2-1/2 months since CK

[marystro]

It's been 2-1/2 months since CK.  I think the radiosurgery is taking its effect because I am experiencing small intermittent nerve facial pain on my tooth and below my nose in addition to higher tinnitus.  I asked Dr. Chang at Stanford about this and he reassured me with the following which I think may help some of us:

"After radiosurgical treatment, as the tumor undergoes inflammation and dies, the trigeminal nerve may also be irritated resulting in occasional pain.  In the case of the intermittent facial pain resulting from tumor inflammation, that usually settles down once the tumor dies completely from the radiosurgical treatment.  I have had occasional patients developed the more milder form of intermittent facial pain but this is typically been self-limiting and usually resolves over time."

Since these side effects are tolerable and only happen intermittently, I am opting not to ask for any medication.

I am very pleased with my health care team from Stanford.  They are truly responsive, caring and top-notch in my book!!

Mary

[flier58]

Hi Mary,
As you can imagine I follow your posts.  I am very encouraged and hopefull every time I see them.  I truly that all of this is transient and a sign of beautiful outcome.    I am hoping for the same for me
Sincerely
Flier58

[mellowrama]

Hi Mary,

Thanks for the update and the additional info.  I've been wondering about what to expect, or not expect.   

Although the ck went great, occasionaly I have sensations I'm unsure of, if its the AN...what does it mean...ect.  For me, I've experienced more dizzyness (which was not bad before) and sometimes a feeling that almost hurts in my jawline area, but its so faint and quick sometimes I wonder if I'm imagining it!  And fatigued a bit too.

I'm with you on the medication - I really don't want to take anything and if I do its tylenol or aspirin.
Please keep us on how you're doing!
melinda

[marystro]

Hi Flyer and Melinda,

I am glad we are sharing our experience.  I also find communicating with my doctors helps calm me down and reduces the anxiety.

I too have some strange feelings and fatigue like you, Melinda.  I think it is quite normal that the body is reacting to radiation treatment.  As long as it is mild, manageable and temporary, it's a small price to pay from not having my head cut open  .

Let's all stay in touch through this journey.

Mary

[BevM]

Hi Mary:  I just completed my CK treatments at Stanford and my experience has been great.

I appreciate your posts to see what I might expect in the next few months.  I have only good things to say about the Stanford team and my experience with the treatments.

Hope you continue to do well and that you will keep us posted on your progress.

Bev

[mellowrama]

That would explain the sensations I've been having, which are more than the symptoms I had prior to ck 3 weeks ago...,I'm getting a lot of twiching on my AN side, around the eye and lip.  Also, my jaw area is aching...So, I'm going to assume this is good new per Dr. Chang's feedback 

Mary - how long after your ck treatment before you noticed any differences?

thanks, melinda

[windinthesails]

Hi Mary,
   I am still not quite sure what Cyberknife(CK) really is and was wondering if you could please explain it to me? I appreciate it. BTW my name is Mary too !
              Thanks!

[marystro]

My additional intermittent symptoms all started about 2 months after CK:

1. Tooth and below my nose nerve ache - they lasted for a few days and I have not had these pains for almost 1 week now
2. Tinnitus - higher and I notice it more but it's tolerable
3. Facial numbness - much less to almost unnoticeable now

When I sleep I do not notice any of these symptoms.

Symptoms prior to CK - Slight tinnitus and for about 1 week right before CK some intermittent nerve pain in my nose which stopped the weekend before my treatment.

So far, I am very pleased with my results.  I think everyone's side effects may be different.  My way of dealing with these is to keep thinking positively and keeping my doctors advised and getting their opinions for reassurance.  I will keep you all posted on my progress.

Mary - To find out more about Cyberknife, there is a Cyberknife link below and many posts in this forum as well.  http://www.cyberknifesupport.org/forum/default.aspx

Mary

[ppearl214]

Martystro, do you know how proud I am of you?  You don't? 

I AM SO PROUD OF YOU![/b]

'nuff said!

xo
Phyl

[marystro]

Thank you for the compliment!

I am just following the foot steps of my HEROES - you, Mark, Capt Deb, Melinda, Sue, and numerous others!!

Do you know how much difference you all made for us ANers?  We couldn't have lived through this without all of you!!!

Mary

[flier58]

Hello everybody,
Well, for me I need to add to this list You -Marystro, Shoegirl, and Mellowrama.  I always feel better after I see your posts.
regards,
Flier58

[ppearl214]

..and thus, why we are all here!

xoxoxo and all that good stuff