CK coming up week of April 5th and I'm Scared *&%#less!!

[lalehjg]

Hello all!

My CK is coming up week of April 5th with Drs. Chang and Soltys.  I am travelling from VA to CA to be treated.  I am thankful that I will be in such great hands.  I have that to keep my confidence level up.

I am scared though because I am not sure what to expect with vertigo/nausea and drug effects.  I had an ENG test which was so debilitating I passed out from exhaustion on the waiting room chairs after the test for an hour.  I could hardly walk after the test.  It was terrifying.  Definitely didn't do much to increase my confidence level dealing with this tumor, but I'm keeping my chin up.

Do they always give you decadron and ativan before/during CK?  Do you sleep the whole day after treatment?  How long should I expect to be groggy?  Can I go back to work right away?  I hope so.

THanks again all!

Laleh

[sunfish]

I just finished CK last Thursday. I've had my ups & downs the last four days.  Steroids are always really hard on me, in terms of mood swings and serious insomnia.  It seems like it's taken several days to get back on track.  I thought I would return to work today, but only slept two hours last night, and decided to stay home one more day.  I haven't taken any more steroids since the last day of treatment.  Effects of the actual treatment have included some pressure/dull ache on AN side, lots of tinnitus, and some increased equilibrium problems. In general, I feel like the meds have been harder on me than the treatment so far.

I know you're really worried about your past experiences with vertigo, and this was a concern for me too.  I had an episode of severe vertigo in late January, which resulted in the MRI and diagnosis.  It took me a good couple weeks to feel entirely stable again after that episode.  So far, I've been relieved that I haven't experienced too much of the dizziness/lack of equilibrium at this early point after treatment. It's hard to describe that feeling, not really vertigo, but I know you know what I mean.  I'm thinking the ativan affects folks differently - I don't think I would have needed so much, but it does help you snooze/hold still for the treatment.  Really, really, don't be scared.  I just did the treatments, and rested all day after.  Will keep you posted! 

[leapyrtwins]

Laleh -

I didn't have CK, I had surgery, but I know that you are definitely in wonderful hands with Dr. Chang.

You'll do great.  Believe it 

Jan

[lalehjg]

Thank you so much Sunfish and Jan.  I appreciate your comments.  I know I am in great hands with Dr. Chang.  That's one great thing going for me!

Sunfish, your account of your experience with CK treatment is very helpful.  I had no idea I would be given meds like that for the treatment stage.  It helps to know what to expect.  I know what you mean about the not quite vertigo-like experience.  I have it quite a bit. 

Keep writing about your experience post CK.  I am thinking of you and praying for your quick recovery.  I will keep following your string on your progress.

Do you know how long you are supposed to be on hte Decadron?  How do you combat the hunger?  Could you have driven after the CK?  It doesn't sound like it given hte Ativan effect.  Let me know.

thanks again!

laleh 

[ppearl214]

Hi laleh

I know you are aware of many AN CK'ers... from here and on the CK Forums..... ... and you have learned about Steve Gerrard, doing great on his CK journey... and you are (I believe) aware of Mark, who is now 8+ yrs post CK for his AN.... and about me...... 4 yrs post-CK..... and soooooooo many others that have already walked in the shoes you now wear.  

Take peace in knowing sooooo many before you have done well.... learning from the fresh experience of sunfish should definately help........ and know we are here for you.  Take from us all that you have learned.... find peace in your soul that you are doing the right thing for you and your particular situation.... and heck, you got all of us cheering you on.

Peace in your soul you are doing the right thing for you and your situation..... take pride in knowing you have done your homework and can face this challenge head on (sorry for the pun! )

funny.... you are having your CK on the exact ANniversary of my CK treatment 4 years ago..... maybe a little good Karma going on?

Hang tough!
Phyl

[lalehjg]

Thank you Phyl!

That is so sweet of you!

By the way, are you on YouTube talking about your CK experience?  I think that was you, and you were so inspiring!  And so positive!  (You are that even if that wasn't you on YouTube!)

It helps to hear about other people's experiences.  I have been in touch with Steve also, and read Francesco's detailed account of his CK experience.  That has helped too!  As I get closer though, I'm having jitters.  I guess that's normal, but I always know I have this forum and the wonderful courageous people in it to support me!

[ppearl214]

Thank you Phyl!

That is so sweet of you!

By the way, are you on YouTube talking about your CK experience?  I think that was you, and you were so inspiring!  And so positive!  (You are that even if that wasn't you on YouTube!)

It helps to hear about other people's experiences.  I have been in touch with Steve also, and read Francesco's detailed account of his CK experience.  That has helped too!  As I get closer though, I'm having jitters.  I guess that's normal, but I always know I have this forum and the wonderful courageous people in it to support me!

Yes, that's me on YouTube (now also on the CK website, under "Patient Stories" )  I look like crap but the message is the same... to do your homework, talk to others (forgot about Francesco... he'd brain me for that!) and go with your gut... which is what you are doing.

Jitters are normal.... for any medical procedure.  "Fear of the unknown" can be conquered if you find in your soul that you are doing what is best..... and yeah, we're cheering you on!  

Yeah, we are a terrific lot, aren't we?

Hang tough!
Phyl

[sgerrard]

Based on your topic title, perhaps we should be discussing milk of magnesia.

I had one decadron each day of treatment, and no atvian. The steroid got me a little wired, but I still slept fine, and with the last treatment on a Friday, I was back at work on Monday. I did feel less than 100% for a while, though.

I can't think of any reason why you would have another experience like  the one you had with the caloric ENG test. That test can elicit strong reactions, as happened to you. I don't think anything in the course of CK treatment is likely to produce that kind of effect.

So hang in there, you will ace this thing.

Steve

[Tumbleweed]

Laleh:

Dr. Chang was my doctor, too. I can't say enough great things about him. He is so dedicated to his patients and is one of the world's leading authorities (if not THE authority) on CK. You are wise to travel to Stanford to be treated by him, because you just really upped your odds of successful treatment.

I, too, was very scared of my CK treatments. But CK turned out to be a miracle treatment for me. I am generally doing much better now than I was before treatment (the exception being I lost a little hearing over a two-octave range since treatment). CK gave me my life back.

You don't need to take Ativan before each treatment  if you don't want to, but hearing your concerns, I highly recommend that you do. It won't make you drowsy for long, if at all. The required steroids (which are also taken only before each treatment) will keep you energized after the Ativan wears off in the first couple hours.

For more information on what to expect when getting CK at Stanford, click on the link to this thread I started:
http://anausa.org/forum/index.php?topic=6910.0

The first half of my post gives general technical details about CK, but towards the end I go into the actual experience I had and offer helpful tips to those about to undergo treatment. I hope they help you, Laleh. In any case... Stanford + Dr. Chang = the deluxe CK treatment. You are in such good hands. You will sail through treatment . You are on your way to recovery and a healthier life.

Best wishes,
TW