Just Diagnosed

[Sangye]

Jolanta, you're right to think hard about getting tubes. What they don't tell you (only in a quick murmur or in the tiny print) is that every time they cut the eardrum to put tubes in, it leaves a scar. Scar tissue on the eardrum creates more hearing loss. It's a toss-up and must be decided individually-- is the hearing loss from the ear congestion much greater than the scar tissue damage?

Also, the tubes don't stay in forever, and often fall out quite quickly.

[Doug]

There is just no way that I can not sample the duck with apples, or the cranberry turkey or the cheese blintzes, or pierogi, or, cabbage rolls, or beef rolls..... Now you see my dilema.

Mmmmm! I knew there was a reason I loved the Polish! Pierogis in particular bring back fond memories of New York City and the East Village!

I had the ringing in the ears and some momentary balance issues, but that went away until I was assassinated by shingles in October-November 2007. Oh, yeah. I was smug about achieving remission, and I let my guard down to overwork and stress, a great way to invite weakening of your immune system. BFF works that way sometimes: even when you start to feeling better, don't forget that you are not Super Guy, that infections you catch tend to take on bigger than life proportions. "This is the worst case of herpes zoster I've seen in my career," said my doctor, who's been in practice at least 30 years. Shingles left me scarred and completely deaf in the right ear. I lucked out, barely, that it struck up to within a quarter inch of my right eye, not a place you want shingles to go.

[pberggren1]

I thought pierogies were Ukranian?

[Jenny]

I was just diagnosed 4/2/09. Hearing impaired, balance horrible, chem starts Monday. Just want to know if full hearing and balance are ever restored? Hearing ability changes daily to some extent. Both inner ears do not function apparently.

I want balance enough to work, walk my dog, travel, maybe a little golf and skiing. Is that possible for many?

Hi Shannon. So sorry to hear about your balance and hearing impairment from the WG. You said that your hearing ability changes daily to some extent that sounds hopeful that you don't have permanent hearing loss. With my experience I had a fullness feeling in my right ear and muffled hearing (granuloma was growing in there) and then two weeks later total hearing loss in that ear. Then all hell broke loose (ottitis media) it lasted for about eight months (I still have ear and mastoid bone pain) my eardrum was getting pulled towards the eustacian tube and I had all this fluid, and white jelly stuff and blood etc coming out of my ear for a long time (the ENT I was seeing at the time was a jerk he just kept giving me antibiotics and prednisone here and there for like a couple of weeks at a time and saying it was an ear infection for four months). Have you seen an ENT specialist ( I went to a new one in July)? I had two ear surgeries to clean it out (it was called a mastoidectomy it relieved a lot of the pressure and horrible pain) and a tube put in.

With me it destroyed the auditory nerve and affected the labrinyth (balance) I got really dizzy there for a while but my balance isn't too bad. If I look up or from side to side with my head I get off balance or if I'm really tired. I can exercise (go on a treadmill etc) and it isn't too bad so don't give up on that. Anyone that has had facial palsy or constant ringing in the ears don't give up. Doctors didn't know how to help me with that and I heard about an Osteopath and went to him and the first treatment I could move my cheek on the right side and now I can smile (not exactly like I used to but it is better than nothing) and close my eye again. Still can't raise my eyebrow but it is better than being paralyzed on the right side of my face like before (I was so self concious about it, you try to smile and people look at you like you are weird). I see him every three weeks. I first saw him at the end of October' 08.

Best of luck to you.

Jenny

[Doug]

I thought pierogies were Ukranian?

The restaurant where I ate them was run by Russians. Of course, in 1970, Ukraine was The Ukraine and a part of the USSR. Given the tragic history of Poland and the constant changing of its borders and those in charge, pierogis could be Polish/Unkrainian/Russian. I think they are delicious no matter what!

[germaine]

Hi Shannon, I had three rounds of IV Chemo and after a flare (during treatment) I was started on oral chemo (procytox). It has been much more successful I think, plus no nausea or discomfort for me. I took Sange's advice about being sure to rest and not overdo things. I have been feeling good and right now don't have much for symptoms. I am being withdrawn from the pred. Down to 20mg now and the doctor will follow that with a reduction in dose of chemo, or change to maybe cellcept? Hope this plan works. I think the pills work best as they are constant and the IV seemed to work in cycles and gave the WG a chance to get out of the box during the low periods. I wonder what other people have experienced?

[Jack]

Soon after I was diagnosed and had settled down a bit with medication levels I was switched to "pulse" treatment. The idea I believe was that it would give less side effects. However, I suffered repeat flare ups of Wegener's until I returned to daily medication.

[Doug]

My doctor's orders after they stabilized my condition and sent me home from University Hospital-Denver in January 2004 turned up. They put me on one each daily, or as noted, of the following: Prevacid (30mg); Toprol XL (50mg); Levofloxacin (250mg); Procrit (10,000 units, weekly, subcutaneous injection); Bactrim DS (one tablet Mon., Wed., Fri.); Cytoxan (250mg daily, which came in 5 50mg tablets). Prednisone, leaving the hospital (where they had me on 80mg a day for the month of January 2004): 70mg from 2-1 to 2-14; 60mg from 2-15 to 2-29; 50mg from 3-1 to 3-14;40mg from 3-15 to 3-29; 35mg from 3-30 to 4-13; 30mg from 4-14 to 4-28; 25mg from 4-29 to 5-13; 20mg from 5-14 to 5-28; 17.5mg from m5-29 to 6-11; 15mg from 6-12 to 6-26; 12.5mg from 6-27 to 7-10; 10mg from 7-11 to 7-25; 9mg from 7-26 to 8-31; from 9-1-04 through 4-30-05, my Prednisone dosage dropped 1mg per month until 5-1-05 I was celebrating my first day without it! My doctor dropped me to 200mg/day of Cytoxan at one point in March 2004 because my red blood cell count was very low. Another time (April 2004), he had me stop Cytoxan for Friday through the next Monday for the same reason. There were, of course, follow-up appointments to verify I was headed in the right direction. I note these things so you can check your treatment against mine and to correct anything I may have posted incorrectly in past when I was working from memory.

[Jack]

Since we are talking about the effects of treatment -

I woke up today feeling bad as usual, but that is OK because I know I will improve after an hour or two. However, I just got worse instead.
Then, when I went to take my evening medication a while ago I realised the reason why. I'd forgotten to take my morning pills! Damn!
That is about the third time I've done it with the same result.
Does anyone else have this immediate reaction to missed medication?

[Luce]

I too have twice now forgotten to take my morning pills. Both times I have managed to get to work and sitting at my desk I have started to wonder why I felt so good and what was missing - the usual sicky indigestion feeling I get for an hour or so after taking my meds.
I am lucky that I only live a 5 min drive or 15 min walk from work and an understanding boss, so both times I've popped home and had my missed pills by 10.30am.
I don't think that 3 hours late counts as missed pills and it's not really long enough to notice any ill effects from not taking them at the normal time.

Trouble I have now is everyday I get to my desk and have a debate with myself as I try to remember taking my pills that morning. When it becomes routine I guess one day rolls into the next and you become complacent. I have just ordered myself a 7 day, twice daily pill organiser to try and stop myself from debating all morning. The last thing I'd want to do is convince myself I didn't take them and take a double dose, the pill box should stop that.

Jack I find it funny that I was alerted to not having taken my pills by feeling well, rather than feeling the ill effects like yourself.