Questions about post CK

[NE Farmwife]

I am planning on having CK at Stanford in a couple of weeks.  I haven't seen anyone ask or post about how long you have to continue to have MRI's after you have radiation.  I may not have looked far enough either but I hadn't seen any posts about it in what I have read so far.  Is there a point where you can quit having MRI's and the doctor knows positively that the tumor died?  After 5 years? 10 years? Or do you have to continue having them forever?

Also, some of you write about taking medications post CK for inflammation.  Does the radiation doctor give you prescriptions for this after you call them about your post CK problems?  Do any of you get your medications for post CK complications from your local doctor? Are your local doctors able to help you or do you always have to depend on the CK doctor?  If you get your prescriptions from the CK doctor, do you fill your prescriptions locally?  Do they just phone your local pharmacy?

I know that I still have lots of questions and I certainly appreciate all of your help.

[sgerrard]

MRI's after radiation treatment typically are every six months for a year or two, then annually for a while, then every two years for a while, then now and then after that. Actually even with surgery it is probably a good idea to keep having an MRI now and then, just to be sure. Regrowth can happen no matter what you do.

A prescription for steroids from a doctor can certainly be faxed to pretty much any pharmacy in the country, so I don't think that would be an issue. You could either phone the office at Stanford, or contact your local ENT if you have one. I expect it would be the medical assistant at Stanford that would handle it. Since I went out of state, I have maintained contact with my local ENT, and would probably go through him if I needed something.

Did you put your CK date on the AN calendar? (see below).

Steve

[Tisha]

Hi!

I'm planning on calling Stanford whenever I need steroids or anything to do with the procedure.  I have my neurotologist and ENT here, but probably won't use them for awhile with anything to do with the AN.

Steve,  I put my procedure on the calendar, what a neat feature. 

Tisha

[suboo73]

NE Farmwife,  Hi!  I am so glad you asked the questions about post CK.  I am concerned about any post-treatment needs as I was misdiagnosed for so long and do not have a local ENT i trust.  (Perhaps my PCP will give me the most support i need, and that would be fine.) 

Good luck with your CK treatment!  I am certainly considering this as an option, so i look forward to hearing from in the coming months. 
-------------------
Tisha - good luck with your treatment, too!  I will be anxious to hear how everything goes.


Sue

[Tisha]

Thanks Sue.  NE Farmwife and I are having our treatments the same week at the same place!  I'm getting anxious, nervous, excited, etc.   I'm also looking forward to going to San Francisco, visiting with relatives and sight-seeing.  It's the post-radiation time that I'm really frightened about...but nothing to do but wait and see.   I feel confident in my decision.  Also, did you know that Dr. Chang at Stanford is a neurosurgeon?  He does surgery and radiation, approx 50-50%.  I liked that because surgeons like to operation and radiologist like to radiate, and I think both will be more persuavsive towards their field of expertise.  Since Dr. Chang does both equally, and you don't seem to be heading one way or another in particular, it may be worth you while to send him your MRI and have him do a diagnosis.  He called me back 24 hours of looking at it and recommended CK.   How large is you AN?

Tisha

[suboo73]

Tisha,   I think it is 'kul' that you are going to be having treatments the same week in the same place with NE Farmwife!  I was just in SF last May and i am sure you will be able to see some sights and hopefully relax in between treatments .  (It was COLD and windy there in May!)

My AN is 9mm X 6mm X 5mm - i need to have a doc explain (again) the exact meaning of every word/phrase in the MRI report just so i am clear about my particular situation.  And yes, i am definitely considering a consult from Dr. Chang - just couldn't decide if should do that now or wait until 6 month follow-up MRI in April 09...  I most certainly do like that he does both surgery and radiation. 

Do you know if the doc can actually 'see' if the AN is hitting on a particular nerve, even if you don't have any symptons?  Gosh, i still have lots to learn.

I think you and NE Farmwife will do great!  Keep us posted.

Sue

[ppearl214]

Hi Farmwife,

Steve is correct in noting the (average) timeframes for having post-CK MRI's... please keep in mind that, also, as an AN patient, regardless of treatment options, part of our realities is also the long-term of having head MRI's. I am of the mindset that I have no issue having head MRI's for the rest of my life to make sure the original/treated AN is what is should be (post treatment) and that there are no others cropping up...

Many treating docs will prescripe steroids such as Decadron or Prednisone... some do, some don't. Yes, issues can arise a year or 2 down the road with post radiation swelling... not common, but can happen.

Either way, you are in fantastic hands at Stanford and sending you all wishes for wellness and boy oh boy, you are starting the new year with a road to wellness.... best wishes.

Phyl

[Tisha]

Sue,

They can see what nerve is being touched.  I have no facial issues whatsoever, and asked my local neurotologist who diagnosed me if it was touching my facial nerve and he said yes.  It's just that the facial nerve stretches easily, or easier than the hearing nerve.   Also, I think since all 3 nerves are right next to each other, it's very common for the AN to be touching all three.  I could be wrong, please correct me someone if I am.

Since you already got an opinion to watch and wait, you have no symptoms (or do you?), Dr. Change would probably just say the same thing.  I would probably wait to see if it grew before I sent an MRI, also.  Tisha

[DebbieL]

Hi Farmwife,

I had CK done at Stanford by Dr.Adler/Dr. Soltys 5 months ago.  The entire staff at Stanford were wonderful.  You're in good hands.  Be sure and take CDs to play during the treatments.   
The only problems I have added to my list that I didn't have before CK are horrible headaches usually 1 every week or so that puts me down.  I was told to contact my neurologist who has been great and very helpful.  I have Kaiser though so it might be different for you.  I have my first post CK MRI in a few weeks and have to say that I am getting very anxious to find out what's going on in my head.

Good luck with your CK.  Keep us posted on how things go.

Debbie L.

[Tumbleweed]

Sue,
 It's just that the facial nerve stretches easily, or easier than the hearing nerve.   Also, I think since all 3 nerves are right next to each other, it's very common for the AN to be touching all three.  I could be wrong, please correct me someone if I am.

To my knowledge, the facial nerve doesn't stretch any more easily than the hearing nerve, if by "easily" you mean "more readily." The facial nerve is more resilient than the hearing nerve, however, because it is a motor nerve and not a sensory nerve. That is, nerves that control motor functions send signals out from the brain to muscles and can take a lot of abuse (including being stretched) before they begin to malfunction. Sensory nerves like the hearing and balance nerves, on the other hand, respond to stimulus in the outside world and send electrical impulses inward to the brain; they are much more sensitive to being stretched or compressed.

This explains why, even though an AN can be touching all three nerves in the IAC (facial, balance/vestibular, and hearing nerves), relatively few people have facial paralysis or paresis as their first AN symptom. (To be completely accurate, the vestibular nerve actually has two branches, the superior and inferior vestibular nerve, which run side-by-side inside the IAC.)

Best wishes,
Tumbleweed

[Tumbleweed]

NE Farmwife and I are having our treatments the same week at the same place!  Tisha

You two gals might like to read the last few paragraphs of the beginning post here: http://anausa.org/forum/index.php?topic=6910.0

In it, I relate what my experience getting CK at Stanford was like and offer a few suggestions for those about to undergo CK there. I hope you find it helpful.

I wish you both a peaceful and positive experience in your treatments. Speaking as a Stanford Postie, I am confident everything will turn out okay.

Best wishes,
Tumbleweed

[Tisha]

Thanks for the explanation of the nerves, Tumbleweed.  I also am printing off the link you sent.  I will remember to ask for the anxiety pill 30 minutes before treatment.  All of these suggestions are wonderful.

Tisha

[Tisha]

Tumbleweed,

It's me again.  I've looked over your herbal anti-inflammatory mix of turmeric, etc.  Do you mix an equal amount of each?  You said to start with 1/3 teaspoon.  I'm guessing I just mix up whatever amount I buy in equal quantities, then just consume 1/3 teaspoon of the mixture?

Are you still doing that, and do you think it keeps the inflammation down?  Did you have any pre-inflammation symptoms before treatment?

Tisha

[NE Farmwife]

Tumbleweed:

Thanks for referring us to your post CK information thread.  I have printed it off and it looks like it is very helpful.  Did you bring your own valerian root (the herbal sedative) with you from home?

How are you feeling now?  Are you still feeling fatigued?  Have you had any other post CK complications?  Have you had to call Stanford for any type of medications or complications?

[suboo73]

Tumbleweed -  I have to chime in too, and say thank you for the CK information and the explanation about the different nerves!  This has all been so helpful and i appreciate the time you took to write it down for us newer newbies!

Tisha - thank you for your help in explaining things, too!  I have no other symptoms that i am aware of - some days feel clumsy, so we will see (or is that just my age? LOL!)  I chose  W & W myself i think because i was so shocked for it to be happening to me after learning the same thing about my sister -- just decided that if i have lived with it this long, then a few more months wouldn't matter....  However, after a visit for a 2nd opinion (and a reality check) i realized that now IS the time for the research, etc.  -- so that is why i am here.

I wish Tisha and NE Farmwife good things at Stanford!
Thanks again, Tumbleweed!

Take care all.
Sue