Author Topic: Swelling Issues  (Read 3604 times)

ColleenS

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  • I have learned to watch birds and smell the roses.
Swelling Issues
« on: March 08, 2019, 12:54:59 pm »
I have swelling on my AN side due to radiation. I wonder if anyone else has experienced issues on the other side of their head, face, and eyes as I am? It is not as severe as the AN side, sometimes very minor, but it is there. Definitely above my eye (trigeminal) and ear. Not so much the face, but head and ear. It seems crazy, but wondered if anyone else felt anything on the other side since radiation, if you are dealing with swelling issues as I am?
5/2/17 @ Vanderbilt Translab approach with Drs. Haynes & Chambless
Readmitted on 5/7/17 for CFL, lumbar drain; CFL repair surgery 5/14 & sprung on 5/15
10/18 5 Radiation treatments for tumor regrowth
3/19 Pain, swelling, facial paralysis
5/19 Facial paralysis, numbness

kejac

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Re: Swelling Issues
« Reply #1 on: March 15, 2019, 08:34:05 pm »
Hi, I have had what you are describing. I was treated by cyberknife left side. I had tingling around the eye and tinnitus on the opposite side. The ringing would come and go, it wasn't a steady ring like on the AN side and I didn't have the fullness in the ear. I was worried that something might be growing in there! A scheduled scan showed no growth on that side. The tingling above the eye didn't last to long, maybe a couple weeks. My AN side, thats a different story.... the ringing never stops.

KJ
Tumor discovered 8/2012 10x5x5
WW 6 months tumor grew 12x6x6
CK treatment Stanford 3/2014
6 month scan swelled to 15x9x9
1 year scan tumor reduced to 14x7x6
2 year scan tumor reduced to 12x6x5
3 year scan tumor stable 11x6x5
5 year scan no change 11x6x5

ColleenS

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Re: Swelling Issues
« Reply #2 on: April 02, 2019, 03:54:10 pm »
Thanks for your reply. I have had more facial weakness and the numbness and pain on my non AN side and this is on steroids. My non AN side has pain, mainly in the jaw and cheek/ear. It is pretty steady too. I have not heard of the symptoms of facial issues jumping sides before. Glad these are merely symptoms and the last MRI showed my beast dying!!!
5/2/17 @ Vanderbilt Translab approach with Drs. Haynes & Chambless
Readmitted on 5/7/17 for CFL, lumbar drain; CFL repair surgery 5/14 & sprung on 5/15
10/18 5 Radiation treatments for tumor regrowth
3/19 Pain, swelling, facial paralysis
5/19 Facial paralysis, numbness

notaclone13

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Re: Swelling Issues
« Reply #3 on: April 02, 2019, 05:29:19 pm »
Hi Colleen, sorry to hear about facial pain. How long after the radiation did you get your latest MRI? Great news that the beast is self-destructing.

ColleenS

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Re: Swelling Issues
« Reply #4 on: May 03, 2019, 02:46:02 pm »
Three months after the treatment was the first post-toast MRI. I go again at the end of June which will be 8 months post-toast. My pain is minimal now, but I have increased facial weakness. My mouth when I talk or smile looks like Popeye. My ey does not blink hardly at all so I patch it closed about 75% of the day and of course all night with ointment. My facial nerve pain is minimal as I mentioned, so that is really good. I AN side is pretty much numb, including my lips and tongue too. My facial weakness set in about month 5, post-treatment.
5/2/17 @ Vanderbilt Translab approach with Drs. Haynes & Chambless
Readmitted on 5/7/17 for CFL, lumbar drain; CFL repair surgery 5/14 & sprung on 5/15
10/18 5 Radiation treatments for tumor regrowth
3/19 Pain, swelling, facial paralysis
5/19 Facial paralysis, numbness

jami

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Re: Swelling Issues
« Reply #5 on: May 03, 2019, 08:28:06 pm »
Me too!

Not as much as the AN side, but i have felt some numbness and a few ear aches on the non-AN side.

Jami
Jami
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5/17/18: 2.7 x 2.2 x 2.1cm
8/12/18 right retrosigmoid craniotomy @ UNC Chapel Hill
8/15/18: 1.0 x 0.4 x 0.4 cm
3/04/19: 1.0 x 0.8 x 0.5 cm
Cyber Knife being planned

Removal of rt auditory and balance nerves