increasing facial numbness 1 yr after radiosurgery

[mattsmum]

i had radiosurgery a year ago yesterday. i am not a good advert - had loads of problems since - and my latest change is worsening facial numbness. i did have facial numbness before treatment; around, behind and in front of my ear. it has extended forward and now reaches the middle of my chin, and includes my lower jaw, inside of my cheek and half of my tongue. i have had trigeminal neuralgia since treatment but thankfully that has improved heaps some time ago.
i have been trying to get an appointment with my ent for awhile (uk nhs) - anyone else have anything similar? and did it go away?

vikki

[Jim Scott]

Vikki ~

I'm sorry to learn of your post-radiation problems.  I'm not a doctor but I would venture a guess that some of your issues may be due to the radiated tumor swelling, which is natural (but still unpleasant).  If that is the case, the symptoms will abate.  However, you do need to consult with a physician, if for no other reason than your peace of mind.  I wish you well as you grapple with the NHS.   

Jim

[JLR]

Hi Vikki, I am 6 months post CK and at this point the numbness started. Just on the right side. Starts at the right hand side of my head, and the cheek, and the weirdest is the mouth. Just the right side. So putting lipstick on prior to this was so easy - no mirror needed....now I must use a mirror..its also difficult to apply lipliner and I have to be oh so careful and now my chin  - just the right side of it, is numb. Somedays it feels like a novacaine wearing off, other days it feels like I have a fat lip. My tongue is not numb but does feel weird at times.  Went to doctor, had MRI and at this 6 month point, the tumor has swelled some, but there is black in the tumor indicating necrosis..so the radiation is certainly working..but as it does its job, it causes a bit of problems.  I went on a short dose of steriods, which I thought had worked, but I'm still numb.  The tinnitus is so much louder..BUT this should all straighten out in time ( I hope) Regards, Joan  (The great thing about this site we are on is that so many of us can relate to the ups and downs of radiation. And just knowing that we are not the only ones with numbness or anything else related to CK or GK or Surgery is somewhat comforting.)

[mattsmum]

jim and joan - thanks for the replies.
it is helpful to know that i am not the only one with this symptom, while i wait for an appointment to see my ent!
it does vary a bit from day to day - as you describe joan - some days it makes it harder to talk clearly as my lips and tongue don't seem to quite know what they are doing!  but i don't think i would have ever been able to apply lippy without  mirror though; LOL!
thanks again,

vikki

[leapyrtwins]

Side-effects from radiation can take 12-18 months to surface.

Wise to check in with your doctor, though.

Jan

[mk]

The trigeminal nerve can be quite finicky. As everyone else said, your increase in numbness could be due to tumor swelling. Or due to the nerve being irritated because of the radiation. In any case this is the time frame where these problems show up. If you have a recent MRI, your doctor should be able to tell if it is because of swelling. In this case steroids could help. I would certainly ask the doctor.

Marianna