Author Topic: MENIERE'S DISEASE  (Read 2317 times)

BB

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MENIERE'S DISEASE
« on: May 17, 2007, 07:32:09 pm »
I HAD SUREGERY 6-15 2006 FOR MY AN.  I WENT IN TODAY TO MY FAMILIY DR. FOR SINUS PROBLEMS AND EAR PAIN TO DAY.  MY FAMILY DOCTOR IS THE ONE WHO SENT ME FOR MY MRI BACK IN JUNE OF 2006 AND THAT IS WHEN THEY FOUND THE AN.  AFTER TALKING WITH HER TODAY AT LENGTH,  MENIERE'S DISEASE CAME UP.  SHE THINKS IT IS POSSIBLE I MIGHT HAVE THAT.  HAS ANYONE HAD THIS? COULD MY AN SURGERY CAUSE THIS, OR COULD THE MENIERE'S DISEASE (IF I HAVE IT) HAVE BEEN CAUSING THE  PROBLEMS AND THEY JUST HAPPENED TO FIND THE AN. WOULD MY AN MRI SHOW MNIERE'S?  I'M REALLY CONFUSED RIGHT NOW.  I LEFT THERE NEEDING MORE ANSWER'S, BUT YOU KNOW HOW IT IS IN THE DOCTOR'S OFFICE.  SHE SPENT 2 HOURS WITH ME TODAY TALKING ABOUT MY PROGRESS AND MY PROBLEMS I AM STILL EXPERIENCING.  JUST WONDERED IF ANYONE COULD HELP ME.  THANKS, BB

Windsong

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Re: MENIERE'S DISEASE
« Reply #1 on: May 18, 2007, 02:10:06 pm »
BB,

I'm new to the word meniere's but here goes an attempt at explaining.... cochlear hydrops is  a frorm of meniere's... it means that fluid is seeping out through the inner ear membranes and heading for where it shouldn't be... it causes the meniere's symptoms but without the big time vertigo i think it was, hence they say cochlear hydrops is atypical meniere's....in my case my specialist said that my mri did show the fluid in the inner ear opposite to my An... i have learned a little bit about all this and have talked to my An oncologist about it and my neurotologist... (you also will find some info on the okiesandy thread under hearing about all this in the comments re AIED)...  it can happen after surgery for an An and is possible after radiation treatment for An in the opposite ear due to a sympathetic type of response but is very rare...( Sandy gave some info on all that re brackmann who reports on that).. it's thought to be an autoimmune response....there are a couple of bllod tests but they aren't 100% accurate.. steroids are the treatment...there is a  japanese study about his too but I don't know where to find that one sorry...not too many docs have come across any of this as it is very rare...

hope i got this right and that that helps....

Is your possible meniere's in the An ear or the "good" one?

BB

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Re: MENIERE'S DISEASE
« Reply #2 on: May 18, 2007, 04:37:21 pm »
THANKS SO MUCH FOR YOUR RESPONCE.  I HAVEN'T BEEN OFFICIALLY DIAGNOISED WITH MENIERE'S, BUT THE DOCTOR DID GIVE ME A PERSCRIPTION THAT IS A WATER PILL, JUST TO SEE IF IT MAKES A DIFFERENCE.  I'M DUE FOR MY MRI IN JUNE.  IT WILL BE THE FIRST SINCE SURGERY IN JUNE OF 2006.  THAT IS WHEN I WILL HAVE MORE QUESTIONS ANSWERED I HOPE BY THE DOCTOR WHO DID THE SURGERY.  I CAN'T SAY WHICH EAR, BECAUSE I HAVE BEEN HAVING VERY DEEP PAINS INSIDE MY EAR ON THE OPPOSITE SIDE OF MY AN.  COULD JUST BE ALLERGIES, BUT NOW I WONDER IF THE MRI WOULD HAVE PICKED UP BEFORE SURGERY THE MENIERE'S, AND THUS THEY FOUND THE AN.  I'M REALLY NERVIOUS OVER THE WHOLE ONE YEAR MRI DUE NEXT MONTH, BUT I'M SURE I WILL WORK THROUGH IT.  I HAVE NO HEALTH INSURANCE NOW, SO THAT IS A BIG BIG PROBLEM,  AND STRESS I HAVE TO FACE, PLUS NOW RESEARCHING THE NEW PROBLEM THAT MIGHT BE THERE.  THANK YOU SO MUCH FOR THE INFORMATION, THAT REALLY HELPS.  I WILL ALSO READ THE OTHER LINKS YOU MENTIONED.  I CAN'T REMEMBER IF YOU SAID YOU HAVE MENERE'S?  DOES IT MAKE GETTING OVER THE AN SURGERY HARDER?  IF YOU CAN'T ANSWER THIS I UNDERSTAND.  AGAIN, THANK YOU FOR THE INFO.  BB

Windsong

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Re: MENIERE'S DISEASE
« Reply #3 on: May 18, 2007, 05:50:13 pm »
BB, I can't answer re surgery questions really as I did not have surgery, I had fsr radiation treatment for my An. As to meneiere's I have been told i have c hydrops and aied. This came about after ear pains, pressure, loss of hearing in the non An ear plus all in the An one, and episodes of imbalance and increased tinnitus. I'm a year and a half out from my An treatment.  I was using a steroid drop in my ears and my hearing came back almost to its previous level of loss in the non An ear so I haven't begun the steroid pills yet. The last few days though my hearing seems worse again, so i guess i will be seeing my doc next week. Plus I had  an attack of some sort in my ear /head today with the roaring tinnitus, imbalance and pressure etc. I am still in the stage of learning more about it, talking to my doctors and making decisions etc....

I do know of a person who had An treatment (who also had a small An in the second ear as nf2)  who was thought to have AIED about a year after An treatment. Since even a small An can cause hearing loss it's an interesting/hard call as to whether its from aied or the An itself. It really is rare though.

It's hard not to be stressed as you are without ins right now, I know, but hopefully your coming mri will bring continued good news in your recovery from your An op last year. Your doctor sounds on top of things so that is good. Seems you are in good hands and your An surgeon should be able  to tell you more after your mri. I hope you have a neurotologist too who is familiar with inner ear problems. Perhaps the water pills will help you too. See if it helps. There are helpful hints on the meniere's site for that also.

all the best, good luck,
W.

BB

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Re: MENIERE'S DISEASE
« Reply #4 on: May 18, 2007, 09:03:16 pm »
THANK YOU SO MUCH WINDSONG FOR YOUR  INFORMATION ABOUT THIS.  WHAT WOULD WE DO WITHOUT THIS WEB SITE.  I WAS GOING TO PUT OFF MY MRI UNTIL JULY.  THE DOCTOR WHO DID THE SURGERY SAID THAT WOULD BE OK.  NOW I AM WONDERING IF I SHOULD HAVE IT DONE IN JUNE.  THIS SOUNDS SO VERY COMPLEX, ALMOST LIKE LEARNING ABOUT THE WHOLE BRAIN TUMOR, AND WHAT TREATMENT.  THANK YOUR FOR YOUR WORDS OF ENCOURAGEMENT.  HOPE YOU WILL GET TO FEELING BETTER ALSO.  I'LL CHECK BACK WITH YOU TO SEE HOW YOU ARE PROGRESSING.  THANKS.  BB