Author Topic: One CK session and I have no taste buds that seem to be working  (Read 4163 times)

chloes mema

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Had my first CK procedure three days ago, since then everything I eat taste the same.  My tongue feels like it's been burned by hot soup or coffee.

Is this common?

I researched on the forum, this seems common for people that have had surgery but I only saw one person that mentioned radio surgery.  Apparently, I wasn't searching correctly, now I've found several posts regarding this subject so I'll go read. 

As a side note (I do go on, don't I?   :D ), I swear at one point during the CK procedure it smelled like something was burning.   ???

Karen
« Last Edit: May 06, 2012, 01:48:51 pm by chloes mema »
Diagnosed October 2011
Oct '11-9 X 6 mm left ear
Mar '12 - 1.25cm
Tinnitus, imbalance, and mild dizziness (ditsy)
My AN = Annoying Nuisance
Jan'12 W&W
May'12 CK completed
Oct'12 hemifacial spasms
Dec'19 It's back

PaulW

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Re: One CK session and I have no taste buds that seem to be working
« Reply #1 on: May 06, 2012, 03:00:19 pm »
I believe part of your facial nerve also provides part of your taste, not all of it just some of it.
So if your facial nerve is upset it can change taste.
 
Cyberknife certainly made my nerves grumpy for a while. Your nerves sound like they are grumpy too.

Had this weird headache to half my head for a couple of hours after Cyberknife. In hindsight it was probably caused by my facial nerve tensing weird muscles including weird stuff like glands. After a couple of hours the muscles got tired and started to ache. It went away within a few hours. My hearing and balance also got worse, but that got better over the next 3-4 weeks in particular. and then more slowly after that.

Never noticed a burning smell... But I did notice that if you close your eyes, when the beam comes on that everything gets a little bit brighter with certain beams!

Good luck with the next two treatments


 
10x5x5mm AN
Sudden Partial hearing loss 5/28/10
Diagnosed 7/4/10
CK 7/27/10
2/21/11 Swelling 13x6x7mm
10/16/11 Hearing returned, balance improved. Feel totally back to normal most days
3/1/12 Sudden Hearing loss, steroids, hearing back.
9/16/13 Life is just like before my AN. ALL Good!

Tisha

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Re: One CK session and I have no taste buds that seem to be working
« Reply #2 on: May 07, 2012, 06:47:22 am »
About a month after my CK treatments, I tasted metallic and lost much of my sense of taste for about a week.  I never had the sense of a burning taste.  It all came back, though.
1.7 x 1.0 x .9 cm (diagnosed Oct 2008)
1.8 x 1.2 x 1.1 cm  (July 2010-swelling)
1.5 x .9 x .9 cm  (Mar 2013 - 5 yr MRI)
Cyberknife at Stanford, week of 1/12/09 -  Drs. Chang and Soltys

chloes mema

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Re: One CK session and I have no taste buds that seem to be working
« Reply #3 on: May 07, 2012, 08:32:56 am »
Glad to hear that these symptoms are transient.

I realized this morning that I've had a headache everyday since the first procedure which is  unusual for me so I'm writing it off to the tumor / grumpy nerves.  Hopefully, that won't last long since I'm not suppose to take aspirin and Tylenol doesn't do anything for me.

Well,  3 1/2 more hours till show time!  Music, lights, radiation!   :D

My nickname is Sparky (came from being 2 feet from a lightning strike several years ago) so I was emailing friends that I'll probably be living up to this nickname by Wednesday.  One friend replied, at least now you can be your own night light. 

Karen
Diagnosed October 2011
Oct '11-9 X 6 mm left ear
Mar '12 - 1.25cm
Tinnitus, imbalance, and mild dizziness (ditsy)
My AN = Annoying Nuisance
Jan'12 W&W
May'12 CK completed
Oct'12 hemifacial spasms
Dec'19 It's back

KBL

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Re: One CK session and I have no taste buds that seem to be working
« Reply #4 on: May 07, 2012, 06:42:19 pm »
Hi, it has been 2 years since I had cyber knife.  I remember the smell of something burning during mine.  I did have a metallic taste at one point during my journey, But I do not remember if it was after CK, or my surgery.

Karen
5.6 cm. left side retrosigmoid surgery January 2010.  Dr. Villavicencio, Boulder, CO  Cyberknife April 2010  Left side  facial paresis started September 2010.  Gold weight implant Dec. 2010.  Total hearing loss on left side.  As of today, tumor still appox. 28x18x8 mm

chloes mema

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Re: One CK session and I have no taste buds that seem to be working
« Reply #5 on: May 08, 2012, 04:21:53 am »
Monday at lunch thought I had gotten some taste back & then had 2nd session so back to everything taste the same.  Some how it hasn't slowed down my eating any.   ;)

One more session of CK & I'm done!!!!!  Woo-hoo!   :D

Karen
Diagnosed October 2011
Oct '11-9 X 6 mm left ear
Mar '12 - 1.25cm
Tinnitus, imbalance, and mild dizziness (ditsy)
My AN = Annoying Nuisance
Jan'12 W&W
May'12 CK completed
Oct'12 hemifacial spasms
Dec'19 It's back

Bonnie B.

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Re: One CK session and I have no taste buds that seem to be working
« Reply #6 on: May 08, 2012, 07:25:35 am »
Congratulations!!  Only one more CK to go.   You will feel so relieved when you have completed the treatment.   As for everything tasting the same, I did not experience that with GK.  Are you going to celebrate?

It has been seven weeks now post GK and I am experiencing something new.   My affected ear is feeling fuller and fuller all the time.  It even feels like the "good ear" has some fullness.
If anyone reading this has experienced the same thing post GK, please let me know.  Other than that, I feel great.

Keep me posted.

Bonnie

1.7 cm AN
diagnosed January, 2012 - no hearing L ear
GK surgery done March 15, 2012 at Yale New Haven Hospital, New Haven, Ct.
Dr. Chiang and Dr. Yu