Radiation Swelling and Facial Nerve

[ColleenS]

I am five months post radiation and my facial weakness has just started. I have had pain and swelling on my face where all three main trigeminal branches are, but so far my smile was fine. If my face is stationary there is no droop (yet), but if I smile it is lopsided. I was told the swelling from the radiation could stay for a year or two. Hopefully, the nerve will not be permanently damaged. Has anyone else gone through this?

[kestes]

Hi Colleen, I am 5 months out of GK as well and I haven't had the facial issues, but have just noticed an increase in dizziness/vertigo.  I just have to be real careful taking quick turns.  I realize as well swelling starts a different set and type of side effects and I have been told the one to two years also.  Best wishes and hope it gets better for you.  Have you contacted your Drs?  They might could offer some steroids to help.  I just tried that for my dizziness and I felt absolutely awful, so will just be dealing with the dizziness the best I can. 

[gary.s]

I am approaching the eleven month mark post Cyber Knife. As the tumor swells from radiation, it pushes on the facial nerve. As a result, I have facial numbness on the AN side from my chin to the outer edge of my eye. My tongue and palate also experience numbness. It feels like pins and needles, kinda like novocaine is wearing off after a dental visit. I also get dizzy on a daily basis and feel off balance when walking. My November 2018 MRI indicated that the tumor was shrinking, although the symptoms have not changed. My doctor told me that I might get another swelling episode between 12 to 18 months. So who knows what my next MRI will indicate when I take it in May.

We are all experiencing similar and different symptoms, depending on the location and size of the tumor. I find that lots of rest, eating well, exercise and relaxation are key to feeling better. Best of luck.

Gary

[ColleenS]

I am five months out of radiation and my facial weakness has continued to get worse. My eye hardly closes so I am having to ointment and patch much of the time, including nighttime. My pain has somehow gone also to my trigeminal branch on the opposite side of my tumor side along with my jawline, including numbness as you mentioned Gary. That is very weird to me. I am currently on a 1-month regime of steroids that has helped the trigeminal pain some, but not much else, unfortunately. Hopefully, this tumor will dies quicker than a couple of years.

[Dlip246]

Hi all!  I am very new to the group and I am experiencing the similar issues.  6 months post CK and have had weeks of hemifacial spasms.  Would anyone be willing to share their follow up stories with us?

thank you!

[gbly]

ColleenS,
Sorry to hear you are going through this too.

I developed synkinesis after RS, and I have a few posts on the journey of it.  But it has also made me realize how lucky I was to get it ID'd early, I suspect if it would have been later, the outcome would have been worse. 

I eventually have done botox to help even up my face, it has worked, but it too also brings pros and cons.  It is a journey and although not easy, I hope you will be able to look back and have it as a memory only.

Keep us posted.
v/r GB