Did facial/tongue numbness or ear fullness change with radiation?

[arcteryx]

I was wondering how radiation affected those experiencing facial / tongue numbness or a feeling a fullness in the ear before the procedure? What and how did it change after radiation? Did it get worse and then better? What type of radiation did you receive?

Thanks!

[ppearl214]

Hi arcteryx

Great question.  As you may know, I'm only 2-1/2 mos post CK, but I have noticed a few things since my treatment.

My facial numbness, pre-treat, was limited to the right side of my face, from forehead down temple to just below eye.  Now, experiencing from both sides of face, from cheekbones down to jaw. Has been intermittent, but noticeable.  Example, last night was eating ear of corn... didn't even feel the corn on my face (1 or 2 niblets) until my friend pointed it out to me.

Never had the ear fullness pre-treat. Post treat, well, that's been a different story. I know the tumor is in swelling mode now since radiation was recent.  So, still experiencing the fullness and have noticed that the fullness and tinnitus enhances with bad weather front moving through (we certainly have had our share of weather/rain here in New England the past month) and allergies. Antihistimines have helped a bit to curb the fullness.

Had CK at Beth Israel Boston first week of April this year.

Not sure if any of this helps, but hope it does.

Phyl

[SuzeAN]

Hi,
I am almost 9 mos. post-CK and had some facial numbness near the ear area and that "earfullness" feeling, after CK the fullness feeling really only seems to be noticeable when allergies are acting up. I would say there wasn't much of a change with any numbness.

Cheers,
Suzan 

[Sue]

Hi
I had my GK on April 18, and the facial numbness is about the same, with it a little more pronounced around my mouth. The left side of my tongue still feels like it's been "burned" a little and the most of the inside of my mouth on the AN (left) side is affected also. I have more noticable sensations (I don't know what to call the nerve weirdness that goes on!) at the edges of the affected area...especially around my nose and mouth.  That comes and goes. And my nose gets very cold!  I have been lucky in that the "fullness" feeling which I had a roaring case of last year has subsided and not as prominent any more. The tinnitus is constant and I have a feeling it's just something I'm going to have to learn to live with. Time will tell if all the rest of it gets better. I sure hope so.  I am noticing every little change these days because I, like Phyl, am probably going into the stage that our AN's are swelling a little, and I am curious/hesitant as to what is coming next!  Last night my tinnitus changed and added a soft, ping, ping, ping, then the ping went away and it was back to it's constant hiss.   I told my husband that perhaps aliens were trying to communicate with me. And yesterday, I was shopping with my auntie, and I don't know how to explain that kind of wonky, spaced out (there are those aliens again!) walking around in a bubble kind of feeling.  It's like I am on some kind of drug, and I'm not....  I feel like I've been on some kind of psychedelic trip - whoo hoo...the return of the 60's baby.

[Windsong]

I had ear fullness sometimes prior to fsr. I also had some episodes after fsr, along with some numbness and  tingling on the left side of my face in my cheek,  some tingling around the mouth etc. but i haven't noticed much of that at all any more. I am going into my 8th month post-fsr and my An is stable i am told from my recent mri. Also, I didn't get any swelling, really, except for some during the 25 treatments. I had some weird noises added to my tinnitus after the fsr but they've mostly gone away too. In fact most things seem to have gone away but i do still bump into a doorway now and then and have had a few  more unbalanced moments but that also seems to be lessening. The spaced out wonky feeling was pretty weird during month 2-3-4 after fsr. I am hoping that left me too.
 What i do still get is a feeling of pressure inside now and then. I am hoping that goes too.

oh, i found this site that has all sorts of descriptions of various types of headaches but didn't save the link... it was  a place called International Headache Society or something like that and the address began with a bunch of numbers. Some of you with headaches might find yours described in there lol....maybe a google will turn it up.

I had some bad weird headaches about four months post fsr but they've settled now too. (and i hope they stay settled!)

Best wishes,
Windsong

[okiesandy]

After Ck treatment I had numbness down my face and at the corner of my mouth. My cheek bone feld like it was dead. Balance was not better just different tinnitus less and now coming back with 3 sounds. Yea! I  always did like parties. Now I can have my own.

I parctice balance all of the time. The Wonke feeling is with me 75% of the time. I am blonde you know. Maybe I just didn't notice it before. All in all so far I am very please with my choice of treatment. I will see on the 7th of July if "Ivan the Terrible Tumor" has headed off to tumor heaven. RIP Ivan!!!

[ppearl214]

After Ck treatment I had numbness down my face and at the corner of my mouth. My cheek bone feld like it was dead. Balance was not better just different tinnitus less and now coming back with 3 sounds. Yea! I  always did like parties. Now I can have my own.

I parctice balance all of the time. The Wonke feeling is with me 75% of the time. I am blonde you know. Maybe I just didn't notice it before. All in all so far I am very please with my choice of treatment. I will see on the 7th of July if "Ivan the Terrible Tumor" has headed off to tumor heaven. RIP Ivan!!!

Aye-men to that, sista!
xoxo

[djameson]

I did not have numbness untill 6 months after 5 session FSR.  I had the tongue and lip numbness with some eye twitching then.  I am one year after treatment and all is normal except for slight tongue numbness which feels like I burned a spot with a pizza.  It is a dime sized spot on the AN side but Dr. Riggamonti at Johns Hopkins thinks it may gradually get back to normal.  I can live with that as the tumor has shrunk from 2cm to 1.5.  My hearing and the tinnitis are the same as before treatment.  The ringing does seem to change from time to time as others have noted but returns to the hissing after a while.  I guess the tissues are healing from the radiation. 
My best to you all.
David

[Chris]

Hi,
I had stereotactic ratiation late last year. We don't have GK in Australia yet as far as I know. I started with facial numbness from the temple down to the mouth. My AN is still in the swelling stage but I have noticed my temple doesn't feel as numb. The loss of sensation around my mouth tends to feel worse when I am tired or if it is particularly cold. I am hoping to get more sensation around my mouth. Although no-one notices it, it just feels weird. I wish I had looked at this site when I was considering my options. There is hardly any information on radiation treatment here. I received plenty of information on surgery and the specialist left it up to me to find out anything else.
Regards
Chris

[mindyandy]

I am now 6 months post CK and feel some numbness on AN side. Probably swelling??? I do hope it goes away.

[Jimbo]

Hi,
I had GK 3 weeks ago, and have not yet experienced any change in the (rather mild) right ear fullness that was experienced since my AN diagnosis in April. I did experience a few episodes of severe imbalance last week, which has been successfully treated with steroids.
Jimbo

[mindyandy]

ARRRRGGHHH>....No more steroids for me....they didnt help me.....Numbness sensation is what I'm feeling side of face/tongue. I dont have MRI till the 18th.....No fun.....
Have others that had radiation had these problems? I'm prime 6month post CK....