posted
For all of you who've had hearing loss, tinnitus, pain, pressure in your ears, hyperacusis, please don't give up!
After 5 years, ever since a deer tick bite on my ear, I've gone from ENT to ENT, even to vaunted halls of Medicine, only to be blown off time and time again. My LLMD has been furious.
I finally got a recommendation of an ENT who was at least Lyme-friendly. What a great doc!!! Took all my concerns seriously, spent more than an hour with me, redid hearing test and tympanogram, and said, "We're going to have to get rid of that fluid in your ear. It's been there for years. How do you feel about surgery to install an ear tube?" Pretty nearly fell off my chair. Then the doc said, "We'll work on this."
Imagine after 5 years of hell having a doctor say, 'You're not crazy. These are real problems we can try to solve. They sound like they're most likely from the Lyme.'
Surgery Tuesday. Will let you know what happens!
Posts: 422 | From Luck home | Registered: Sep 2005
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posted
I am so excited for you. You have to let us know if it works.
I have horrible ear issues. Especially my right ear. Feels like the fluid is not draining properly. It really acts up with temperature changes.
Good luck.
Posts: 175 | From Pa | Registered: Aug 2006
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Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
Please let us know how it goes.
Like you, I've gone from ENT to ENT because my ears feel like I'm in an airplane all the time - especially every time I swallow.
This was before my Lyme diagnosis, but presume it's a Lyme issue. I still can't get anyone to address it except to say "Take Sudafed."
Good luck! Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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posted
My ear issues aren't all Lyme-related, but I sure can relate to the relief you feel. I've had tubes inserted about 5 times over the last 20 years. If they'd been made available when I was a child in the 50's and kept getting constant ear infections, I'd probably have good looking teeth instead of discoloration from tetracycline. Anyway the first tubes were put in on an emergency basis -- the fluid just shot out onto the doctor's coat!! They lasted about a year, then I had "permanent" ones with flanges but they only lasted 6 months! After that I had the regular ones put in again. My ENT shoots them right in there in the office without anesthetic because I had a bad allergic reaction to the drops they put in to numb it -- my eardrum started to peel. Anyway it only hurts for a second, and my eardrums are so scarred anyway. I have a little hearing loss in one ear from all the infections. As I understand it, test pilots were given these ear tubes in the 40's but it took 40 more years to make them available as a treatment for the rest of us.
Posts: 459 | From Connecticut - just across the river from the Lymes (Old Lyme, Hadlyme, East Lyme, South Lyme & Lyme) | Registered: Oct 2000
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posted
They help. Obviously if there is a fluid build-up the tubes give that an opportunity to drain. I've had fluid that just stuffs my ears up, makes me deaf and "swishes" and I've also had fluid that causes GREAT pain (as in my first emergency tube procedure). I have small, scarred eustachian tubes and no end of ENT troubles!
The other thing is the tubes kind of equalize pressure in the ears and stop popping and dizziness and fullness and sometimes the ringing, etc. -- actually, knock on wood, I have no tubes in right now but I've been okay for a couple of years.
They generally do reject by themselves, by the way, sometimes due to an airplane flight. You might find them, you might not. If they're caught in the ear canal your ENT might irrigate them out.
When I first had them done I had to stuff lambs' wool in my ears just to take a shower. Now they use a wax earplug and they let you go underwater!
By the way, I wouldn't advise the average Joe to have them with no anesthetic, either general or local, like I do!
You might find that your ears ring and feel stopped up temporarily after the procedure.
Posts: 459 | From Connecticut - just across the river from the Lymes (Old Lyme, Hadlyme, East Lyme, South Lyme & Lyme) | Registered: Oct 2000
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posted
My ears pop too. Started when the lyme went wild two years ago. TMJ too, it all seems related...inflamation in the area. Ibuprophen helps it.
My llmd asked how my sinus' are and I said fine...no problems. CT scan revealed blockages way down deep and lots of thickening.
ENT who did the surgery suggests the ear popping may stop completely as the sinus' heal. Too soon to tell for sure but it hasn't been as bad.
Also says tonsils inflamation may also be impacting the eustacian tube. Once my tonsils go, Thursday, my ear popping days may be through.
Who knows...they were right about the blockages that I would have never susected. Perhaps the PCR will show lyme in sinus? Wouldn't that be something for someone sero-negative and called crazy by the mainstreamers.
Mike
Posts: 87 | From Yorktown VA USA | Registered: Jul 2005
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Well, I wish I could say things went well but they didn't. The ear tube insertion procedure was done in the doctor's office. The actual procedure wasn't too painful with a small local in the ear but the sounds were incredible for someone with hyperacusis--me. The suction machine sent my body into spasms of anxiety but the suctioning noise didn't last long.
The ENT said there was no fluid in the ear!?? but that the ear drum had been retracted, the equivalent of being underwater for 5 years. Warned me to sit up slowly. I did. And that was the end of feeling ok because the world and I started moving in opposing directions. I felt like I'd just downed 2 quarts of Jack Daniels and had gotten off a fast merry-go-round that I'd been on forever. I could barely move. Three people had to assist me into an exam room. I could just shuffle my feet, clutching the hall walls along the way.
Within minures, I could no longer move my feet. The verigo was so intense I was paralyzed. I would not move my head or a finger unless I had to puke.
With the retching in a public commercial tiled bathroom the intense sounds of the door closing and the toilet next to me flushing my hyperacusis kicked in and the sounds began to make me retch too. (There was no other bathroom to use!)
They tried to give me valium and compazine but I threw both up.
After two hours the doctor said you can go to the hospital where I will admit you or you can go to the ER. You must have an IV inserted because you will not get better without meds.
Riding in wheelchairs and the elevator and the car were death-defying feats for me. Eventually I did get to an ER, IV meds were given, and after a forty minute drip of saline they "test drove" me to see if I could be released. Some drugs work so fast and so well! Now if we could just shake Lyme the same way!
Anyway, the ear feels less pressure and some pain but not bad. Lack of hearing the same and tinnitus unchanged. Really, really exhausted and irritable today. I'll go back in two weeks for a recheck and will add to this post, hoping for progress.
Marina Posts: 422 | From Luck home | Registered: Sep 2005
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I am so sorry. I was really hoping this was going to be a cake walk.
I will send healing prayers your way. Hopefully in a couple of days things will be better.
Is the vertigo gone?
Why was your ear retracted.
Please keep us posted.
Posts: 175 | From Pa | Registered: Aug 2006
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Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
Marina,
I, too, am so very sorry you are enduring this on top of everything else.
I was so hopeful by your earlier description that this would help you. I was also excited that this might be something that could help me. But I already deal with so much dizziness and balance issues, now I'm frightened about pursuing it.
When you are feeling better, please post and let us know how you are.
Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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posted
The dizziness and vertigo did get a lot better by the next day, Wednesday. NOW WHAT!? Saw my doc Friday and he wanted me on abx--amoxicillin (sp?) for the week between my Mepron runs which is right now. So I started with 500mg on Friday night. Saturday, VERY dizzy again! Can't be anything but the abx so took only 2x500. Today the same and mega-dizzy. Get crazy even looking at this computer screen from side to side! What's happening? Got to be abx working on Bb, don't you think? But where? In what part of the ear? Help!!
Thanks for the bouquet! Think I need a liferaft now!
Posts: 422 | From Luck home | Registered: Sep 2005
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posted
Forgot to add the ENT said retracted eardrums can be the result of viral infections. Not much of a scientific leap to imagine bacterial infections capable of same. Posts: 422 | From Luck home | Registered: Sep 2005
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
Will the retracted eardrum "right itself"? Did the ENT do / prescribe anything?
I'm really sorry about your horrible experience; we are all so sensitive...
With great wishes for good health and a speedy recovery from all this,
canbravelyme.
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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I am sorry to hear it's been slow going. Does drinking hot tea help. I don't know why but when my ears are acting up Tetley tea sometimes does the trick.
I don't know if it's the caffine or what. I have tried other brands, but Tetley seems to work best.
Please keep us posted. Sending healing prayers your way.
Do you have someone that can help you through this?
Posts: 175 | From Pa | Registered: Aug 2006
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posted
Thanks all of you. Might try some Tetley tea. Yes, I hope the Amoxy is working. Seem a little less desperately dizzy today. Forced myself to go for a walk. Smelled like spring outside!
I go back for a recheck on March 9th so will add to this post to let you know the prognosis.
I think when the tube went in the ear the pressure was relieved so, yes, the retracted eardrum must right itself.
Please read my new post: Wishing you a Lyme-Friend like mine!
Posts: 422 | From Luck home | Registered: Sep 2005
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geniveve
Unregistered
posted
just wanted to say i hope you get better and things settle down for ya.
i would have been so freaked out, they would have to have admitted me to the psych ward....
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