Having CK starting tomorrow

[DebbieL]

Hi,

I started posting the other day and was told this is the best place to start so everyone will know what my plan is.  I have know about my AN for several years and was told a year ago about this site but only read everyone's story not knowing how to start and get around in the site.  My tumor (right side) is 9mm x 9mm x 7mm.  I had an MRI after going to my doctor because of terrible ear aches and head aches.  She couldn't find anything and after about 4 times of going to her she finally sent me to an ENT who also couldn't find anything.  They finally ordered an MRI and found my little surprise.  I did lots of research and became my own advocate when Kaiser wanted me to see a doctor who dealt mainly with back tumors but could do brain also.  That really threw me for a loop and decided to begin researching and found that Kaiser in Redwood City was the best place to go for brain tumors as most of the doctors there came from Stanford.  I waited and watched until recently when I decided it was time.  My hearing has declided some and I have also had some balance issues.  Recently I have developed a hard time swallowing.  That comes and goes.  Has anyone else had that problem.  My primary doctor sent me in for a scope to see if there was anything there and of course there wasn't.  I think he thinks it's all in my head (ha).  My neurologist is on vacation but said to come into see her when I get back.  Has anyone else had a problem with swallowing where your food or drink gets part way down and then just gets stuck.  I've had several episodes lately where it has scared by 16 year old. 

I go into Stanford tomorrow to begin my 3 days of radiation.  I have to admit I'm a bit nervous but hoping and praying for a good outcome.  My sister from Seattle has come down to go with me and make it a little mini vacation since we rarely see each other.

I am so happy that I have found great people (all of you here) who understand what I am going through.  Not everyone does as you all know.

Wish me luck!!
Debbie

[leapyrtwins]

Debbie -

may I be the first of many to say "GOOD LUCK". 

I hope all goes as planned tomorrow and the next 2 days as well.  You're in my prayers.

Enjoy your time with your sister 

Please let us know how everything turns out.

Jan

[mindyandy]

Debbie- We are here holding your hand!!!! You'll do GREAT!!!! I am 6 months post CK. Please keep us posted on how your sessions go.

[Jim Scott]

Hi and welcome, Debbie:

Although I'm sorry you have to deal with an AN, I'm pleased you found this site and have decided to share your AN situation with us.  I know swallowing difficulty can be a symptom but yours sounds more severe than most.  I trust your radiation treatment will be both uneventful and successful.  Many folks will be sending good vibes your way and praying for you.  Please let us know how you do because we care and want to support you in any way we can.  Thanks for posting.

Jim

[MAlegant]

Good luck Debbie.  I hope the GK works well for you and that your tumor dies quickly. Keep a positive attitude and make jokes whenever possible.

 Best wishes, Marci

[Debbi]

Hi Debbie - Frist,let me add my good luck wishes for your CK treatments this week.  Let us know how you do!

Now, about the swallowing.  I haven't read anything here that suggests that this is a common AN symptom, but maybe someone else can comment.  I can say, however, that my sister in law has long suffered from the condition you describe and periodically goes in to have her esophagus "stretched".  If this symptom persists, please push your doctors to find out the root cause.  It may be something relatively simple, like acid reflux.  Whatever it is, though, you'll want to get some relief from it.

Best of luck this week Debbie.

Debbi

[sgerrard]

Best wishes, Debbie. Say Hi to Larry and Eileen for me. By the time you read this, it will be 1 down, 2 to go. Enjoy your mini-vacation too.

Steve

[cindyj]

Hope things went well today, Debbie, and the same for the next 2 days!  Let us know how you're doing when you feel up to it.

Cindy

[cmp]

Hope your treatment today went well, Debbie, and best of luck with the 2 to come! Do post when you can and let us know how you're doing.

I have some swallowing difficulty, not from the AN itself but from the facial-tongue nerve graft I had afterward, in 1989 (to help with facial reanimation). I have to be careful, especially when I'm tired and/or when swallowing pills, or things will get stuck at the very top of the right side of my throat (where the tongue nerve isn't fully functional). Sometimes I can gulp glasses upon glasses of water and not get the bite of food or pill to budge; the thing that usually helps me is very carefully swallowing something solid to dislodge the stuck lump. This doesn't sound quite like what you describe, though--I do hope your neurologist can shed some light on your problem!

Best wishes--
Carrie