ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: Janey on May 01, 2016, 08:38:03 pm
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Just to update on my situation after GK this past Friday in Pittsburgh at UPMC. I felt
pretty good Friday evening, and also on Saturday. However, I woke up this morning with
some serious dizzyness. It is evening now and has not let up throughout the day. During watch and wait I believed most of my useful hearing was gone on the AN side, but 48 hours past GK - it's really gone!!!! Tinnitus is the same. I am not alarmed by these events, thus the advantage of prior
research, but still a bit discouraged. I know symptoms may come and go - just trying to be
patient!
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Hang in there! We're pulling for you......
Cary
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Hang in there Janey. My hearing pretty much disappeared after CK then fluctuated and came back over the next 6 months...so it's not necessarily gone.. The first 6 months are the worst. Every day you are a little closer to this whole episode in your life coming to an end.
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Thank you mac84 and PaulW for your words of encouragement. I felt a little better today.
Keeping busy - I think that helps.
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Yup, definitely fluctuates. Mine has been up and down and the down was almost gone, then it comes back up.
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Called the doctor today to report the hearing loss and dizziness. Started on a steroid pack.
He said that I should see some improvement in a couple of days. Hope you are all doing well!
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Hope all gets better with the steroids. I am scheduled for mine this Thursday in Pittsburgh also. Hoping for the best and to put it all behind me. (yes, just a little nervous!)
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Good Luck to you, jeeper 182. I finished my steroid dose pack yesterday morning. The dizziness
is much improved, and the hearing increased a little.
I was very nervous for my procedure over a week ago, and if there is anything I
can share with someone facing gamma knife @ UPMC, I'd like them to know that as for the
procedure itself - it was amazingly easy. Everyone was phenomenal - nothing, and I mean
nothing hurt. If one could only know this beforehand, it might save a great deal of anxiety!!!!
Again, good luck and I'll say a prayer for you!
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Thank you so much for talking about how you felt after your radiation treatment That's what I'm going to be set up for in Omaha NE. I am scared to death what it will be like. I started having balance problems and some headaches so I took ibuprofen for the headaches. I have high blood pressure now which I can't seem to get down very normal and the stress of this isn't helping me either. Im hearing from everyone "oh you'll be fine" those are people who don't understand what I'm going thru. This is a life changing thing in my life now.
We'll take care and I like having someone to listen to or talk to about this dumb tumor!
Donna
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Hi Janey, I hope you are feeling better since taking the steroid pack. Thanks for keeping us updated on your progress. I have started my process for Cyber knife. Going to second appointment to meet another doctor on the team. Getting MRI and Cat scan. Then from there picking a date to do it. I am getting nervous to say the least. Best of luck with your journey!
To all on this thread who are also going through this, Good Luck!
MG
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Hi Donna3 and MG,
Good luck to you both with your upcoming procedures. I am doing very well this week.
I feel great, and hope that as time goes on I will not experience any new symptoms.
Donna3, we all understand your anxiety. I pray that you will be comforted as you await the
time of your procedure. There are a group of people who do understand what you are facing -
it's us here on this forum! We are all rooting for you!
MG - keep us appraised of your Cyber knife experience. God bless!
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Thanks Janey! :) I will keep you posted.Keep up the great updates!
Blessing,
MG
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Hi Janey,
Glad to hear that you are feeling good since my experience seems to be following yours. Thank you so much for the great description of the treatment process. You were right on and that kept me from being anxious that day. Didn't even need to take a 'calming pill' the night before. 2 days after, I started feeling dizzy/lightheaded and started the steroid pack. Have had several miserable days and am on day 3 now.
Didn't go to work today, but am hoping to go tomorrow. Knowing that you are doing better gives me hope for the future. Patience has never been my strong suit and I hate feeling like this. (For all you Deadliest Catch fans: every time I walk, I feel like I'm walking across the deck of the Time Bandit on rough seas).
Hope all on thread are doing well. Keep us posed.
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Hang in there, Jeeper182, I felt that exact same way for a few days - and improved a little each
day until I was finished with the steroid pack. I worried that the extreme dizziness might return
after I stopped the steroids, but it has not! I feel a little tired off and on throughout the day,
but it hasn't interfered with routine life. I hope you are feeling better soon!
To the rest of you on the thread - hope all is going well.
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Hello! I am now a month past GK. My husband and I are just driving home from a short trip
to Pigeon Forge/Gatlinburg, Tennessee. We had a nice Memorial Day holiday. I am feeling fine. Still
have all the pre-GK symptoms (mild balance problems, a bit of "wonky head", tinnitus and hearing loss). The only thing that is a little worse is the hearing loss, and occasional fatigue.
Jeeper182 - wondering how you are doing, as you are a couple of weeks behind me in this AN
treatment journey! Hope all is well.
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Hi Janey,
Glad to hear you are doing well. Unfortunately, I am not doing as well. In addition to the balance, wonky head, pressure in ear, lightheaded issues, I have also developed some facial nerve issues. (Noticed when I couldn't spit my toothpaste out right). Also my eye doesn't close all the way. That has been very annoying since now I can't wear my contacts and have to deal with glasses. I haven't worn glasses for any length of time in 30 years and its driving me nuts. (I can have issues that only 1% of people get, but can't win the lottery, haha). I was prepared for everything but he facial nerve and I admit that it freaked me out a little bit although it has not been that bad.
Went back to dr Lunsford on 5-23 to review. He gave me another steroid pack hoping to help, but as we all know, its mostly just waiting it out. Also gave me drops & ointment for the eye and that is making it feel better. I also had some issues with driving. Hard to describe it, but it seems like my eyes were doing something strange.
I have been feeling a bit better. Less wonky & better balance. My hearing came back quite a bit, but then went away again. Feeling a little more lightheaded today & am wondering if the fluorescent lights might have something to do with it as it didn't seem as bad over the weekend.
Have a vacation scheduled starting 6-10 & am driving to Virginia Beach. Hopefully I will keep improving in that area. Still tend to get tired early in the evening, but that's a bit better too.
Luckily nothing else has gone wrong. You just never know from day to day. Will keep you updated.
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Hi Jeeper182,
So sorry to hear of your issues. The problems with your eye, the facial nerve involvement,
as well as the general aggravations of dealing with SSD, balance problems, lightheadedness, etc,
are surely discouraging. I hope you will see some major relief of these symptoms soon. As you
say, we just don't know what's coming day to day.
When you get to Virginia Beach, just sit by the ocean and breath that healing salt air!
Safe travels on your vacation - keep us updated. God bless!
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Hi Janey,
Glad you had a nice trip and you were able to enjoy it! :D Keep us posted on your journey.
Take care,
MG
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I had Gamma knife 3 weeks ago for 6 tumors on my brain.The screw spots were sore but I have began losing hair in the back on the right side,its bigger than a silver dollar,but I feel sick,and am still having headaches. Any one else having these problems?