Facial Pain

[linnilue]

Has anyone experienced facial redness and pain which seems to be coming from the muscle above the jawline?  Also I have been experienceing muscle twitching in and around my Left eye for several days.  I have also had quite a bit of nausea again this week (which my cardinal symptom) two years ago.  Tinnitus this week is wretched.  I think this tumor is up to something.  As my profile shows, I am 2+ years post linac, but my outcome hasn't been great.  I'm thinking that maybe I should just pass this by the docs on Monday.  But it would be interesting to know if any of you post-radiation patients have experienced this at such a long way out.  Thanx...   

[ppearl214]

hi nik

I am one year post CK and have not run into what you describe.  How did your appt go on Monday?

Phyl

[marystro]

I am 7 month post CK.  I have some twitching above my AN eye and some facial pains.  They have all gone away after a day or two.  According to my doctors, they have seen these symptoms in their CK patients.  I read somewhere that these post CK effects may last for 2 year...

Have you been getting MRI every 6 months?  What did the doctors say about these symptoms?

Mary

[Dealy]

I am coming up on almost 9 months post Linac also. FSR over 25 sessions. Do not have symptoms you describe. However-have twitching of the opposite side eye alot-AN side once in awhile-terrible burning sensation on the AN side- increased numbness in throat and mouth- balance problems- and ear feels like it has 3 socks stuffed in it. Had an MRI this MOnday the 19th. Prelim report indicated growth and edema or swelling. Still waiting for official word form hospital where I got radiation from. Found out yesterday that place that did my MRI did not send out my CD till Wednesday afternoon-regular mail-so that is the holdup. I will post results under radiosurrgery thread when I recieve results. I am hoping this is from swelling and not actual growth. I have read where swelling can occur up too 2 years out-couldthis be the case in your situation. Keep us posted on your progress or outcome. Thanks-Ron

[marystro]

I think it all depends on the size and location of the AN...  Symptoms vary.

[linnilue]

Thank you all for your personal interest.  It is greatly appreciated.  I have felt very alone in this nightmare for more than two years and it is wonderful to know that I have a place to go for almost immediate info and response.  What a sense of relief this forum is, honestly.   It's nice to know that others are looking out for you.  And I thank all of you for that.  I spoke with my radiooncologist on Monday and he said that if the symptoms don't get better then he would do an MRI but that most likely the tumor is shrinking and of course can be problematic.  The other problem that I have, which I have said before, is that I have damage from the radiation and this could be part of that problem.  I did get good news from the cariologist (yes, I developed labile hypertension at the same time I had radiation) and now my stress test is 100% as apposed to last year at 80%, a failed test at that point.  I have been able to gain 10 pounds which the doc is very happy about.  So, despite the twitching, which isn't as bad tonight as it has been, it's a wait and see situation.  Yes, I get MRI's eveery 6 months and have actually had more than that because of all the bizaare neuro symptoms I experienced and still do.  I'm "do" in July baring any new symptoms which would require one asap.  Next Friday, we are going to florida for 3 weeks.  It should be an interesting visit because I became very heat intolerent an quite ill in the heat with this tumor (most likely it is humidity.)  I want to see how far I have come since being there last april.  At that time I was so ill and could barely walk without assistance.  My life has greatly changed (for the good) over this past winter so I hope I can tolerate the sun.  We have had a wretched winter here in Vermont.   For Ron, I too feel like I have rocks in my ear and sometimes a knife, balance is getting better, after 2 years.  Will keep you all posted and let you know how Florida sun works out.  I am reminded that jsut before I was diagnosed we were in Florida and I felt deathly ill, it was so hot and I jsut felt so sick but couldn't describe it very well but was diagnosed shortly thereafter with the AN..just an interesting piece for all of you to ponder.  Have any of you felt sick in the heat?   

[Windsong]

Hi Nikynu,

I can sympathize with what you have shared here. You asked about heat intolerance. yes, I have that. In fact now that I look back a few yrs prior to my own diagnosis there was this one time in the summer when i was outside and on my way back inside and ended up on the grass from the heat. I was bewildered as i used to be a sun lover (though on that day i was out barely 5 minutes.) I'd say that my comfort range is 20-25 c. now...

I too had Linac and am about a yr and a half post treatment. i remember having some twitches around my eye after and some of the rest of the things you mentioned. I have an mri coming now very soon to see what's happening. Some of it could be the rads i have been told and some might be this sinus infection I have, plus the change in hearing in my good ear is being checked out. I was surprsied at that and also the nausea that i get now along with other strange symptoms. An autoimmune factor may be mixed into this or even a type of menieres. We'll see.

Best wishes and hope you enjoy florida!

Windsong

PS. I'd like to think it's the An shrinking and making my brain cells work overtime getting rid of the "dead" parts lol.