Author Topic: Radiation Swelling and Facial Nerve  (Read 4176 times)

ColleenS

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Radiation Swelling and Facial Nerve
« on: March 11, 2019, 05:40:21 pm »
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?
5/2/17 @ Vanderbilt Translab approach with Drs. Haynes & Chambless
Readmitted on 5/7/17 for CFL, lumbar drain; CFL repair surgery
10/18 5 Radiation treatments for tumor regrowth
3/19 Pain, swelling, facial paralysis
5/19 Facial paralysis, numbness
10/21 Mild facial paralysis still

kestes

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Re: Radiation Swelling and Facial Nerve
« Reply #1 on: March 12, 2019, 07:12:14 am »
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. 
12mm diagnosed Feb 2018
14mm at 6 mo MRI Aug 2018
tinnitus, high pitch hearing loss, balance issues
GK at UVA Dr Jason Sheehan Nov 2, 2018
MRI May 2019, slight swelling of AN but showing necrosis - experiencing vertigo issues
Columbia, South Carolina

gary.s

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Re: Radiation Swelling and Facial Nerve
« Reply #2 on: March 12, 2019, 09:58:46 am »
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
Mild symptoms on right side July 2014
CK April 16-20, 2018, Barrow Neurological Institute
9/2018 hearing aid Phonak Audeo B and Cros B

ColleenS

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Re: Radiation Swelling and Facial Nerve
« Reply #3 on: March 27, 2019, 09:54:12 am »
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.
5/2/17 @ Vanderbilt Translab approach with Drs. Haynes & Chambless
Readmitted on 5/7/17 for CFL, lumbar drain; CFL repair surgery
10/18 5 Radiation treatments for tumor regrowth
3/19 Pain, swelling, facial paralysis
5/19 Facial paralysis, numbness
10/21 Mild facial paralysis still

Dlip246

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Re: Radiation Swelling and Facial Nerve
« Reply #4 on: September 14, 2022, 02:16:00 pm »
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!
1.4 x .83 x 6 cm (14 x 8.3 x 6 mm).  watched slowly grow for 2 years then CK January 2022.  3 months post CK hazy head, 6 months post CK now having hemifacial spams same side. Spasms haven't stopped almost one year after they started :(

gbly

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Re: Radiation Swelling and Facial Nerve
« Reply #5 on: September 20, 2022, 01:03:24 pm »
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