Update on Nancy Drew's GK

[Nancy Drew]

Fatigue has been horrible.  Called my doctor's office yesterday, and the PA said fatigue usually goes with symptoms caused by swelling.  I have had some minor issues with balance, speech discrimination and dizziness.  She said those things could be enough to cause fatigue.  PA prescribed steroid treatment, and I started it today.  A bit of an energy burst earlier, but after some exertion a bit tired.  Those kids at Children's Hospital wore me out today.....bowling on the Wii is a real workout!  Hearing seemed bad today...plugged ear.  I am staying positive, and I hope the steroids will do their job.  I keep telling myself it has only been two weeks today since GK.  Thanks for inquiring, Grace.  Nice of you to keep a watch on me.  Hope you are doing well.

Nancy

[sgerrard]

Hi Nancy,

Well, steroids were always a possibility, I guess. I join you in hoping that they will do their job. I still occasionally experience days where it seems like my hearing is down a little, but I think it is more an impression, and if it were measured, it would still be the same. I'm not sure whether the steroids will bounce back your energy level right away, but they should keep other swelling symptoms in check. Hopefully it will all blow over in the next couple of weeks.

Take care,

Steve

[Nancy Drew]

Hi Steve,

I really didn't want to go with steroids since I have had some problems with them in the past affecting my mood.  But, so far so good, but I am only through the first day and into the second day of the pack (Medrol 4 mg).  Tired this morning, but I stayed up late last night.  Hoping for better sleep tonight.  I agree with you about the hearing being more of an impression.  I still do my car radio test from time to time, and I notice that the hearing in my AN ear is often better than my nonAN ear (which was the case before GK).  I think it is a positive sign that my hearing appears to be preserved at pre-treatment level.  However, I do notice that the ear gets plugged sometimes, and I have to strain to hear from the AN ear.  I take note of the fact that people around me sometimes say, "You must be having a bad hearing day today."  I am sure my tumor is going..............WHAT!!!  It is figuring out what to do with the radiation.  I have lots to be thankful for.  I was worried about hearing issues, and it seems like all is going well there.....no SSD.  Hopefully the next time I post here, I will be up and going in full force.  What a journey this is.............the unknown is sort of hard for a "control" freak like me. Bumps in the road are likely to be expected.  Encouraging to hear such positive stories here.  Also, I admire those who are dealing with their struggles with a good attitude which in turn give us "newbie posties" hope. 

Nancy

[Jim Scott]

Nancy:

I think you're doing very well.  As you noted, 'bumps in the road' are to be expected.  No recovery - including my own - is totally smooth and without a few setbacks and/or problems.  If you've retained your pre-CK hearing in the AN-affected ear, you're already ahead of the pack, as it were.  I trust the steroids will be effective and not detrimental to your physical or mental health.  I think your attitude is quite positive and I'm sure you'll be just fine, bumps and all, because you can handle them. 

Jim   

[Nancy Drew]

Thanks Jim,

I'll have my first post GK hearing test early Dec.  I think the volume is fine, but I do think word recognition might be a bit off.  Maybe that will improve, but if not, it is something I can live with.  Thanks for your support.

Nancy

[GRACE1]

Nancy:

I go for my 2nd MRI on Dec 09 at Wake Forest.  The first MRI was 6 months after the procedure; it will be 19-months between MRIs.  Necrosis was happening on that 1st MRI, so let's hope all is dead, dead, dead. 

Grace

[Nancy Drew]

Hi Grace,

I hope your MRI in Dec. will show that the AN is dead, dead, dead.  Looking forward to hearing your good news!  My ear has been plugged up really bad today, and it seems like something is rattling around in my head.  I have three more days of steroid treatment left.  I feel a little down sometimes, but I am hanging in there.  I am ready for life to get back to "normal".  Things just don't seem quite right yet, but I am sure as time passes it will get better.  Still, I think I have it pretty good compared to some folks out there......so, I can't complain that much.

Nancy

[sgerrard]

Nancy,

If I'm not mistaken, you just became a hero member. There's something to cheer you up.

Steve

[Nancy Drew]

WOW,

I am glad you pointed that out, Steve!!!  I better be careful.  I might catch up with you! 

I slept 10 hours last night although I had to almost overdose myself on sleep meds before I finally fell asleep.  Two more days on steroids so maybe getting to sleep will be easier once I am off of them.  Good news is that I woke up feeling refreshed.  I have this weird sensation going on in my head.  Don't really know how to describe it, but I'll try.  It feels like my brain (I guess there is one in there!) is swimming around in my head.  Only lasts for a few seconds, but it is a freaky feeling.  Kind of makes my eyeballs vibrate, too.  I don't suppose radiation can affect eye sight, can it?  I have noticed recently that I don't see as clearly as I used to.  I use reading glasses sometimes, but my far vision has always been 20/20.  It is close to my annual eye exam so I'll see what the verdict is.  My eye doc has always said I have "young eyes" (whatever that means).  Maybe the eyes have decided to catch up with the rest of my "old" body!!!

Nancy

[robynabc]

Hi Nancy,

Just wanted to say,  sorry you are having some side effects.  Hopefully the Broncos cheered you up this week.

Haven't been around for a while and last I heard you were doing pretty good.  Hope you are better.

Robyn

[Nancy Drew]

Hey Robyn,

The Broncos win did lift my spirits.  Hopefully they will pull themselves out of the pit they have been digging. 

I am happy to report to all that I have felt pretty much like my "old self" today.  My ear isn't plugged, hearing is decent, balance is good, the brain is not swimming, and I took a 3 1/2 mile walk earlier with no problems.  Today is my last day on steroids, and it's only one pill today.  Maybe they worked!  Taking it day by day, but it sure is nice to have this good day.  I needed it.

Thanks to all,

Nancy

[Nancy Drew]

Hi Everyone,

Good news today.  Yesterday I called the doctor because I thought I was having some hearing issues, and the doctor said he wanted me to come in today for a hearing test.  Seems my hearing is the same as before I had GK.  Maybe I was having some sinus/allergy issues the past few days because I do feel like I am having a "good" hearing day today.  Also, my AN doc says he only knows of one case where a woman lost her hearing soon after GK (I am only three weeks and two days post GK).  I think he said if there is true hearing loss it might come up later...like three months or so down the road.  I was so elated that I had not lost any hearing that I wasn't really listening to what he said about hearing loss.  Has anyone had hearing loss come up later down the road post GK?

Nancy

[Sefra22]

Hi Nancy,
My hearing in my AN ear was at 70% diminished at the time of my GK.  At six months there was little change, but at ne year later it had worsened to about 80% loss.
Lisa

[sgerrard]

.. I thought I was having some hearing issues... Seems my hearing is the same as before I had GK...

Told ya so!

I have had that feeling before, it something about noise, or the tinnitus, or a little feeling of pressure - who knows, really. The good thing is that you've still got it.

The answer to almost any question about ANs that starts off with "has anyone ever..." is bound to be yes, someone has. I expect I will lose more hearing over time; I was probably starting to lose some anyway, as I am in my other ear, just from getting less young, which seems to happen every year now. 

I think Marianna pointed out in another thread somewhere that the big test will be at 6 months, to see if you are going to keep most of your hearing for a good while, at least. I'm just glad to hear that you are doing well so far, and seem to be headed toward a good outcome.

Steve

[Nancy Drew]

Hi Steve,

I just read that thread where Marianna posted.  She was right on with the info.  Matched with what my doctor said, and I think I just needed to hear it again.  The hearing test I had yesterday was really weird.  Isn't the booth supposed to be sound proof?  I heard people talking in the hall outside the booth.  I pointed it out to the audiologist, and she said it didn't make any difference.  She also said that the hearing in my nonAN ear (which has always had worse hearing than my AN ear) had improved.  How does that happen?   And, why can't they find different words to repeat.  When you have had a lot of hearing tests, you sort of remember the words over time.    I know you have a hearing aid, Steve.  Have you had any problems with it?  My mother has hearing aids, and it seems like she is forever going back to get them adjusted. 

I am happy I had a good hearing test yesterday.  I do think my hearing fluctuates, but perhaps this is true even for people with "normal" hearing.  Hopefully I will work my way out of the being "on guard" phase and sail into the "don't worry so much" zone.  Thanks for your smart words.

Nancy