Facial numbness, please help!

[lori78]

I had 2 surgeries and radiation in 06 and 2007 for a large AN, with the last treatment being Gamma knife in March of 2007.  I STILL cannot feel the left side of my face!  I can feel pressure, but no sensation.  In the last MRI (April 2008) my doc seemed to think that the remaining tumor (about .5 cm) is pressing on the nerve, causing the numbness. (I can't remember which nerve)  My facial nerve was preserved.  I'm just very tired of this annoying feeling, like my face is half asleep, and am wondering if anyone can relate.

Also, for those of you who have had tumor shrinking/dying post radiation, is there an estimated time frame that tumors shrink, or does this vary?  Any ballpark statistics?  It is my understanding that as the tumor dies away, the pressure will be released and I may get sensation back?

Thanks,
Lori

[er]

Hello Lori,
I don't know if I am any help. I myself had surgery and the funny feeling in my face took a while to decrease. But it did go. There is still a funny feeling around the area where they open me up. Today after 3 year I had an episode where my whole left side of my face went numb, I started feeling fatigue and sleepy, then balance was off, and the loud ringing in my ear, then I had lunch and I started having problem chewing, I mentioned it to my husband and he could see my face getting drupe and speech slurring. He wanted me to put everything down and rest. I am feeling better now just a little pressure in my ear and surround scare, still loud ringing I just figure it is a sign of more healing. Usually it is pain on the AN removed side and facial nerves get funny but this time was a little different.
You will get better all of us are different.
eve

[Jim Scott]

Hi, Lori:

I'm so sorry to learn that you still don't have full facial sensation 15 months post surgery and radiation.  I also underwent surgery (retrosigmoid) and radiation (FSR) and never experienced any real facial nerve complications.  This seems to be a situation specific to your AN.  As such, I would rely on your doctor's opinion, as he has the expertise and knowledge of your situation none of us can possibly have.

As for shrinkage: apparently, there is no definite time frame.  My first post-radiation MRI (June, 2007) showed some shrinkage and the beginnings of necrosis.  This was just 8 months after my FSR treatments ended.  My next MRI (December, 2007) also showed necrosis and shrinkage.  However, I've read of post-radiation AN patients that didn't see any shrinkage for 18 to 24 months.  I would assume that once the AN does begin to shrink, it will relieve pressure on the facial nerve.  However, sometimes the tumor substance can be 'stuck' to the nerve, making it difficult for radiation to reach and, obviously, slowing shrinkage possibilities.  I'm certain there may be other AN radiation patients here who could offer something more concrete but this is about the best I can do, and so, I hope it will be of some use to you.

Jim    

[lori67]

Hi Lori.

I still have some areas on my head where I can feel pressure but no real sensation.  It used to be on the whole side of my face, but it has gotten better.  I can feel almost normal sensation on most of it, but towards my ear - still no sensation.  My doctor told me he wasn't sure if I would regain normal sensation in my face after surgery, because I had lost that before my diagnosis, but I've gotten some back.  Most of the side of my head doesn't feel like it used to.  It's a hard thing to explain - I can feel it, but not like I can on the normal side.

As far as the radiation goes, i can't really answer any questions on that, since I was translab only.  I'm sure someone here will be able to help you with that.

Lori also

[lori78]

Thanks to everyone who replied.  I guess I will just wait and see.  I appreciate your help!