Author Topic: 3 Months Post CK Side Effects?  (Read 9815 times)

marystro

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3 Months Post CK Side Effects?
« on: November 05, 2006, 10:11:00 am »
I am having some facial nerve pain lately.  "Fortunately" they are intermittent.  Started with my tooth then it went away after 1 week.  Now is the lower part of my nose (again  >:( - this is the one I hate the most).  Some facial numbness and occasional fatigue.  Tinnitus is definitely louder.

I know everyone's reaction is different.  But I am just curious if any CK posties also had similar side effects and wonder how long they last.  I am guessing the culprit is the swelling of the tumor...

I am not taking any medication post CK.  Comparing to surgery side effects that I have read, I am really embarrassed to even post this.  :-[

Mary
Mary
July 2006 - 22 x 18 x 20 mm
August 2006 - CK at Stanford by Dr. Chang/Dr. Soltys
February 2008 - 19 x 15 x 20 mm and stable
May 2009 - 17 x 14 x 18 mm

mellowrama

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Re: 3 Months Post CK Side Effects?
« Reply #1 on: November 06, 2006, 12:19:46 am »
Hi Mary,

sorry to hear you're having the pains!  I'm only 1 month out of ck now, but I've noticed my symptoms flexuate quite a bit.  Fortunately no pain, just wierd twitching and numbness...

Were you having pain before?  I figure as you mentioned that it's due to tumor swelling, although I've noticed more symptoms during a certain time of the month and I really have to be careful and not drink too much as my body is much more sensitive now.

melinda
22mm x 19mm x 12mm CyberKnife  9/25/2006 BNI Dr. Daspit/Dr. Smith/Dr. Brachman
Failed radiation - regrowth to 2.6cm 
Translab Surgery w/ House Docs 8/26/2009 Dr. Friedman, Dr. Schwartz, SSD, tinnitus. 
Baha surgery with Dr. Baker in OKC nov 2009
Baha revision surgery by Dr. Horn in ABQ 8/2011

marystro

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Re: 3 Months Post CK Side Effects?
« Reply #2 on: November 06, 2006, 08:51:01 am »
Hi Melinda,

I had the nose nerve pain for about a few days right before CK started.  I think the ones I am getting now are caused by irritation of the facial nerve by the tumor swelling.  They fluctuate also - come and go, different places.  I also have some numbness, no twitching however.  Some fatigue.  Since they are still tolerable, I am not taking any medicatoin.  Like you, I am taking it easy.  No stress.  I have to go to Seoul tomorrow on a business trip and my boss is upgrading me to first class  ;).  My trip to Beijing 2 weeks ago was fine.  I have sent an email to the doctors for their opinion.  I will be glad to share with you when I hear back from them.

Hang in there.  I think CK is taking its effect and we will both get through this.  Phyl and others are giving us hope...  ;D

Mary

Mary
July 2006 - 22 x 18 x 20 mm
August 2006 - CK at Stanford by Dr. Chang/Dr. Soltys
February 2008 - 19 x 15 x 20 mm and stable
May 2009 - 17 x 14 x 18 mm

ppearl214

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Re: 3 Months Post CK Side Effects?
« Reply #3 on: November 06, 2006, 12:51:39 pm »
Hey Mary and Melinda,

Mary, I saw your post on the CK board and hoping you get good responses there. Like Melinda, I don't have "pain" but occassional facial numbness, which, at this point, has gone from "aggrevating the crap outta me" to practically non-existant.

Sending you hugs the pain allieviates soon.

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

marystro

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Re: 3 Months Post CK Side Effects?
« Reply #4 on: November 06, 2006, 02:48:44 pm »
Hi Phyl and all,

I have reply from Dr. Chang.  My symptoms are so mild that I feel really embarrased to even report them.  Anyway, he said they usually last between 3 months and 1 year and should subside over time.  He also wants me to report back to them after my trip this week.  See, I feel better already from your and docs' reassurance.

Huggles to all,

Mary
Mary
July 2006 - 22 x 18 x 20 mm
August 2006 - CK at Stanford by Dr. Chang/Dr. Soltys
February 2008 - 19 x 15 x 20 mm and stable
May 2009 - 17 x 14 x 18 mm

ppearl214

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Re: 3 Months Post CK Side Effects?
« Reply #5 on: November 07, 2006, 08:50:56 am »
Great news Mary.... my new mantra... "day by day, inch by inch".  My hope is that you will find each day a bit easier when it comes to your side affects.  Now 7 mos post CK, I have found that, not only has the time flown by, but my side affects eased such a great deal. Every now and then, they peek out to say their "hello's" but otherwise, I hope it gets easier....

Hang in there you 2! I'm so thrilled you all are doing as well as you are! :)

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

marystro

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Re: 3 Months Post CK Side Effects?
« Reply #6 on: November 08, 2006, 08:02:45 am »
Phyl - Thanks for the ever encouraging words!!! :-*

Love that picture!  You two look so great together!!  Bring him out to the west coast when we have our get-together or I have to travel to MA to meet you guys.  This forum has been so terrific that I feel like many of you are family.  I am addicted and everyday I check into the link to see how everyone is doing.  I think I talk to you all more than I talk to my real family sometimes (it's bad, isn't it?  Got to change that ;))

FYI - as I reported in the CK Forum, I feel fine after a 13-hour flight and just landed in Seoul.  I think the doctors are right, flying (even long haul) does not worsen the symptoms, at least in my case.

Mary
Mary
July 2006 - 22 x 18 x 20 mm
August 2006 - CK at Stanford by Dr. Chang/Dr. Soltys
February 2008 - 19 x 15 x 20 mm and stable
May 2009 - 17 x 14 x 18 mm

ppearl214

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Re: 3 Months Post CK Side Effects?
« Reply #7 on: November 08, 2006, 10:51:22 am »
Phyl - Thanks for the ever encouraging words!!! :-*

Love that picture!  You two look so great together!!  Bring him out to the west coast when we have our get-together or I have to travel to MA to meet you guys.  This forum has been so terrific that I feel like many of you are family.  I am addicted and everyday I check into the link to see how everyone is doing.  I think I talk to you all more than I talk to my real family sometimes (it's bad, isn't it?  Got to change that ;))

FYI - as I reported in the CK Forum, I feel fine after a 13-hour flight and just landed in Seoul.  I think the doctors are right, flying (even long haul) does not worsen the symptoms, at least in my case.

Mary


Mary, tickled you arrived safe and sound and without any cabin air pressure interference. YOU, my dear, have given me a sense of relief knowing your CK was more recent, you did one heck of a flight to Seoul and are doing fine!  Thanks SOOOOOOOOOO much for your reassurance.

Aw, shucks about the picture... more on my crappr...er... frappr page.... :)

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

SuzeAN

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Re: 3 Months Post CK Side Effects?
« Reply #8 on: November 08, 2006, 09:01:23 pm »
Yes those side effects do go away with time, at about 3-5 mos I had some dizziness too and a few headaches.  But at one year I really do feel good, I know its still there, and if I didn't have tinnitus I would probaly forget I had gone thru this (except for the yearly MRI I have to
do). 

Hang in there!

Cheers,
Sue (Las Vegas)

PS Pearl what a great photo!
2.5 cm, left side
CK-Barrows 10/05

Kilroy1976

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Re: 3 Months Post CK Side Effects?
« Reply #9 on: November 08, 2006, 10:05:00 pm »
I also have the pain that moves around and varies in intensity. Personally, I think that it's the facial nerve's reaction to the radiation rather than swelling of the tumor, but I have no evidence to back up that thought. I take Neurontin, and that seems to help quite a bit.
1.8cm AN
Linac
December 13, 2005
Shands Hospital--University of Florida

ppearl214

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Re: 3 Months Post CK Side Effects?
« Reply #10 on: November 09, 2006, 09:36:37 pm »
Thanks Suze... what a motley couple we make, eh?

Kilroy, like you, I'm on neurontin (200 mg/am, 300 mg pm) for any pain (I also have pain from other medical ailments). It does seem to help and also take low dose valium (2mg) 1x/day to help with the balance.

I know, for each of us fairly new out of radio-treatments that if we just give it time, have a little faith and lots of encouragement from the crew of the PBW, (as my mum always says), "this, too, shall pass"... and it will! :)

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

marystro

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Re: 3 Months Post CK Side Effects?
« Reply #11 on: November 14, 2006, 12:18:16 am »
My facial pains seem to have disappeared again.  Long haul flights did not worsen my symptoms at least in my case.  Things are indeed looking brighter!!  *Swirling around the room for a little celebration!!! - we should all celebrate even little things, like no pain for one day, or big things, like a wedding, along the way!*

Big test coming up - another trip right after Thanksgiving.  This time to Bombay in 5 days!!!  Keep all your fingers crossed for me please :P.  You guys are so great in conquering anxiety  :-*!!!
Mary
July 2006 - 22 x 18 x 20 mm
August 2006 - CK at Stanford by Dr. Chang/Dr. Soltys
February 2008 - 19 x 15 x 20 mm and stable
May 2009 - 17 x 14 x 18 mm

Sue

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Re: 3 Months Post CK Side Effects?
« Reply #12 on: November 14, 2006, 01:49:01 am »
Hi

I've been noticing a little pain in my face lately.  It scares me, because I think it may be the start of full blown neuralga.  Don't want that.  It's just a pinprick of an instant of mild pain. No one else has mentioned the cold nose thing...am I the only one who has that?  But lately I haven't noticed it as much.  I still have facial numbness, and it extends up into my scalp area but either I'm getting used to it or else it's getting a little better, because it doesn't bother me as much as it did. For me it's just hard to describe.  It would be so nice if this just all went away.  So nice.  Really nice.  Really. 

Sue in Vancouver
Sue in Vancouver, USA
 2 cm Left side
Diagnosed 3/13/06 GK 4-18-06
Gamma Knife Center of Oregon
My Blog, where you can read my story.


http://suecollins-blog.blogspot.com/2010/02/hello.html


The only good tumor be a dead tumor. Which it's becoming. Necrosis!
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marystro

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Re: 3 Months Post CK Side Effects?
« Reply #13 on: November 14, 2006, 10:21:25 am »
Hi Sue,

I don't think you should worry too much about neuralgia.  See my reply in "TRIGEMINAL NERVE" in Radiation / Radiosurgery.  I found lots of reassurance from my doctor who explained to me what "true" TN is about.  It helped me in subsiding my anxiety.
Mary
July 2006 - 22 x 18 x 20 mm
August 2006 - CK at Stanford by Dr. Chang/Dr. Soltys
February 2008 - 19 x 15 x 20 mm and stable
May 2009 - 17 x 14 x 18 mm

ppearl214

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Re: 3 Months Post CK Side Effects?
« Reply #14 on: November 14, 2006, 02:42:36 pm »
Hi

I've been noticing a little pain in my face lately.  It scares me, because I think it may be the start of full blown neuralga.  Don't want that.  It's just a pinprick of an instant of mild pain. No one else has mentioned the cold nose thing...am I the only one who has that?  But lately I haven't noticed it as much.  I still have facial numbness, and it extends up into my scalp area but either I'm getting used to it or else it's getting a little better, because it doesn't bother me as much as it did. For me it's just hard to describe.  It would be so nice if this just all went away.  So nice.  Really nice.  Really. 

Sue in Vancouver

I'd rather choose to be a pain in your neck, Sue! ;)

You and I, as we know, are on the same schedule as to timing of our treatments... even though different treatment choices. Like you, the occassional tingle or numbness and such... we knew going into radio-treatments that down the road, some of these things may crop up every now and then....so..... me thinks that you and me just hang tough together, remind ourselves that "day by day, inch by inch" and we certainly do know that our good days out-number our bad days!  Glass is 1/2 full hun! Hang in there with me! :)

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