10 months and counting

[CC]

Hey all

Sorry to have been away for so long.  Thought I'd drop in and say hi and catch up with you all.  And it seems to have been an eventful and happy year for all of you.  And I realise I posted in April then forgot to check the post adfterwards so have just read all your wonderful messaages.  Seems you all are having a fun time without me!

Well my 6 month MRi showed no further hearing loss and "liquification".  Yes that's right the sucker's melting like the wicked witch of the west.  Apparently it's dying fast which is great by me.

Only icky bit with this one is that I've had some swelling and migraneous headaches lately and gone temorarily hard of hearing so have been on a course of steroids.  Evil things!  They made me feel like going to sleep all the time rather than pumping iron at the gym.  Never mind they did the trick and I would recommend everyone take my lead and not assume every headache and subsequent deafness is sinus related.  I was convinced this was a bad year for allergies and my sinuses were shot.  All is improving now though and I'm looking forward to getting back to normal again.  Small price to pay for not having one's head cut open isn't it.

I would love someone to do a study on the relationship between sinuses and ANs as a number of us have reported problems on the AN side.  The Stanford guys said that the sinus pressure/swelling has made the tumor swelling and aches worse.  But hey a couple of days on roids isn't too much to take is it.  And it didn't stop me all that much.  Day four into the roids I hiked 15 miles through the mountains of West Virginia.  Hmm didn't I hike 13 miles in Yoesmite immediately after my CK?  I must remember to tell my husband to stop taking me hiking so much.  But it did clear my sinuses!

I am interested in whether anyone's ever trained in lip reading/speech reading or knows anything about it.  The swollen AN's resulted in some loud but irregular tinnitus and I'm missing out on heaps of juicy conversation (let alone asides at meetings).  So I thought I may teach myself to lip read.  No bad skill in my industry I can tell you.

In other news I keep stumbling across people who had an AN treated or know someone who had one treated.  For a "very rare condition" there sure are a lot of people out there aren't there.  And finally, a confession.  I swore I'd never use it, really I did, but when my ipod's hard drive fried itself (while I was having CK actually) and the fine folks at Apple refused to honor the warranty I took it back to Best Buy and used the "but I have a brain tumor and use my ipod to deal with the pain" excuse.  Amazingly they actually honored the warranty and fixed the darn thing.  So sorry all to use the AN for such flagrant self interest but sometimes it's necessary. A girl needs her music.

Hope you are all well. 
CC

3cm right side AN
Cyberknife 10/28/05
Dr Chang
Stanford

[shoegirl]

CC,

So glad to hear from you!  As I said many times, reading your experiences helped me get through my CK.  Glad to hear all is well!   Hope your CK journey continues to be a success! 

Keep us posted!  

[jamie]

Only icky bit with this one is that I've had some swelling and migraneous headaches lately and gone temorarily hard of hearing so have been on a course of steroids.  Evil things!  They made me feel like going to sleep all the time rather than pumping iron at the gym. 

glad to see your back and doing well CC, i wondered where you were....

just a side note about steroids, there are different kinds, the ones you were given were 'anti-inflammatory' steroids which don't build muscle, they just reduce inflammation (like cortisone, etc.), the ones for the gym are anabolic steroids which are totally different and would not help reduce swelling....funny though that they made you tired, i never took any but alot of people say it keeps them awake....

[CC]

Hey Jamie

I was awake on the steroids alright - most of the day and night.  That's probably why I was so tired.  But they really sapped my energy unlike the prednisone they initially gave me before I was diagnosed with the AN.  And I noticed they played havoc with my blood sugar.  As long as I ate something small every hour I was ok - but leave it longer than that and I got really spacy.  I read online they can do this.  Shame it wasn't in the pharmacy's info attached to the pills.

What's strange, and I really should post about this separately, is that the skin on my head where the AN is located (and the areas surrounding it) is continually sensitive.  It always seems as if I've been whacked on the side of the head - not badly but enough to feel it.  I wonder if anyone else has experienced this or whether it's my personal alien just pushing the boundaries in its death throes.

How are you going?

CC

[ppearl214]

Hey CC! Great to see you!  Thrilled with the update and that the "booger" is actually melting/liquidfying!   thrilled to hear you are doing well and following along with the CK gang so I can understand what I experience during this process as well.   BTW, my apt was never so clean before (well, except for the day I moved in) until the Decadron!  3am floor/bathroom cleaning! Nothing like it! I think VancouverSue will agree on that one!

Great to see you again... please keep us updated on the progress!
Phyl

[marystro]

Hi CC,

Is your tinnitus is still loud?  Mine is getting a bit louder than before CK.  Hope it's not long lasting.  I had some funny dull feeling on the top of my head a few days but is gone now.  May be it's the radiation through my head...  But according to the CK forum's doctor, swelling usually start after 6 months.  So, theoretically there should not be any dull feeling anywhere?

Mary

[tony]

I saw your note you must be pleased
with your recovery.
Top-line, the lipreading is definately worth it
your comprehension of speach improves
(even if your hearing does not)
you may find you are already doing it
(some find they get scores of 60% on the first lesson
- the brain has already kicked etc)
best regards
Tony

[jamie]

Shame it wasn't in the pharmacy's info attached to the pills.

Yeah, that is strange. Seems they list every possible side effect nobody ever gets from drugs, funny they would miss the most common, lol.

What's strange, and I really should post about this separately, is that the skin on my head where the AN is located (and the areas surrounding it) is continually sensitive.  It always seems as if I've been whacked on the side of the head - not badly but enough to feel it.  I wonder if anyone else has experienced this or whether it's my personal alien just pushing the boundaries in its death throes.

I didn't really have that issue, but everybody reacts differently. I don't think the AN would affect skin though, perhaps your nerve endings are just sensitive as they recover from the radiation....

How are you going?

Very well. Signs of shrinkage, increased necrosis, and no symptoms or side effects whatsoever. Until I remember to check on everybody here, I forget anything ever happened.