4 days post GK and tinitus

[Walter M]

Hi Walter,  I'm just wondering how you are doing.  How's the tinnitus and the rest of your recovery going?  as I write this I can hear my ear humming to me...as usual.  I will be honest with you once more, I really have gotten so used to it that I almost don't notice it msot of the time.  But one thing is for sure, weather changes, loud places and stress do effect its' volume.  Keep in touch.  Also, do get the musician's earpiece, it helps.

Hi nikynu,

Well now I'm almost 5 weeks post op. The tinitus is getting milder I think. During the day I really don't notice it at all. Only when going to bed I hear it, but does not disturb me at all.

I also, put myself on a very low dose of steriods (2mg a day), just to reduce the presure in my ear and the tinitus. So far the effects seem to be good. My ENT was not really willing to prescribe me those drugs, but he admitted not knowing too much about ANs. My neurosurgeon was clear that he did not want me to call him unless there was something urgent. Luckely my GP is willing to prescribe the drugs to me, but also has no clue about the dosage.

Currently I'm staying in Canada (going back tomorrow) with a family with a medical professor. He is treating cancer and told me that these kind of dosages are not really harmfull, even in the long run. I'm taking my chances to make this work out in the best possible way.

As for the fatique.. I'm getting in better shape each week. I still need my afternoon nap for an hour, but after that I'm energized again and function just like before I got the problem. All in all people are amazed how I'm doing. For the outside world walter did not change at all, and to be honest even for myself life did not change that much even though you are reminded of the deafness on a regular basis.

[ppearl214]

Walter,

Congrats to you and continued wellness.   The fatigue should ease a bit in the months to come and it sounds like you are doing marvelous! Congrats!

Phyl

[linnilue]

Hi Walter,  How is life for you these days?  I haven't been online in a couple of weeks and just saw your post.  You must be back in the Netherlands by now Heesch and Maren-Kessek and you worked for Organon, the pharmaceutical company and now he works with a company in Zevenbergen that deals in medical foods.  We, howeever live in Vermont and Florida, but my husband's company is just outside Montreal, Canada.  I thought you's be interested in this little tidbit, it takes the mind off menacing matters if you will.  How's the tinnitus?  And how's the energy.  I still tire rapidly.  I take little breaks during the day which help alot.  We are in Florida now and I can tell you that I feel so much better here than I did a year ago.  At that time I couldn't tolerate heat at all but now it seems ok so far.  The tinnitus is brutal today, alot of work getting ready for company and Easter so this is typical.  I hope your recovery keeps going smoothly for you.  Happy Easter or Passover...Holly

[Walter M]

Hi nikynu,

Interesting to see the international connections. The tinitus is fluctuating. I'm trying to find out whether there is a connection with the steriods I'm taking. So far it seems, that if I'm not taking it, it tends to be louder. Today, easter, we went outside with the kids. The tinitus was hearable in the open air, but only noticible when you pay attention to it.

Well the fatique. During the week, I typically take a rest at noon for an hours or so. Just hump into bed and dooze. Just after dinner, I ussually lay on the cauch for about half and hour. For the rest I'm doing fine. I'm planning to do some workout as gaining weight is getting a bit of problem and my condition used to be better as I found out today playing a little footbal with my son and running uphills. But I still feel things have improved over the last few weeks.

All in all, I'm just anxious to see how this going to work in the long run. Complications after radiation, if any, ussually show up 6 - 18 months post-op, and I honestly can't wait to be past that period and there is evidence of tumor control. That would really make my day... I guess I'd just have to wait another 18 months...