Author Topic: 2+ years post CK and having symptoms  (Read 6774 times)

teasely

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2+ years post CK and having symptoms
« on: June 03, 2008, 05:03:01 pm »
The last time I checked in with you guys, I just had my 18 month MRI at Stanford.  Dr. Chang said everything was going great, hearing was the same, and "promoted" me to a once-a-year schedule.  Ironically, a few weeks later, I was hit with a terrible case of vertigo.  It was very bad for a few days, then ultimately settled down.  No steroids needed.

Over the few months, it seems like I've been having more symptoms than ever!  Lots of brief spells of tinnitus, some mild vertigo, and just 5 days ago, my ear suddenly felt blocked and my hearing has noticeably decreased.  I can still use the phone on my AN side, but it's kind of distorted and muffled.  The pressure feeling goes up when there is noise of any kind.  I'm very upset by this latest development, as my hearing has been excellent up to now, with only tiny losses in the higher frequencies and still 100% speech recognition.   They prescribed a short course of Decadron, which I've only been on for a day.  So far, no change.  I'm also having some headaches and jaw pain. 

Has anyone experienced this sort of thing two years or more after CK?  The team says they rarely see any symptoms after the first 18 months.  During the well-known "swelling period" of 6-8 months I had no symptoms at all!  Do you think it's possible to be a late sweller?  I am going in for another MRI sooner than planned, but Dr. Chang doesn't expect to see anything new. 

Anyway, thanks for letting me vent!

leapyrtwins

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Re: 2+ years post CK and having symptoms
« Reply #1 on: June 03, 2008, 07:05:58 pm »
teasely -

sorry to hear about your new symptoms.

I had surgery, so I don't know the answer to your question, but there is a Cyberknife board where someone might be able to give you some feedback. 

Here's the link http://www.cyberknifesupport.org/forum/

Hope this helps,

Jan

Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

sgerrard

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Re: 2+ years post CK and having symptoms
« Reply #2 on: June 03, 2008, 08:51:15 pm »
Here is a link to one of my favorite bits of research, as recently posted by JB: http://anausa.org/forum/index.php?topic=6493.msg63049#msg63049

As you can see on the graph, there are some cases of late swelling, though not very many. The Decadron should help; give it a few days to work. Ibuprofen is good too.

Hopefully it is just a little phase the AN is going through, and nothing more serious than that.

Best wishes,

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

Shallie

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Re: 2+ years post CK and having symptoms
« Reply #3 on: June 03, 2008, 09:09:29 pm »
The last time I checked in with you guys, I just had my 18 month MRI at Stanford.  Dr. Chang said everything was going great, hearing was the same, and "promoted" me to a once-a-year schedule.  Ironically, a few weeks later, I was hit with a terrible case of vertigo.  It was very bad for a few days, then ultimately settled down.  No steroids needed.

Over the few months, it seems like I've been having more symptoms than ever!  Lots of brief spells of tinnitus, some mild vertigo, and just 5 days ago, my ear suddenly felt blocked and my hearing has noticeably decreased.  I can still use the phone on my AN side, but it's kind of distorted and muffled.  The pressure feeling goes up when there is noise of any kind.  I'm very upset by this latest development, as my hearing has been excellent up to now, with only tiny losses in the higher frequencies and still 100% speech recognition.   They prescribed a short course of Decadron, which I've only been on for a day.  So far, no change.  I'm also having some headaches and jaw pain. 

Has anyone experienced this sort of thing two years or more after CK?  The team says they rarely see any symptoms after the first 18 months.  During the well-known "swelling period" of 6-8 months I had no symptoms at all!  Do you think it's possible to be a late sweller?  I am going in for another MRI sooner than planned, but Dr. Chang doesn't expect to see anything new. 

Anyway, thanks for letting me vent!
I had CK at Stanford in July 2005.  I go back annually as I will July 1st with MRI and Audiogram in hand. All going well I will start going back every 2 years.  My hearing has remained the same which is 54% in the bad ear, it was 88% after surgery, but then the AN grew back.  I don't have and never did have the typical symptoms most people have had, but I have taste bud issues which are a pain, yet the say it has nothing to to with the CK, but no one has an answer for me so I just live with it.

ppearl214

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Re: 2+ years post CK and having symptoms
« Reply #4 on: June 04, 2008, 03:54:36 am »
teasely,

I have not shown swelling of my AN, but have experienced some of the same things you note.  In my case, possibly due to seasonal allergies (ie: ear fullness, etc).... when it flares up, for me, I try a short term course of OTC anti-inflammatory (ie: Ibuprofen) and antihistimine. Does seem to help.  Hope you feel better!

Shallie, a "welcome" to you. Not sure if you saw my post to you on your IReport but so thrilled to see you here and thrilled to have you here, participating on the boards.

Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

teasely

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Re: 2+ years post CK and having symptoms
« Reply #5 on: June 04, 2008, 10:47:33 am »
I guess I'm a bit frustrated at their incredulity that one can in fact experience symptoms 2 years out.  Although I do have allergies, they are not too severe.  I'm holding out a 1% chance that it's ear wax!  All I need is a doc to look in there for 5 seconds, but both my GPs are out this week!

Meanwhile, thanks to the California Supreme Court, my partner of 20 years and I are getting married this month.  Can't wait to be all hopped up on steroids for that!

MaryBKAriz

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Re: 2+ years post CK and having symptoms
« Reply #6 on: June 06, 2008, 12:30:53 pm »
Teasely,

Gook luck with your symptoms!

Congratulations to you and your partner. :)

Take care,

Mary
Diagnosed March 24, 2008, 1.1cm, right side, "Goldie" - small but mighty!! :-(
Hearing, lottsa balance problems and a few facial twitches before CK
CK June 2, 2008, BNI in PHX, Drs Daspit/Kresl, side effects,steroids helped. Getting "sea legs".
Apr 2012 - Still glad I chose CK

teasely

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Re: 2+ years post CK and having symptoms
« Reply #7 on: June 06, 2008, 01:23:13 pm »
Hey, thanks, Mary! 

So, had another MRI yesterday which showed no change from September.  I guess this is a good thing, although it doesn't explain what's going on.  I guess I'm not a late sweller, after all.  The hearing is still pretty much the same, and today I feel very clogged.  Sometimes, it feels like it's getting a bit better.  Who knows, though.  It might just be my imagination.  They upped my Decadron to 10mg/day for a few days before taking it back down. 

This is all getting me down, though I'm trying to stay positive!

Tumbleweed

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Re: 2+ years post CK and having symptoms
« Reply #8 on: June 07, 2008, 12:34:59 pm »
So, had another MRI yesterday which showed no change from September.  I guess this is a good thing, although it doesn't explain what's going on.  I guess I'm not a late sweller, after all.  The hearing is still pretty much the same, and today I feel very clogged. 

Teasely

What you're experiencing is probably in fact swelling after all. I talked with Dr. Chang a few days ago about post-CK swelling, and he said there are two types of swelling:

1. The type that shows up on an MRI as an enlargement of the tumor compared with its size pre-treatment, and
2. "Clinical swelling," in which the MRI shows no apparent change in size but there is swelling inside the tumor anyway.

The symptoms of both types of swelling are apparently similar.

The upshot of all this is that you probably shouldn't worry about another cause for your symptoms; this is probably caused by swelling and is temporary.

Dunno if this will help you or not, but it's worth mentioning how I combatted my own episodes of progressive hearing loss accompanied by fullness and loud tinnitus in the affected ear. These happened to me before I was properly diagnosed, out of the blue a couple times a year, for about 4 years. (Doctors originally thought I had an inner-ear infection called "labyrinthitis" and did not order an MRI for over 7 years after I began having vertigo attacks, etc.) :o

I found that I would have the hearing-loss/fullness episodes like clockwork on those rare occasions when I was constipated. Eating a lot of steamed leafy green vegetables would get things moving again and give me a big shot of Vitamin A, which some research has indicated is therapeutic for hearing. I also ate several large cloves of raw garlic immediately at the onset of symptoms, knowing that garlic has been shown to increase the respiration rate of cells and reasoning therefore that, since oxygen stimulates nerve-end growth, it might help get back some hearing. Anyway, I don't know if it was coincidental or not, but in each instance where I had a sudden acute "attack" of hearing loss and fullness in the ear, taking a mild laxative (such as prune juice), eating a ton of leafy greens and eating raw garlic restored my hearing about 90% of the way back to previous levels and completely reversed the fullness sensation within 24 hours. It also reduced my tinnitus about 98% in level, although only temporarily (it fluctuates in level now, higher on bad days and lower on good days when I get enough sleep and eat right). Again, I don't know if this was coincidental or not, but it worked for me every time over roughly six episodes of hearing loss/fullness/loud tinnitus. And since I've been eating really well and staying regular, I haven't had an attack of this sort for about 4 years.

I hope this helps you.

Best wishes,
Tumbleweed
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

er

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Re: 2+ years post CK and having symptoms
« Reply #9 on: June 07, 2008, 10:12:13 pm »
Hello Shallie

welcome in to the AN community.  Sorry you’re AN has grown back. What are they going to do with it?
eve

teasely

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Re: 2+ years post CK and having symptoms
« Reply #10 on: June 08, 2008, 07:07:23 am »
Tumbleweed -- thank you so much for your post.  I found it really encouraging.   Dr. Chang has not spoken personally with me so to hear that there could be swelling inside the tumor that would not be reflected on the MRI is brand new information for me, and does give me hope.  Right now, the worst thing is the sensation that sound is kind of bouncing off my ear and not getting in -- just a lot of pressure.  The actual tinnitus is not awful, although I noticed that after leaving a loud situation, it does get worse.

I'll try the leafy greens, etc.  Goodness knows that can't hurt, and since I'm on the Decadron, it'll give me something to stave off my hunger!

Again, thank you!


Tumbleweed

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Re: 2+ years post CK and having symptoms
« Reply #11 on: June 08, 2008, 11:22:34 am »
I'm glad I could help in some small way, Teasely. I hope you feel better soon!

Tumbleweed
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

teasely

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Re: 2+ years post CK and having symptoms
« Reply #12 on: June 13, 2008, 09:23:09 am »
An update.  No change in the ear pressure feeling.  It's been 2 weeks.  Had a hearing test yesterday down at Stanford, and I did have appreciable loss throughout all frequencies in the left year.  Speech recognition was still 96%. 

Decadron is not agreeing with me.  It's also not doing a darn thing, so I'm being weaned off. 

 :(

leapyrtwins

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Re: 2+ years post CK and having symptoms
« Reply #13 on: June 13, 2008, 12:23:51 pm »
teasely -

sorry to hear the Decadron isn't working - or agreeing with you.  That must be frustrating  :(

Where do you go from here?  Any other options?

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

teasely

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Re: 2+ years post CK and having symptoms
« Reply #14 on: June 13, 2008, 05:53:46 pm »
teasely -

sorry to hear the Decadron isn't working - or agreeing with you.  That must be frustrating  :(

Where do you go from here?  Any other options?

Jan

They're saying just ride it out and it might go away.  Of course it might not.  But I know I'll better after the stupid Decadron is over.

Kristina