Just need to vent! (GK)

[RAB]

Ok, so i had the GK procedure done on June 4. I had some bad headaches for 1 week.  I woke up the in the morning exactly 1 week after with no headache at all.  I felt better than I did before the procedure and my hearing even improved.  It always tested in the normal range but there was always a sort of distortion to it and clogged feel.  Now that was nearly gone and almost normal feeling.  I had 1 great month!
On July 7, I went for my follow up visit and was telling everyone how great I felt.  Could you believe that the very next day, I started to notice a "change" in my hearing!  I tried to ignore it as I have had fluctuations before.  The next day I woke up completely deaf in that ear with the loudest obnoxious changing tone tinnitus that I have ever had! Very disturbing!
 I'm on steroids now--Great!!  Dr. wants me on them for 2-3 weeks.  It has been one week now.  I've been jittery and hyper.  I need to burn some energy! I buzz around all day and cannot sleep very well.  Also, I feel like I'm having hot flashes.  Every day I pick up the telephone several times a day to test my hearing to see if the dial tone is getting any louder or if I can hear my voice mail.  I swear I think I'm going crazy!  Anyway, I think there is some improvement finally.  It was so subtle every day, but after a week, I do hear an improvement.  I go for another hearing test on Tuesday.  I hope it shows improvement because I really want to be off these steroids!

For anyone who has been on steroids,   How long does it take before you start gaining weight?  How long does it take to get the "moon" face?  I have been so worried about this that I cannot think about anything else.
Sorry for the rambling!

[nanramone]

wow - hi.
I had the same thing happen after GK, but it happened the day after I had treatment, which is rare. The headache pain was tremendous, I fell over and lost all hearing in the AN ear.

I took steroids for one week - a dose pac - and symptoms resolved, except I have more imbalance than pre-GK and hearing is worse.

Anyway, I took steroids for only one week, and gained 4 pounds and had a very swollen abdomen, and also oral thrush. These problems are gone. I was told to take steroids again immediately if I have another sudden onset of like symptoms. Ick, I agree, I don't want to take these nasty things again, but I will if necessary.

[RAB]

I was told that hearing loss so soon was rare, too.  Dr. said that tumor was right up against my cochlea.  Oh, well, I guess having an AN is rare, too!  I really don't need anymore "rare" problems!

Oral thrush?  Now you have me worried.  The roof of my mouth is starting to feel irritated!

[nanramone]

The thrush actually disappeared on its own several weeks after the steroids. I don't think this is a common complication of steroids, so maybe it had a different cause.

The doctor I saw also said this tumor is extremely close to the cochlea, so maybe that's why both of us had that sudden hearing loss. I'm prepared to lose all of it in time, because that's the only thing that doctor didn't sound optimistic about.

I hope things go well for you!

[suboo73]

RAB, 

So sorry to hear about your hearing loss and now steriods - very yucky!
As someone in W & W mode, i am very interested in your progress
[And i have heard of your doctors - my sister, BigSister has seen Drs. Judy & Bigelow.]

I hope you can stop the steriods soon - sounds like it will be short term. 
My thoughts and prayers to you for better days soon!

Sue

[yardtick]

I completely undertand the "mania" you are feeling, I was absolutely crazy when I was on them.  I had a major melt down at work 2 yrs ago and that's when I realised I could not work full-time, be a wife, a mother, a housekeeper and battle major headaches and facial pain, something had to give.  The steroids did help clear up my sinus infection, and I guess you could say they also enlightened me.  Oh yeah I did gain weight both times I was on them, though I never got the moon face but I know someone who did. 

Hang in there,
Anne Marie

[Brendalu]

RAB,

I got thrush when I took steriods after my AN surgery...after four days..so I got taken off them.  I took steriods for a year and a half while battling breast cancer and got a little bit of the "moon" face after three months...no weight gain either time..I was very closely monitored and I think that is very important.  Good luck
Brenda

[GM]

Wow can I relate!!!  I had a treatment with Prednazone (sp) and WOW!!!  That stuff was FREAKY!!!!!!!  It made me emotional, nervous, couldn't sleep, it was insane!!!   But...it really did work.  I noticed that the lower the dose (step down dosage), the better I felt.  Hang in there, the pay off is worth the chaos.     

Gary

[RAB]

Thank you all for your input and well wishes.  I feel like my hearing has improved over the last week, although the tinnitus is still very loud and changing throughout the day and I don't like the way my head feels.  I can't tolerate the heat very well.  I'm pretty sure it is from the steroids.  I go for a hearing test on Tuesday.  Hopefully it will show enough improvement to start weaning me off of the steroids.  I've never been so hyper in my life.  My husband thinks I've lost it!  I'm constantly excercising or walking or moving furniture around!  The house has never been cleaner.

Rosemary

[mk]

Sorry for your incidence of hearing loss, this is not at all uncommon, both before and after treatment. I have already had 3 of these episodes, so I can totally relate, they are so unnerving. The good news is that steroids are usually able to take care of this. It took me about 1 week of treatment at the maximum dose of prednisone to see improvement - by 2 weeks it was completely back and then I was on a slow taper. Tinnitus was changing constantly during that time (I don't usually have tinnitus), but during the time when hearing was being restored I felt like a cacophony of musical instruments playing in my head. It subsided after hearing was restored.

As for side effects, everyone reacts differently. I had the exact opposite reactions that most people have, I lost weight instead of gaining and no moon face (although my understanding is that it take much more prolonged use for this). I felt very dehydrated, and had "cold sweats" while on the maximum dose.
As for energy, I was on a steroid high, and what I didn't like at all was the "slump" once off the steroids. A tip that I learned during my last course was that it is better to take the dose in the morning, that way you get to burn all the energy during the day and can still get some sleep.

Good luck, I hope that the steroids will work for you without major side effects.

Marianna

[RAB]

Some good news.  I had my hearing test this morning.  My word discrimination improved from 4% to 65% and all frequencies improved by at least 15 decibles.  I'm waiting to hear from my Dr. about the steroids.  I've been on the max dose for 12 days now.  Luckily, I have not gained any weight yet, but for having this much energy, I should be losing weight!

Marianna, just curious, how is your hearing now, as compared to before GK and do you have any other side effects?

Rosemary

[mk]

Great news Rosemary about the improvement. You should see more in the days to come while you are still on the tapering dose. Even though they can have serious side effects, I do consider them a miracle drug for what the intend to do.

 The first time this happened to me (prior to GK), hearing went back to normal. In the months after GK I had a very small decline (but barely noticeable or measurable). Then after the second episode (6 months post-GK), hearing was restored to where it was prior to that episode. The third one, at 20 months post-GK was more severe, in that it took longer to come back. After finishing the steroids I started to experience a slow decline, to the point that now (without having had a hearing test for quite some months), I would say roughly that I am at about 50-60% discrimination and serious decline at some frequencies only (for example my husband's voice and the high pitched alarm clock  ). Overall though I consider it still usable, I can still hear from that ear, directionality is good so I don't complain.

As for other side effects, I never experienced side effects from the GK treatment itself - the very mild trigeminal issues I have are attributed to the presence of the tumor.

Marianna

[RAB]

Thank you for sharing your experience.  By the way, I get to start tapering my steroids down tomorrow...yea!!  I'm glad you mentioned that I could still see some hearing improvement as I taper down.

Thanks,
Rosemary

[Tisha]

Hi Rosemary,

Sorry I didn't see your post a few days ago.  3 weeks after my CK, I woke up one morning with sudden hearing loss.  I was on Decadron for 18 days, my hearing came back to almost exactly what it was.  I lost a few decibels in the 8000 range permantly, I think, but since that is not conversational db's, I'm not too concerned.

I was on an another round of steroids 2 months ago for nystagmus and balance.

Both times, I never gained weight.  I actually lost weight.  However, I could only sleep about 3 hrs each night, so i was mentally and physically exhausted towards the end of my steroids.  It took about a week off of them, for me to be able to get 6 hrs a night (I usually do 7-8).  The energy level is high, and I can remember the first time cleaning at 3:00 a.m., closets that had not been touched in 10 years.  My house was immaculate.  I hate steroids, so I'm happy you are starting to wean off of them.

Good luck, the AN journey can be a difficult one...day by day we have to take it.  Tisha

[nanramone]

All of this is so weird. I felt a loss of hearing several nights ago, then roaring tinnitus, which lasted about two hours, then gradually subsided. Then the hearing returned.
So the doctor said to take steroids if there is sudden hearing loss, but it resolved all by itself!!! This is so annoying!!!!