx picture and why you were there? HELLO – deaf means hearing i missing – double check for understanding and information intake!) Though it does sound like the doc made up for it.

    I wish your other doctor had followed your lead when you requested certain treatments – and it sounds to me like the Hopkins MD wasn’t exactly thrilled about it either. By the way, I’m not surprised he said it was a true honor to meet you I wish you could see yourself through MY eyes.

    You are the rare patient who fights for quality of life in circumstances where nobody could be faulted for an attitude of resigned acceptance. And still you manage to be so even-handed about it all, where many are simply exasperated or downright angry and difficult to deal with. You even manage to communicate with your sense of humor [relatively] intact – lol.

    Don’t feel bad about the “write it down” oops. I’ve gone to appointments with a questions and issues list, pen in hand to check things off and write down answers, and STILL came away with unasked questions. Sometimes the answers to other questions took the dialogue another way so I didn’t realize that a few things remained, and sometimes the doctor’s answers were lengthy, so time ran out.

    When I was facing major surgery (for what, thankfully, turned out to be benign, but could have been MUCH worse!), I even had a great [bossy] friend there with a copy of my list of questions and her own pen for checkmarks — and I STILL had to call back after we’d left the office to get a few things clear. We can only do what we can do – nobody’s perfectly in control of our situations.

    FIRE alarms at 5 in the morning? Stairs? Waiting outside for the elevators to be turned back on? No information? I’d have been a public mess – and have been with less provocation. Good job, girl! In that “no accidents” sense, perhaps your sad drive when you got turned around, ending up in a part of town that was, shall we say, unfortunate, was to help your perspective a tad and take your mind off your situation for a bit. Maybe?

    Anyway, I’m sorry you didn’t get to enjoy the fun parts you were looking forward to, but the visit to Hopkins seems to have gone better than expected. Better that than the other way around, right? (not that you don’t deserve to have BOTH!)

    Moving forward, you aren’t at the crossroads where permanent decisions need to be made yet – and it seems that the Hopkins MD wants to go slow enough to explore all other options first – which I think is prudent, in your case or any!

    Keep putting one foot in front of the other, remaining cautiously optimistic and staying out of denial (as you ARE) and you WILL come out the other side better than you went in. It will feel better and things will seem a little less daunting once all your options become clearer, no doubt.

    My prayer for you is that 2016 turns out to be YOUR year! Even small improvements will be a win – and I’m praying for miracles for you.

    xx,
    mgh

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    • Madelyn, you are a dear. The fire alarm was an adventure! We did get to wait in the lobby for the elevator to come back on. Thank goodness. Funny thing. I got all bundled up, convinced it would be freezing…ummm Baltimore in December…but it was not cold, I was HOT…but under my sweater and coat I just had on a little skimpy tank top….no bra. With all those really hot firemen running around, is it a rule that you have to be good looking to be a fireman? Even the older guy was hot. LOL. so I’m sitting there holding my coat close to my chest drinking ice water. Hahaha. Yes, an adventure to be sure. xoxo

      Liked by 1 person

      • Well, you DO have to be in pretty good shape to be a fireman, which is certainly attractive — but I know what you mean. They all seem to have great faces too!

        Funny fireman story: When I was in my very early 30s and still pretty great looking (with make up and hair, anyway), I was laid up in a small town hospital with a BADLY broken leg, near a small skiing destination in upstate NY. (yep! skiing accident – spiral fracture with 7 breaks – still on pain meds, leg in a hip cast, hoisted up for circulation.) I was on either the 2nd or 3rd floor of this quite small village hospital, so imagine my surprise when what should I see out of my window but FIREMEN!

        I wasn’t even sure if I was dreaming it – but nope. They were firemen all right – on ladders – carrying a lot of equipment and staring into MY window – young and CUTE! (Many times since, I wish I’d had a camera).

        I looked – well, you can imagine how I looked (not good!)

        It seems that this hospital was used as a firemen-training venue for ladder skills – and that this happened frequently.

        Sure would have been nice to have known this before I worried about how they planned to get me out of there on those ladders.

        So I can relate!
        xx,
        mgh

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          • Yeah, I have more than a few funny stories as a result of almost a YEAR in a hip cast following that event (and having to relearn walking without a limp).

            One time my [female] friend was pushing my wheelchair in NYC (during a protracted transit strike) and we had to cross the street. After circling the block in the street, weaving in and out of parked cars to dodge traffic, we discovered there was nowhere to get that darned chair over the curb – no breaks or dips at all – and my friend almost dumped me out of the chair trying to navigate the curb (my crutches were at home, so I was worthless!).

            Ultimately, my friend pushed me back home to scout out routes solo — and THEN we discovered that the elevator had broken! My leg was set long to make sure it healed right with all those breaks, so there was no way I could have navigated those stairs safely, even if she had brought down my crutches.

            I was dating a big bruiser of a guy, who had to take off work to come and sling me over his shoulder for the 5 flight walk-up & then go back for the chair (which my friend was guarding – NYC, you know). THIS was before cell phones, too – so getting ahold of him is its own funny story. (I’ll spare you)

            Piggybacking on my “all anger lately” comment – on another post, perhaps? – I want to add that we ALL found it hilarious at the time. Lots of laughter.

            Given the events of the past few years & my situation today, I’m not so sure how I would react if it happened now, but reliving this memory is a good reminder that ALL is perspective.
            xx,
            mgh

            Like

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