Cyberknife Journey

[marystro]

Shooting pain that traverse up my nose in my case.  It only happens when I move my mouth muscle in a certain way and it does not always happen.  I think someone calls it "electric shock".  It only lasts for a second or so each time.  I am hoping it's the trigeminal nerve being irritated when my muscle is pulled.

Mary

[marystro]

It's not consistently happening.  Very transitory.  I did not have them for 2 days and then they came back again today.  May be it's stress related also.

[Windsong]

Uh well, I am not a big believer in "stress" being an "answer" especially if one is dealing with weird things going on in one's body that were not there before whatever all of a sudden brought them to your attention................like an An.

[marystro]

Same here.  Definitely not stress related but can't figure out what trigger them.  They are now gone after hanging around for 30 minutes.

[Windsong]

Well dunno, but i do read thread titles and end up readiing all sorts of things lol.... so, how is everyone on this thread?  hope all are doing really well....

Windsong

[BevM]

I have been reading all of your experiences with great interest as my neurotolgist at Kaiser is recommending watch and wait. She believes this is the best approach and to repeat the MRI in 6 mos.  The AN is 9.5mm but is causing many of the symtoms you are all experiencing which seem to be extreme for the size. I am waiting to see the surgeon and in the meantime have been looking into treatment of the various symtoms. Neurotologist is referring me to a Tinnitus specialist and back to my GP for a TMJ referral (apparently Kaiser has a good specialist).  I am going to PT for the imbalance and head/ neck pain.  I also experience the sharp pain up the side of the face, nose sinus that is transitory and none of the docs can explain.  I am hoping to get a referral to Stanford once I see the Kaiser surgeon in Redwood City.  I have decided to see an acupunturist that is highly recommend by several friends to see if she can help with the symtoms including the pressure and pain in the ear that changes in intensity from day to day.  Any one had acupunture for relief of symtoms?

Bev

[DistressedDB]

Bev,

I haven't had accupuncture, but I know many that have used it for other symptoms...I think its a worthwhile option and I would be very interested to hear how you make out.  I'm a big believer in alternative "medicines" - my son has Chron's disease and it's much of the alternative things we have tried that have made a difference.  Accupunture was one I wanted him to try...he drew the line at being a pin cushion (he's afraid of needles).

Let us know if you try it and how it works out...

[marystro]

Hi Bev,

Sorry to hear about the symptoms you have.  You should definitely check out Stanford if possible.  My mom had back pain and leg pain in the past.  She tried many conventional doctors and finally what cured her was accupuncture.  I am not sure if it will be the case for you but certainly look into it in the meantime for relief.  My understanding about AN is that symptoms are not size related.  My AN is 2.3 cm (although Dr Chang at Stanford said it's 2cm AN?) and my symptoms are still relatively mild comparing to many that I have read.  I am just hoping once treatment is completed this coming week, I should be on the way to recovery or at least stablized.

One thing you should consider before any surgery decision is to check out Cyberknife and other radiation options.  Wait and watch is fine as long as your symptoms are not getting worse and impact your quality of life and that the tumor size is not alarming.  From what you described, I would do something about it since it seems to be concerning.

Best wishes,
Mary

[teasely]

Hi Mary.  Just wanted to chime in here as I had CK with Drs. Chang and Soltys in March.  You are in very good hands at Stanford, and I think you'll find the whole experience much less unpleasant than you might think.  I had a few symptoms that were treated with a course of Decadron, but overall I can't complain too much.  We'll see how everything is shaping up in September when I have my 6 month MRI and hearing test. 

Good luck,

Kristina

P.S. sent you a private message

[marystro]

Hi Teasely,

Just replied to your private message.  Thanks and am glad that you are doing fine.  I think I will be also.

To recap my experience so far:

Day 1 - CT scan

Probably the only process that I felt a little pain when I got the needle of the IV for CT.  Even that was so minute.  The face mask was kind of fun - warm in the beginning and tightened up when it was cool down.  The entire process took about 45 minutes.  Most of the remaining 2 hours was just waiting around to see if I needed another MRI which fortunately in my case my 1-month ago's MRI sufficed.   The worst part was having to drink 8 glasses of water to flush the CT contrast.

Day 2 - 1st Treatment

It's only been 2-1/2 hours since treatment (1st dose).  I do not feel any side effect as yet.  So far, it has been the best medical experience I ever had.  Correction - I did not even feel like I just had a medical treatment at all.  Actually as Larry the person who fit my face mask said, "it feels like you are in a hair salon!"  Dr. Sakamoto on the treatment team gave me a tiny purple steriod pill for possible swelling which I took right after the treatment.  It took only 30 minutes for the entire process.  I was mostly just lying on the table with my face mask on listening to a CD that Alex (my 8 year old) gave me.

I came back to the Marriott Residence Inn for BBQ night with John (husband) and Alex.  So far so good and I do not feel any different.  I think it is pretty cool for "brain surgery".  Dr. Chang and Dr. Soltys are really really nice and accommodating.  Dr. Chang even changed the treatment schedule to earlier today based on John's request so that Alex can do his evening activities.  Dr. Soltys is so sweet that he can be my favorite little brother anytime.  I will recommend the Stanford team (Dr. Chang and Dr. Soltys) and CK to anyone with a heart beat!!

Mary

P.S. We met other patients yesterday and today at the CK Center that have more serious ailments (cancer).  It made me feel like my AN is minor relatively.

[marystro]

I am glad to report that the last 2 days went extremely well.  Thanks to all your positive thoughts and great support through this life little challenge (only 2.2cm in size)!  You are the BEST !!!

No side effects so far.  It took 30 minutes each day.  I listened to classical music the last day since I did not like John’s 70s music the day before. They took Alex around to show him the computer monitors and the treatment room.  He was most impressed by the Linear Accelerator that delivers the x-ray as he was all “wowedâ€? by the amazing “Star Warsâ€? like environment.  I brought the soft mesh mask back for Halloween costume ;-).

According to Dr. Soltys, the radiation oncologist, re-growth is 1% chance which they can take care of by surgery if necessary.  In their history they only have 2 or 3 regrowths out of hundreds of AN treatments.  Tumor cell DNA is being destroyed by the radiation while the normal tissues are spared.  I guess I will have dead tumor in my head which I can use for all kinds of excuses now  .  No medication unless I experience side effects.  6 months later I will have to do another MRI and audiogram for follow up visit.

And Mark, we made reservations for the California Cafe tonight!

Mary
much happier and relieved!

[Mark]

Mary,

great to hear your CK experience at Stanford has gone so smoothly!   .

Thanks for carrrying on the tradition of the post treatment celebration at the California Cafe tonight. I'll be sure to break open a good bottle from the cellar tonight and toast your success 

Mark

[mellowrama]

Hey Mary and all!

I'm so glad to hear your experience with the ck treatment and Stanford is going so well!  I've often thougth about you and wondered how you're doing.  I too have been traveling, so I havn't caught up with you till now.  Are you now finished with the treatments?  Do you feel any different with your sypmtoms?  As you may recall, I'm still waiting treatment, with very similair AN / symptoms....I visited Dr.'s in the OKC area (Sandy's town ;-)) and was pleased with the overall experience.  So, I've yet to decide where, but sure I will get CK very soon.  Please keep us up to date with your results!

 
Melinda

[marystro]

Hi Melinda,

Yes, my treatment was completed today - 3 days, 30 minutes each, total 18Gy.  Very simple process.  The only difference in the symptoms front was the facial sensations and shooting pain are gone for the last 2 days (I don't know if it's due to CK since it is so soon or other reasons), a tiny little more hissing sound which followed after treatment for a little while but got back to the way it was before (almost unnoticeable) after a good night sleep.  I will see if today's hissing also behave the same tomorrow morning.  Other than that I feel great!  Dr. Soltys, the radiation oncologist, did say about 20% of patients may have some side effects but should only be transient.  He was also honest to say that regrowth probability is about 1% since there is no guarantee in medicine.  I really appreciate their professionalism and integrity.

Biggest lessons learned: we need to manage treatment decision and plan based on our own research, our symptoms/conditions, our preferences and unbiased professional opinions.  What works for one situation may not work for another.

Mary

[marystro]

It's been 4 days since last day of CK treatment (last Friday).  Only slight side effects I had was a little headache for a few hours and a little louder hissing sound which is almost unnoticeable.  I slept on Saturday and Sunday night for a long time (probably 10 - 12 hours).  I feel great today and even went into the office although I was told by everyone that I should take it easy  .  I hope the good results keep up.

Does anyone know if side effects after CK (if any) usually start immediately or will take a few weeks/months?

Mary