Author Topic: CK - One down, two to go!  (Read 4790 times)

chloes mema

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CK - One down, two to go!
« on: May 04, 2012, 10:22:55 am »
One down, two to go!

I’m alive and my head didn’t explode, that’s the good news.

Before the procedure I spoke with Dr. Greenberg.  I asked what I might experience.  He said most likely nothing!  May have some swelling but he did not want to give me meds for that unless absolutely necessary.  He also said that a few months out I could loose some hair in the area of the radiation behind my ear.  He also spoke briefly about mild facial paralyses which should / could / would resolve itself.

Also spoke with Dr. Bartels.  I told him that Wednesday morning I woke up with my “bad” ear feeling totally clogged and having problems hearing.  He said if it doesn’t go away to call and make an appointment.  I called this morning, got an appointment for next Wednesday since it is getting worse.  I don’t believe this has anything to do with the radiation since it started two days prior to radiation.

Now back to the actual CK procedure.  It was not the most pleasant experience mainly because of the way they had me positioned on the table with the mask.  Thank heaven for Valium! Remember the mask is molded to your face and head with you laying flat on your back looking up towards the ceiling.  The radiologist had first set me up that way yesterday but then came back in the room a few minutes later, removed the mask, told me to turn my head slightly to the right then put the mask back on me and screwed it down to the table.  Now my chin on the right side is very uncomfortable and my brow bone on the left side is very uncomfortable besides the fact that the entire mask is extremely tight.  About the time I thought I couldn’t take it any longer the radiologist came in to tell me the first treatment was over.  Thank heaven!

When I went out to the waiting room my husband said I had “cyberknife waffle face”!  The mask had actually left impressions all over my face.  Truthfully, I’m surprised my chin and brow are not black and blue, that’s how tight and uncomfortable it was.  Dr. Greenberg asked me if I watched the whole thing.  I told him I couldn’t get my eyes open in the mask.  He seemed surprised.  Obviously, he’s never had this done!  You know doctors should “sample” what their patients experience; just my humble opinion. 

As for the actual radiation, I couldn’t feel anything.  The machine hummed, clunked, and made other noises but that was it.  I took a CD that I knew would play for at least an hour, which was very soft, calming music for me.  I laid there, did breathing techniques I’ve learned from yoga classes, and thought of all the great things I’ve enjoyed most in my life.  That seemed to work to keep me still for 40 minutes.

On my way out, I asked Dr. Greenberg if I could take aspirin, which he said was fine.  The back of my head hurt.  Don’t know if that was from how I was positioned on the table or was actually from the CK treatment.

As to how I feel today.  I’ve had mild queasiness in my stomach, I think my vision is some what blurry but clears up (spoke with Dr. Greenberg, he said this is probably due to dehydration because the optic nerve was far from where they radiated), the back left side of my head doesn’t really hurt but I’m aware of it (I’m assuming that’s where they radiated) (asked about this also, he said most likely because of the weird position I was in for 40 minutes), and my taste buds are almost non-existent (forgot to ask about this).  Nothing has much flavor.  Had hot sauce on my scrambled eggs this morning and really couldn’t taste it.  So it will be interesting to see how these issues play out after the next two sessions.

I will keep you posted on sessions two and three.  Session two is Monday and session three is Tuesday.

Thanks for all your encouraging emails and prayers it was all welcomed. 

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

MDemisay

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Re: CK - One down, two to go!
« Reply #1 on: May 04, 2012, 10:53:00 am »
Karen,

Thank you for keeping us updated :o WOW! A real eye closing experience!

 I should remind you to complain about discomfort, it is the technicians job to keep you comfortable during the procedure.

I will PM you further.

Please do your best to rest this weekend, friend!

Mike
1974 - Dr. Michelson  Colombia Presbyterian removal of 3 Arterio Venous Malformations
2004- Dr. Sisti  NY Presbyterian subtotal removal of 3.1 cm AN,
2012 - June 11th Dr. Sisti Gamma Knife (easy-breasily done)"DEAD IRV" play taps!
Research, research, research then decide and trust in God's Hands!

TJ

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Re: CK - One down, two to go!
« Reply #2 on: May 04, 2012, 11:41:45 am »
Karen

I am glad the first session went pretty well.  When we go through things not experienced before all kinds of things get into our heads.  As for opening your eyes with the mask on, I could not do that either as it really is fit tightly.  And also know at the end of treatment, they will give you the mask if you would like.  I have mine sitting on my desk at home.

Good luck on the next two treatments.

TJ

chloes mema

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Re: CK - One down, two to go!
« Reply #3 on: May 04, 2012, 12:07:56 pm »
TJ

I told them I was going to hang my mask on the wall at home but first I have to put a wig on it.   ;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

BeckyMax

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Re: CK - One down, two to go!
« Reply #4 on: May 04, 2012, 06:01:51 pm »
Thank you for posting your experience.  I look forward to reading of your remaining 2 and the recovery.  Hope that you are more at ease with your decision now.

Becky
7mm x 5 mm Left AN, diagnosed 2/9/12
7mm x 6 mm  8/12
9mm x 7 mm  8/13
Cyberknife 12/13

chloes mema

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Re: CK - One down, two to go!
« Reply #5 on: May 05, 2012, 11:46:04 am »
Thought I'd let you know how I feel two days after the first CK procedure.

My stomach is fine, my vision is fine, the back of my head and neck are fine.  I think my taste buds are starting to recover but still don't have much taste yet.  I had a lot of dizziness this morning but that has diminished for the most part.

Went to yoga class this morning.  Noticed that my balance was worse this Saturday than last Saturday especially on my left side which is my AN side. 

Other than that I don't feel any different than I did before the first procedure.  Maybe even feel a little better. 

I'll keep posting as procedures happen!   ;)

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

chloes mema

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Re: CK - One down, two to go!
« Reply #6 on: May 06, 2012, 09:13:24 am »
Third day after first CK procedure.

Dizziness got really bad last night but is gone today replaced with balance issues.  Balance is not quite as bad as before the procedure but I'm very aware of where I can grab hold of something solid as I move around.  Also, tinnitus is getting worse.

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

ppearl214

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Re: CK - One down, two to go!
« Reply #7 on: May 06, 2012, 09:43:49 am »
Karen

All I will say is this....

I am 6 years post CK..... the doctors have deemed me a "done deal".... may the steps that you are taking now be right in the 6 yr path that I have taken.... some minor hiccups along the way.... but, in the long run.... for the hope that the doctors tell you that your AN journey is also a "done deal".

Hang tough.... you are a "Toastie Postie" (ie: radiated post-treatment) and for that, I congratulate you... and now... with possible hiccups, as you are noting.... may your path be the same as mine.

Wellness wishes to you! Remember.... "day by day, inch by inch....."

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

chloes mema

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Re: CK - One down, two to go!
« Reply #8 on: May 06, 2012, 01:32:57 pm »
Thanks, Phyl   ;)

I told my PCP that after this I'll be a "post toastie"!  Took him a bit to get it but then he said, "you're something else", chuckled then left the room. 

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

PaulW

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Re: CK - One down, two to go!
« Reply #9 on: May 06, 2012, 03:23:36 pm »
After Cyberknife my balance was pretty bad, I didn't realise how bad until I was confronted with a real world situation.
I had my Cyberknife treatment done in Germany as I live in Australia and Australia doesn't have a Cyberknife.
So 1 Day after Cyberknife, I drink a small beer... which is 500ml.... to celebrate the treatment, and the start of my journey home.
Little did I realise one beer was going to totally trash my balance.

I caught the underground, the seats were all full, I was standing, the train took off, and I fell on top of a beautiful German woman.
I dont quite know what she said, but I thought I heard some german equivilant to "pervert".....

I was nearly going to say, "Oh I am sorry, I have a brain tumour, and it was treated yesterday by a robot thingy, I really have only had one beer".... But I really didn't think she was going to buy it.
 
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!

ppearl214

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Re: CK - One down, two to go!
« Reply #10 on: May 06, 2012, 03:36:44 pm »
Thanks, Phyl   ;)

I told my PCP that after this I'll be a "post toastie"!  Took him a bit to get it but then he said, "you're something else", chuckled then left the room. 

Karen


Love it when I tell my docs about "wonky head" and have to define for them (ie: that dizziness with head-disconnnect).   :)

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