EJTampa (Ernie's) updates

[EJTampa]

Just a quick update from me.  Yesterday, Saturday March 21st, I had a bout of heavy headed wonkiness with lots of pressure and all over head pain.  It started about mid day and continued to intensify.  I'm pretty sure this is in response to the decreasing dose of decadron that I have been on.  I am down to just two pills a day, but both at one time (so one dose every 24 hours).  That was my second day of that, today is my third.  After that, I am at 1 pill a day for 5 days, then I'm done.
 
I took my decadron in the early evening (with dinner) and took 2 tylenol as well.  Within an hour or so I was feeling back to "normal".  The pain was not unbearable at all, just annoying.  Once the decadron is finished, I think it will easily be controlled by an occassional ibuprofen.
 
Otherwise, my eyes still refuse to stay focused on anything more than say 10 feet away while I turn my head to the right.  I know this is what takes the most time, but it is still causing some disorientation for me.  When walking, it's like looking through the viewfinder of a video camera while travelling down a bumpy road.  I can't yet focus on people walking toward me when I'm out walking.  I just try to look at them and wave and say hello .
 
Now for the real strange thing.  When I lightly, very lightly, touch my SSD ear.  I can "hear" the rubbing noise from my finger.  I don't think I'm hearing it in the other ear.  It sounds like it's coming from my SSD ear.  Even if so, it's certainly not useful hearing by any stretch of the imagination, but just a few days ago I had nothing at all when I did this.  The surgeon told me he couldn't save the hearing, and I thought he said the nerve was cut.  Very strange indeed.
 
Quality of life is very much up there for me as a postie.  I do pretty much everything I did prior to the surgery, and exercise even more!  I'll be trying the driving thing real soon, and plan to return to work at about the 6 week point.  I am still on lifting restrictions, up to 10 pounds now, and continue to try NOT to sneeze.   The 10 pound restriction is hard to do because I forget sometimes.
 
That's about it.  Today has started off as a very good day, and we were blessed with some cooler weather for walking too!
 
Ernie

[sgerrard]

When I lightly, very lightly, touch my SSD ear.  I can "hear" the rubbing noise from my finger.

Before treatment, and even occasionally after treatment, I sometimes got this "crossover" effect. I would touch my left ear and hear a little sound in my right ear. Very weird. I suspect you are hearing it in the good ear, though, it just sounds like it is in the AN ear. I think the signal travels through your head somehow - like a BAHA, maybe. I doubt it is a sign you will get hearing back on the AN side, sorry to say.

Steve

[Syl]

Ernie:

Sneezing and coughing still hurt at 9 months post op. And, as if gagging when I brush my teeth wasn't bad enough, it hurts too.

Syl

[EJTampa]

I good with the sneezing and coughing.  As for the headache, if it responded to the steroid, and it seems to happen again prior to taking it, I would suggest telling your neuro.  I didn't have the headache as much as I noticed the swelling coming towards the end of my steroid treatment.  My neuro put me on another round of it and I was good to go after the second round.  I just wanted to make sure there was no pressure coming from anywhere so my brain could do it's healing. 

Cheri, great to hear from you!  I don't want to be on steroids for too long.  It seems like I've been taking them forever.  3 days of 4 pills twice a day, then 3 days of 3 pills twice a day, then 3 days of 2 pills twice a day, then 3 days of 2 pills once a day, and now I'm at the 5 days of 1 pill, once a day.  So I started with 8 pills a day and am down to 1 now.  That's 17 days of steroids, plenty I hope.  I think the swelling is mostly gone.  I still get a blocked feeling, with popping and crackling when I swallow, but not all the time.  No headache this morning at least.
 
I think I'll be fine when I'm done in a couple of days, but I'll be sure to let the doc know if not.  He is great at answering my emails.

shaking finger at Ernie:  Don't lift more than the docs said to lift, and no bending over either until you're given the go ahead.  Take the necessary time to heal from surgery while you ease back into daily activities. 
It's great to hear you're doing so well!  But do rest and take these six weeks to heal, slowly.  Slow, but steady!   

I do my best to follow the orders given to me.  I do forget about the weight restriction sometimes though.  Especially early on, 5 pounds for the first 2 weeks.  Do you realize how little 5 pounds is?
 
Yesterday, I cooked out on the grill for the first time since surgery.  Not that I couldn't have done it earlier, just never felt the urge.  I had a nice T-bone steak, about 1.5 inches thick.  I am happy to report that steak still tastes very good .
 
I extended my morning walk yesterday, and I enjoyed it.  I'm going to try it again today.  I didn't look at the time, so don't know how long it was, but mornings are so beautiful here right now.  I have to take advantage of them before we get into our hot and sweaty season.  Off I go!
 
Ernie

[nteeman]

Ernie,

I couldn't wait to get off the streoids as well--I counted the days. Also I must admit that I felt much better once I was off them. My incision and IV wounds healed completely once I was off them and over-all I started to feel much better, day by day, once off the steroids.

 

Neal

[joebloggs]

Ernie and Neal,

Have you/did you notice your sleep was rubbish when on the steroids? It's half 4 in the morning, I just took my 4am steroid half an hour ago and sleep is not a happening thing, took me ages to sleep when I first went off too...just wondering if it's related.  Didn't seem to have any issues pre-roids.

Cheers

JB

[cindyj]

I couldn't sleep either when I was on the steroids - think it's fairly common.  I also had terrible dreams while on them and an awful smell - still makes me ill to think about it - was the strangest thing .  Was VERY glad to get off of them!  Know they do serve a great purpose though.

You guys are all doing very well!

Cindy

[EJTampa]

JB,  I have heard that steroids do indeed interfere with sleep.  I remember that I was having trouble sleeping when I first started mine, but as the dosage decreased, my troubles did too.  Some of my sleeplessness could be attributed to the incline I had to maintain as well.
 
Are you tired during the day?  Even though I didn't get much sleep at night, I wasn't getting tired during the day.  It was almost as if my body didn't need the sleep.  Now, I'm getting 8 hours sleep each night, maybe 9 sometimes.  
 
Neal, you bring up a good point about the incision.  I have a spot in the middle that still scabs over, and hasn't healed right.  I bet now that I'm at the end of my steroids, my incision will heal better just as yours did.
 
Ernie

[nteeman]

Yes, I definitely slept better once off the 'roids'. 

Neal

[EJTampa]

Today is my 3 week anniversary since surgery.  I have been blessed with a near perfect outcome, outside of losing useful hearing in the AN ear.
 
Driving is nerve wracking.  Trying to pull out onto a busy street, looking quickly left to right, right to left, leaves me light headed and dizzy.  Making sweeping curves such as an on or off ramp really sends me loopy.  I almost have to close my eyes, or focus on something inside the vehicle.  I am doing the vestibular eye exercises, keeping focused on something while turning my head left to right, right to left, up and down.  I do wonder, though, if perhaps this is all I'll get back?  If so, I will just have to adjust to it.
 
I'm still walking every day, twice a day.  Today I extended my walk again, and am up to 55 minutes.  The evening walks are still the 30 minute walk.  I find myself eating more than I used to, but I haven't been gaining weight because of the extra exercise.  I do think my beer belly is beginning to pop a bit though.  And that's without drinking any beer...no fair!
 
I have set a date to return to work.  My boss is a very nice boss.  He would be willing to give me the full 8 weeks that we scheduled for just in case.  I am going to return to work after 6 weeks.  I'm hoping to get some of the driving anxieties taken care of by then .
 
To be honest, I miss work.  I like my job and the people that I work with.  In this day and age, you are lucky to have a job that puts food on the table, let alone have one that you enjoy doing.
 
I'm not sure how many more updates I'll do, since changes come slowly now.  My AN journey is promising to be shorter than most, which is a good thing.  I'm always looking forward to updates from new posties.  It kind of brings things full circle for me.
 
That's about it for week 3.  Thank you all for your wonderful support!  I'll see you on the other threads until I decide there's something worth posting here again .
 
Ernie

[SML]

A very happy 3 week anniversary to you Ernie.

TTYL

Scarlett

[Keri]

Happy 3 weeks! I remember at three weeks thinking, 'OK, I should feel good starting today!' I was having good days/ bad days. I was running again a bit (slowly) at 3 weeks. Now I'm 8 weeks. I'm feeling much better - and the time has flown by.
Do keep in touch. You can be the wealth of wisdom the newbies need!
Good luck on the driving and return to work. I have problems driving at times when I put too much eye ointment in my 'bad' eye. I try to stick to the neighborhood roads and not do too much traffic or freeways (kind of hard not to do traffic when you live in the DC area!)

Keri

[Rich56]

Hi Ernie,

Your in FL., your driving is fine

Seriously, we enjoy your posts, they're not only entertaining, they help people.  You have a big heart.  I believe you have a lot to contribute.

Glad you have a nice work enviroment to return to, and an understanding boss.

Happy 3rd

Rich

[Syl]

Driving is nerve wracking.  Trying to pull out onto a busy street, looking quickly left to right, right to left, leaves me light headed and dizzy.  Making sweeping curves such as an on or off ramp really sends me loopy.  I almost have to close my eyes, or focus on something inside the vehicle.  I am doing the vestibular eye exercises, keeping focused on something while turning my head left to right, right to left, up and down.  I do wonder, though, if perhaps this is all I'll get back?  If so, I will just have to adjust to it.
 
Ernie

At 3 weeks out of surgery, you still have some recovering to do. I'm not sure how much more everyone else imprves with the issue of looking from side to side when driving. But it does get much better. For me, it's not what it was pre-surgery, but it certainly is better than what you discribe. Give it time. It's like you said. You'll notice improvements at a slower rate, but you do continue to improve.

Syl

[leapyrtwins]

Ernie -

3 weeks already?  Wow, time just flies.

And driving already?  I didn't even attempt to drive until 6 weeks post op.  Your progress continues to amaze me 

The more time that goes by and the more you drive the more you'll get used to it.

I know what you mean about missing work.  I had a hard time being off - even though it was necessary.  You might want to consider returning part time before you go back full time.  I found that although I was chomping at the bit to get back to my normal routine and normal work day I was still very fatigued.  Working 1/2 days for a week or two made the transition to full days that much easier.

Just a thought,

Jan