Getting ready for CK

[shoegirl]

Hi!

I am getting ready for CK, scheduled at Barrow's Dec. 12th-14th (they may add two more days after results of CT & MRI).  Going for my mask fitting this week and CT/MRI early next week.  Does anyone have any pre-CK advice for me?  I know there are not many side effects of CK but any suggestions would be greatly appreciated.  Hoping for maxium shrinkage! 

Thanks! Suzanne

[CC]

Hey shoegirl

Good luck with your treatment.  Just a couple of tips: don't wear make up or have your hair all nice when you go in for the mask fitting.  First, you have a personalised head mould made to lie on and then the mask itself is dipped in warm water before being fitted.  So you're going to end up one damp mess!  It's totally painless and the warm mask drying is ok too. 

One last tip, Stanford gave me a CT scan with iodine contrast before my treatment.  Not sure what they told you but they said they could adjust the CT machine to take smaller slices of pictures resulting in a more accurate picture of size and location overall.  More accurate - the MRI showed my An as 1.8cm, the CT as 2.8!   Certainly a difference for the placement of the radiation.  Anyway if you have this done they will insert an IV with iodine contrast.  (If you're allergic to shellfish they can't do this.)  When they put the contrast in you'll feel warm and tingly all over I didn't but everyone I've talked to since has). 

Now here's where the tip lies - they won't let you leave until you've drunk at least 9 or 10 glasses of water.  They hadn't told me this!  I'd fasted like they told me and drunk several glasses of water before the treatment.  And so it was hilarious while myself and another girl rushed backwards and forwards to the ladies room until we'd consumed all the water!  So check otu where the bathrooms are before you go in.

Good luck.  My prayers are with you.  Keep in touch

CC

[CC]

Oops one more tip - take along some music to listen to during your CK treatment.  You have to lie with your eyes closed for about 45 mins each time so music is great listen to.  I took along my ipod and a cable to plug into their stereo.  It certainly beat listening to their smooth jazz or soft classical stuff! 

CC

[shoegirl]

CC,

Thanks for all the tips! I didn't ask if they are going to do contrast with the CT?  Good Question, I'll have to find out - I would be very interested to see if my AN measures the same the second time around. My last MRI w/contrast was in Oct. 

The ipod is a good idea!  I hope you are feeling well after your CK.  Did you experience any hair loss?  I know Jamie had some and was just curious if you had any?  I know it is rare - not too worried about it - I am willing to pay the price - could be alot worse.

Thanks again for the advice! 
Best Wishes! Suzanne 

[CC]

No I've had no hair loss at all - no headaches either - just a heap of fatigue.  But that's a small price to pay to not having your head cut open!  I'm confident the fatigue will go soon.

Good luck and keep in touch
CC

[Larry]

Suzanne,

I had a 2cm an removed using middle fossia technique 3 years ago and was recently diagnosed with it returning. I have just got my mri  results after having it regrown 6 mths ago. My results are that it hasn't changed in 6 mths. My ent surgeon has told me to do nothing. In fact, he will no longer do middle fossa ops - only translab. However, the real important info was that he won't operate on a small an any more. current research in Europe using 12 years of MRI experience, identifies that a small an may in fact stay a small an. Furthermore, it may have been small for many years already. I was all geared up for CK treatment regardless of whether my an has grown or not and now I am going to wait. my current an is 19mm.

In fairness, i did query radiation treatment and my dr said that it is an option and there are plusses and minuses for both surgery and radiation. But he said that i don't have to do anything so I won't. I now regret almost panicking when i found out to have the op asap. Hindsight is a wonderful thing.

Maybe you should question your doctor's a little more before jumping in. My dr regrets using middle fossa. Anyway, everyone is different and it depends if your an is pressing into your brain stem or not.


regards



Larry

[shoegirl]

Larry,

I wish that I felt that I had more time, but my AN has grown significantly.  If I wait then I am risking a situation where I may not be able to have radiation as an option.  I have seen 5 doctors - all have told me to have this treated and not to wait and watch due to location and due to the amount of growth over the last 3 years.  I am seeing one more dr. later this week and will be interested to hear his opinion.

I was told by a neurosurgeon yesterday that if I go the surgery route that I will definitely lose all of my hearing in my AN ear due to the location of the tumor.  This confirms for me that treatment now is the best option because with CK I could still save some of my hearing (which is good now). 

I can only hope that I am making the best decision and then keep my fingers crossed.  I have alot of faith in my CK doctors. 

Thanks for your advice, I wish you all the best! 

Suzanne

 

[CC]

Suzanne

Forgot to say my AN was not insubstantial (2.8cm at the final measurement) and abutted the brainstem.  I'm sure you've had some of the same qorries as I have - what if it swells?  what if it grows? etc.  And there's that "I don't want to lose me hearing" point too.  I have to tell you that since the CK amazingly my tinnitus has disappeared (or at least I only hear it when I'm really really tired - last thing before I go to sleep) and as a result my hearing has actually improved.  They tell me this is rare but I'm so happy I didn't go the microsurgery route because I'd be deaf in that ear now instead of being able to hear the dripping of a tap I left on downstairs when I woke up in the middle of the night

Good luck

Hey Larry how are things going with your research?

[Larry]

Suzanne,

Decisions that involve the removal of an AN is pretty mind blowing and now that you have made yours, thats great. Just feel confident about it and go for it. I'm sure it will go well.

Larry

[Larry]

Cathy,

I'm really pleased that your treatment has worked well. Yours and others having successful radiotherapy certainly swayed me towards this kind of treatment rather than translab. As well as this poster being a support group it is also a funnel for information that people can digest. We don't have to agree with it but thats fine, just move on. I personally have found this site terrific as it gave me a comprehensive understanding of treatment options that no doctor would give out in isolation. From that perspective its been a huge boost to me.

My MRI results were pretty positive in that my tumour hasn't grown in 6 mths and the ENT surgeon suggested that i do nothing for at least 12 months. Even a substantial growth spurt wouldn't affect having either radiation or surgery so I thought it best to wait at this stage. I'll drop you an email on the full details.


Larry


Larry

[wind6]

Just wanted to say its great to see you are nearing the treatment phase. I had surgery so I cant tell you how to prepare or how it will be for you but, I can tell you to try and keep joy in your everyday life and take special care of you. You do deserve that. I will be watching for an update. Best of luck to you Suzanne.          Sherry