Author Topic: What to Expect?  (Read 1120 times)

ColleenS

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What to Expect?
« on: October 21, 2018, 10:12:06 am »
So I have finished the five stereotactic radiosurgery treatments @ Vanderbilt Medical Center in Nashville with Dr. Attia. I am very tired and experiencing slight dizziness when standing or walking and a slight headache. My question is how long does it take for the tumor to swell and what symptoms will I have? I know everyone is different. Will my current issues go away or become worse as the tumor swells?
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

gary.s

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Re: What to Expect?
« Reply #1 on: October 27, 2018, 03:39:26 pm »
Hi ColleenS,

I had five sessions of Cyber Knife in April 2018 and had similar symptoms. I was tired for at least a few months, taking naps during the day and just falling asleep on the couch. That finally went away, and what I found is to listen to your body. When you need rest, that is what you should do. I had dizziness and still do after six months. The headaches come and go, especially if I get a bad sleep.

My doctors said that the tumor can swell anywhere from 6 months to 1 1/2 years, so no telling when it will occur. My tumor is impacting my facial nerve and I assume as it swells, my face may become more numb. Once the tumor begins to die and shrinks, some of these symptoms should decrease or completely go away. I am hopeful that is the case.

There are several of us that had radiosurgery this year and we are all going through various issues. Let us know how you are doing as the days and weeks go on. Be well.

Gary
Mild symptoms July 2014
MRI 1/3/2017 rt side AN 1.40 cm x 1.59 cm
MRI 3/5/2018 AN 1.70 cm x 2.07 cm
CK April 16-20, 2018 at Barrow Neurological Institute, Phoenix, AZ
9/2018 hearing aid Phonak Audeo B and Phonak Cros B
MRI 11/30/2018 AN 1.62 cm x 1.83 cm

ColleenS

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Re: What to Expect?
« Reply #2 on: November 08, 2018, 09:07:49 am »
Thanks for replying Gary. It will be interesting to track the radiation symptoms and outcomes for the patients this year. It has bee not quite a month for me. My treatment was 5 sessions just 16 months after a Translab surgery that left just 1% of the tumor on my facial nerve. The bugger grew back to almost the original size. My symptoms now are mainly still fatigue (but better each week) and very dry eye and nose (affecting my 5th cranial nerve). So my swelling seems to have started. I have some paing in my ear and face, but minor at this point.

Can others who have had radiation this year share the dose and symptoms, please?
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

Javier80

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Re: What to Expect?
« Reply #3 on: February 06, 2019, 02:35:14 pm »
Hello all, I just finished my 5th SRS treatment session on 1/30/19 here in Houston. I have been experiencing fatigue and some headaches. I have my first MRI March 28th 2019 any other symptoms that i can expect, anyone? My AN is 21mm x 33mm on the right side. My hearing is 100% gone from a craniotomy on 04/2017

ColleenS

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Re: What to Expect?
« Reply #4 on: March 08, 2019, 12:49:30 pm »
 I am now five months out of radiation. I mainly have issues with swelling that is pressing on the trigeminal nerves on my face (all three main branches) as well as very dry nostrils. My left AN eye does not have a working tear duct since my AN surgery, but the dryness is definitely worse now. I take steroids once a month for six days to get a bit of relief. The rest of the month I endure with OVC meds. This is my choice since I do not want to take other things at this point. The swelling will run its course eventually. I have pain on my AN scalp side and in my ear that is from the nerves coming back alive (doc says) from the AN surgery, nothing to do with the radiation. So all in all, hanging in there.
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

 


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