Scheduled for CK !

[mellowrama]

Hello All,

I'm finally scheduled for ck the week of the 25th!  I had to make another trip to Barrows (from NM) to see an neuro-otology doc, which was Dr. Daspit.  He was great!  Very personable and direct, and he made the team complete, with Dr. Kris Smith and Dr Brackman too.  I feel really good about my decision now.

While I was there I also had another MRI and a CT Scan for the procedure, oh, and a mask made too.  Just for those of you that don't know, it was a breeze.

Thanks for all your support and feedback, I don't know what I would've done without ya'll!   
Melinda

PS.  I'll keep ya posted on the outcome.

[SuzeAN]

I am a patient of Dr Daspit also, I really like and trust him!  I will be coming up on my 1 year anniversary for CK, so I will be having the yearly MRI.  Dr Daspit was very happy with the 6mos. MRI's.  Good luck to you and do keep us posted, one thing I can recommend is bringing a CD (either music or audio book) and just try to relax while you are in there with the mask.  I felt a little nausea and tired after the first but it wasn't so bad, it was probaly more from being nervous, the 2nd and 3rd day were fine since I knew what to expect. 

Cheers,
Sue (Las Vegas)

[shoegirl]

Mellowrama,

Good luck!  You are going to do just great!  If you get nauseated  or anxious asks for some meds.  Don't bother with your make up or hair!  Wear some comfy clothes.  And relax.  It will be over before you know it!

[mellowrama]

Hi,

Thanks for your feedback!  Did you get a tranquilizer or anything before treatment?  I'm planning on driving home (riding) the last day which is an 8 hour drive...will that be ok?

melinda

[ppearl214]

Hi Melinda

YAY YOU!

I had an Atavan (oh, known around here as the "happy pill" and I have to say, I slept for the most part through my treatments (I had a 5-day/dose).   Got to bring my music each day (now, granted, it was the week before Easter, so I brought... Chipmunks Christmas, U2, Elton John and yes, even .... yANni!)  You feel nothing, you hear a slight humming when the robot arm moves around and you truly will see just how easy it is.  Knowing Barrows, they will make you feel so so comfortable, it will be a breeze! I think all CK posties (post-treatment) will attest to that!

Fatigue does set in, mostly from initial stress/anxiety.  Atavan also will make you a little drowsy. Do you have someone to drive with you?  That would be my suggestion.

Phyl

[SuzeAN]

Hi Melinda,

I drove all over Phoenix and Scottdale while I was there for treatment, but I would suggest you have someone else drive the 8hrs, I know I was really tired after the treatment. 

Good luck,
Sue (LV)

[marystro]

Hi Melinda,

I have not talked to you for a while.  I am so happy you made a decison and even with a date!

The treatment will be a breeze.  My anxiety was more the problem than anything else.  I did not drive as I was not sure what my reaction would be.  But I could have everyday.  I was so nervous the first day that I had my eyes shut the whole time.  But I did not feel anything at all through the process.  Music is good and relaxing and make the time go by faster.  The first night I did not sleep well but that was because my husband was snoring ;-).  The 2nd and 3rd nights, I had great rest.  You may find yourself wanting to sleep a little longer due to fatigue that I believe was set in from my anxiety more than anything else.  I smelled some small funny burning smell which a fellow CK patient told me it was the burning of the Linac Accelerator when radiation was shot out.  Other than that I felt really great and even full of energy.  I think may be because I knew the treatment was over.

You will do just fine!   

[shoegirl]

Melinda,

I would ask Dr. Daspit's office or your Radiation Oncologist to prescribe some Ativan for you, so you have it ahead of time.   You may not need it, but atleast you will already have it in hand.  I would definitely have someone else drive you back home.  Everyone is different - you may feel just fine.  I had nausea and some vomiting.  I was tired too.  But many others are fine.  One gal, CC, I think - if I remember correctly - went hiking afterwards!  So you never know! 

If you need anything while you are in town, don't hesitate to ask! 

 

[mellowrama]

Ok, yes I think I'll ask for the ativan...and I'll have a driver so I feel set!  Thanks for the offer shoegirl...I'll let you know.
I plan on see the Heard Museum, Art Museum and some shopping!

And thank Mary, for the notion about the burning smell...now I won't worry.  It's good to hear from you.

And I'll be sure to take some of my favorite "relaxation music"....for me probably cat stevens not the chipmunks!  ha!

I was telling my buddy about some of the great feedback here, she said maybe we get AN's because of our higher intelligence 

thanks, melinda

[ppearl214]

no chipmunk Christmas?    Well, I DO have Elvis Christmas if you want to borrow it?

Ativan... yep, if it helps, the first day, then you will see just how easy it is and prolly won't need it the rest of the week (my hope, at least). I took it everyday but not for nerves (so they thought)... cuz I had to wake up so early every day to get into downtown Boston and beat traffic, I wanted to sleep... I slept right through my treatments.

[flier58]

Hi Mellowrama and Shoegirl and others who decided on CK,
I am trying to figure out which procedure I should go with that including microsurgery and radiation.  I have 2cm R AN just diagnosed.  AS crazy as the question sounds -  why did You decide on going with CK versus other options.  My decision changes every 30 mins depending on what procedure I am reading about.
So WHAT convinced you?
REgards,
Flier58

[marystro]

My preferences of treatment choice was based on the following factors:
1. Avoidance of surgery associated risks and pain if possible
2. Hearing preservation on my AN ear - they would have to sever the hearing nerve to get to the tumor
3. High success rate - CK has 98% success rate in tumor control

Since CK has high success rate of 98% tumor control (not removal and I am ok with that) and can preserve my hearing, it became a natural choice for me.  Then my decision was confirmed by my local neurosurgeon and my own comfort level gained through research, talking to the ANA and CK forums and CK treatment team at Stanford.

You need to decide what the factors are for you and make your decision after all your questions are answered to your satisfaction.  The decision making process was the most difficult period but once decision was made, I was much relaxed and less stressed.  So ask questions and best of luck!!

Mary

[okiesandy]

Melinda,

I think I must have had survivors euphoria when I finished the 3rd day. You know what I did. I was so glad to get it behind me. Now I have many pairs of shoes and I can't figure out why I bought them. Guess you can't have too many pairs of shoes.  I was higher than if I had taken drugs. That lasted for several days and then caught up with me. Also, I was on steroids because of AIED flair up. 

The first day I did take a little something to relax me. Day 2 and 3 I didn't. Remember, I did not have the mask. I sure worried about that. However, it seems to have worked out fine. Ivan the Terrible looks like he is going to tumor heaven. For something that was on my mind 24/7 before treatment I sure don't think about it every day now. Only stress a little before the next MRI. Next one is in January. The big 1 year event. Looks like you are going to make it and be in the Class of '06.

No burning smell for me either. I have heard others say they smelled that. By the way my tinnitus has been a lot less in the past week, it even goes away for 15 to 20 minutes at a time. Not as loud as before when it comes back. Facial numbness is about a thing of the past also.

Keep us informed.

Sandy

[mellowrama]

Hello Sandy and all!

Thanks for the feedback, I'm feeling better and better all the time about CK!  In fact, I can't wait to get it over with...then hopefully I won't be thinking about it so much.  I got a presciption of xanax so I think I'll be fine.

I'm leaving NM this friday, making a vacation out of the trip on the way...probably buy a lot of vintage boots for my store ;-)  Instead of shoes   Also, I'm going ot Canyon de Chelle and the town of Jerome (on the way to phenoix).  More reasons for looking forward to the trip.

Regarding the decision, I think Mary posted it well.  For me, the side effects and uncertainity with surgery ruled it out quick.  Ck seems like an easy button in comparision...and it seems to me that it depends on which doctor you ask for what they will tell you.  Between neursurgeons, ent surgeons, radiation oncologist I've seen 7 docs and differing opions from each.  I think for me the key was liking my docs as well as the team and hospital.

melinda

[marystro]

Melinda,

Stock up on those boots!!  Would love to stop by your store if I ever go to your neighborhood.  You will be fine next week.  Anxiety may make you tired.  Other than that it's a piece of cake.  Enjoy NM and go sightseeing.  We went to San Francisco when I was at Stanford.  It was a true mini-vacation for the family.  Even better than the 2-week vacation at DC and NYC we took immediate prior to the treatment.  Just relax and have some fun.  Don't forget to take pictures!!

Mary