ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: Janey on June 29, 2016, 10:49:56 am
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I am now two months post GK. I have the ever-present tinnitus that hasn't changed since
before GK. Hearing loss in affected ear (left side) is a bit worse. In the past couple of years I
have experienced some difficulty in concentration and become mentally fatigued occasionally, but
I have not noticed any worsening of this since GK. There are two symptoms that have become
a bit more of an issue for me since GK. The first is imbalance. I find myself bumping into
walls, stumbling about often. We live in WV and our area was impacted with the recent flooding.
I was trying to clean up the riverbank near our house - bent over to pick up some trash, and kept
going! Fell on a pile of rocks and really hurt my arm. All bruised and scraped up - thankfully,
nothing broken. Have been volunteering in some areas, but not helping with the physical clean-up!
The second issue is that extreme fatigue can hit out of nowhere! When it does, I am usually able
to lie down and rest a bit, and then feel much better. Knowing I am entering into the three month
phase, I will be aware of any new changes and make up-dates. I know these pieces of information
from others helped me a lot while in my decision making process about the AN!
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Hi Janey,
So sorry you fell and hurt your arm! :( I hope you heal quickly. Please be careful. You never know when that balance is going to go haywire! It's been just a week for me after having CK and I am totally exhausted! I am good in the morning and the run out of gas by about noon. My tinnitus is still the same and hope it stays that way. I am also more off balance then before. I took a walker to Walmart just in case I needed it. It has a seat and I used it once when I felt so tired! I thought I would be embarrassed but I got over that in a hurry. Keep in touch Janey. I am hoping you start to feel better soon.
MG
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Hi Janey,
Sorry about your arm. I will be 2 months post GK on 7-12. I was able to go on vacation the week of 6-13. I still had trouble with my eye (stinging & watering, not that funky stuff) while driving , but it got noticeably better by the return drive. I found the beach most healing. It was a bit of a challenge at first to walk at the water's edge since it is a bit of a slope and the water is moving in & out. I did that frequently and also stood where the waves were breaking, letting them push me off balance. I think these things helped. Wish I lived closer. I still have a little imbalance but not bad. However, I was in martial arts for years and have developed better balance due to all the jumping & spinning (and spinning while jumping). According to my neurologist, my brain picks up additional cues to keep my balance. Nice that all that training has helped me in another way! Still have some lightheadedness but not all the time and my eye is closing better. Fatigue has also gotten steadily better.
Had a follow up appointment with Dr. Lunsford on 6-27. MRI shows no change (as expected). Hearing test shows same as before treatment. He feels the facial nerve will continue to slowly improve. (I hope so... dying to get the contacts back in). I return in 1 year. Overall I feel much better than a month ago. Dr. says I should not have any return of symptoms, but we'll see.
Hope the flooding didn't impact you too much. Keep us up to date.
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MG - hope you will soon get over some of the exhaustion. Hopefully - our symptoms will all be
a lot better after a few months!
Jeeper182 - I'm glad you are doing much better and that the beach was therapeutic for you!
Both of you - keep in touch about your progress! Best wishes!
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Hi Janey,
I found both imbalance and exhaustion to be huge issues for me during my first full year post Gamma Knife. I didn't fight either one, I just accepted them as part of my recovery. I did try some vestibular physiotherapy for about 8 months, but usually felt worse after the visits for several hours. Quite nauseous to be honest. After the first year was over, my balance improved fairly quickly. The exhaustion slowly improved. Rest when you need to, it's the bodies way of healing.
Cathie.
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Good advice, Cathie!
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I found vestibular exercises to be too intense and likewise made me feel awful. What I did find to be very helpful was walking. When I walked for 1 hour per day after a week I started feeling a lot better and less tired. Straight after the walk I would feel exhausted. Essentially the more walking I did the better I would feel. If I slackened off on my walking regime within a fortnight I would be back to square one. I also found ginger sea sickness tablets to be useful. I took the maximum allowable dosage. At first I thought they were doing nothing, but then realised the days I felt normal again happenned after a week of walking and ginger sea sickness tablets. Getting up and moving around did make me feel like crap straight afterwards, but the more I did the better I felt.
Unfortunately AN's do knock about our vestibular system, this causes the fatigue. We become more dependant on visual cues and our muscles to know where we are. That creates a large workload on our brains, which makes us tired. With radiation it seems like our vestibular system is constantly changing, which requires us to be constantly adjusting for the first 12 months in particular. Rest when you are exhausted of course , but do try to get a regime happening to get moving. It will help.
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Thanks for the tip PaulW. Will try to walk on my treadmill. I want to get over this exhaustion sooner then later. :)
MG
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Hi Janey,
Sorry about your arm. I will be 2 months post GK on 7-12.
Had a follow up appointment with Dr. Lunsford on 6-27. MRI shows no change (as expected). Hearing test shows same as before treatment.
Hi Jeeper,
I'm curious why Dr. Lunsford gave you a folow-up MRI just a month-and-a-half after your original Gamma Knife treatment? I thought the norm was every 6 months post-op.
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Yes, PaulW, I believe walking is the "best medicine". I have been walking quite a bit, and I do
know that it makes me feel better all-around.
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I found walking on a treadmill didn't give me the mental workout I needed to get my balance adjusted
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Hi Mcrue,
Not sure why he went with 1 month MRI except I have some of those rare facial nerve issues & maybe he wanted a look to see if anything else was going on. Glad I don't have to go back for a year & hoping things continue to improve.