okiesandy

[Dealy]

Sandy- I live in rural western kansas. The doctor in KC we are going too see this coming week did my AN surgery 18 years ago and he is good as far as surgeons go. Keeps in touch with House Institute in LA alot. He is the nicesest doctor I have ever run across I remember when I had my first surgery 18 years ago he called me about a month after to see how I was doing. I was floored. This time he called himself and talked too my wife. He does not allow secretary's-office staff to convey vital info if he can do it himself. If he is able too assist me in hearing-I figure heck what do I have too lose. I already cannot hear worth a crap so if I end up losing it all (hearing that is)well at least I tried something. So I will give him a try. Thanks for your concern and e-mail. I think back so often when I had ione good hearing ear-how fortunate I was. Oh well.  Does no good to cry over spilled milk because now I am blessed with another AN and I am just gonna have too except that. Does not mean I like it-just that I have too except it. Thanks as always-Ron/

[Windsong]

Hi again,

I had my mri this morning that my neuro-ent ordered. The neat thing is that i have them at my An treatment hospital so both my fsr doc and ear doc will be looking at it. The bangs and the clunks and such from the mri seemed "muted" this time. Wasn't sure if it was due to really good earplugs and earphones plus the sponges and and the head helmet type thing (that was the first time they put that on me... it was a bit like a hockey helmet plus i had a strap across my forehead) which kept everything in place snugly or was due to the hearing loss. Oh, Sandy, you're right about the low frequency loss being connected to a form of menieres, my ent told me that too. Seemed like a longer mri this time around and i nearly did doze off for a minute. I was out "partying" last night lol so was mega fatigued with less sleep than i need. The social thing was this dinner and performances by Spanish guitarist, dancers and singer and was fabulous but oh the beat reverberating in my ears haha...(used plugs)....no wonder I couldn't fall asleep after getting home late... my "innards' never mind my ear were still dancing inside me lol....funny how I am relaxed about this test. It's almost as if I'm experiencing a 'what will be will be" attitude. Of course i have an awful lot of faith in my doctors and I am fortunate that for my An I am at a hospital that is world known for cancer treatment plus they've done enough Ans to have reinforced my own thought that I was doing the right thing when i chose the fsr. So between that hospital and my ear hospital across the street I can have both followed up on with one aprking ticket heheheheheheh....Now i just have to wait a couple days until a meeting to find out what's what. I find going out in social situations that are "noisy" really tires me out, like last night. I slept all day!

Sandy, I thoguht the same when i read about that methotextrate (sp?) when i read that on some site... as for the steroid for the ear, I am using drops directly into my ears and would be loathe to take a pill but then i have other health issues so i am dealing with more than an ear here....the drops have helped the plugged up feelings i was getting.

Sounds like you have a good doc there too Ron. Nice that he called. Makes a big difference in how we feel!

Cheers,
Windsong (who is listening to stereo tinnitus tonight haha)

[okiesandy]

I know what you mean about the noise thing. I have problems when I have to go to my husbands family functions. They all talk at once and there are a lot of them. I come back like I have been working in the sweat mines all day. Takes me days to recover.

When I hear others comment about single sided deafness I always want to tell them just how lucky they are. One really good ear is worth a lot to me. They are blessed and don't know it. SSD took a little getting used to and maybe I will adjust to deafness. I intend to go down fighting to keep the hearing I do have.

My husband and I went to a casino last winter and they had a very loud band. We were there for many hours and when we came out my tinnitus was actually playing music. I thought I had lost it and I am sure my husband did when I told him. This went on for hours. I was glad to get back to crickets and humming and hissing. My normal ear sounds. Never thought I would welcome them back.

Keep well,

Sandy

[Windsong]

I had a meeting with my radiation doctor today. The good news from my recent mri is that my An is stable, same size, and no An is evident on the good ear side. hurrah.... as for the good ear hearing loss, there could be that rare occurrence ( he mentioned a japanese study) where the good ear decides to do what the bad one has.....which could explain what is happening with my hearing.....

i still have my meeting to follow with my ear specialist...

Sandy, when i saw you mentioning that studies have shown that one drug doesn't end up working i am reminded too of some studies i read which stated that prednisone or steroids may also not work.... of course I hope that yours does the trick for you!

I really appreciate all that you have shared here in this thread. Thanks!

all the best,
W.

[Windsong]

Sandy,

How are you doing?

I've had the follow ups and am thinking about them lol.  The last month has been so crazy with the loss of my hearing, then two days ago I began hearing better again. A hearing test today which is one month from the last,  shows  a 5 dec loss in the low tones but the rest is pretty much the same, maybe a bit of a jog in frequencies on the rest of it. We talked about "sympathetic cochlear labyrinthitis" and a few other things.

I asked about the methotrexate and the study i had read and the response was that methotrexate allows less steroid to be used (even if it doesnt seem to help the hearing. My mind stalls about using a steroid for a month because of portential side effects. And however vain it sounds i don't want to gain weight. I don't feel good weighing more than i do now. Never have. Then there are the other things too. Have you found your weight went up with your 28 day doses? Any other side effects? Even water retention under normal female variances drives me bananas. Another drug mentioned was imuran. Has anyone mentioned that to you? As I wrote this my "good" ear ha ha is doing a new thing with tinnitus if that's what this is... a little drum sound and the ryhthm keeps changing. I've never had that before....yikes.... it won't stop.

My neuro oto mentioned a name in connection with part of our discussion... that was Dr. J. Harris at university of california med school. Have you heard of him? I was checking out their site. Lots to read. various pu med searches brought up many abstracts but haven't looked at them yet...

It isn't just the hearing loss in the "good" ear that bugs me, it's the other things too... like the pressure and the tin and gawd help me the "drums" tonight.. makes me envision the bones in my middle ear going nuts and the hammer banging away.. haha... some burbling going on in there too but it's supposed to be dry lol...

Please let me know of any effects the steroid has had on you (apart from keeping your hearing? ) thanks
Windsong.