ANA Discussion Forum
General Category => AN Issues => Topic started by: Nancy Drew on October 23, 2008, 02:09:21 pm
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Hi everyone,
Well, I made it through GK, and I am happy to report that my hearing seems to be fine. I think I came out with what I went in with. I have had some ups and downs, but I am pretty sure my GK was successful. I guess time will tell. The doctors were great, the head frame wasn't that bad, and I was in the GK machine for only 27 minutes. After the head frame was removed, I was stable enough to leave the GK center after 10 minutes. I even walked up the four flights of stairs in the parking garage to get to the car with no problems. The first stop on the way home was at a 7-11 down the street from the GK center. I walked in and got my diet coke, and I just knew right then and there that I was going to be fine. I am only two days out, but I am feeling very positive at this point. I know there is a possibility of some things coming up down the road, but I am just trying to live in the moment.
Thanks to all of you for your support.
Nancy ;D ;D ;D
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Yippee! So glad everything went well for you and that you are feeling positive about your experience. Awesome!!
;D ;D ;D
Sue in Vancouver USA
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Nancy,
a VERY hearty congrats to you, you "postie toastie" :) (I know you were waiting on that title, eh? :) )
Onward and upward now...to continued wellness!
Phyl
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Nancy:
Most of us are well aware of the angst you went through deciding on treatment, doctor and facility. That all seems so far away, now. I believe many prayers were being answered as you completed the GammaKnife treatment smoothly and, apparently, without any real complications to speak of. I'm very happy for you and pray that your recovery will be trouble-free, quick and complete.
As for our support, that was always a given and of course, you're very welcome to it. Now, I urge you to relax and enjoy your post-tostie status. :)
Jim
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Nancy Drew~
A well-deserved WHOO-HOO for you!!
K
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I walked in and got my diet coke, and I just knew right then and there that I was going to be fine.
Gut talking to you again, I see. ;)
I also like the bit about walking up four flights of stairs in the parking garage, 10 minutes after your treatment. They were not exactly coddling you, I guess. :D
I have been watching for your post, it is great to hear that you are done, you can still hear, and you feel like it went well.
Congratulations. May your first six months go reasonably smoothly, and may your future MRIs be dull and boring.
Steve
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Congratulations, Nancy.
Glad your GK is over :)
Jan
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Nancy,
Great news on your GK treatment! With a positive attitude like yours I'm sure you'll be fine -- congratulations!
Wendy
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Congrats, Nancy! Now, on to the next chapter of your life!!
Debbi
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Hi!
Thanks to all of you for your kind words. I am a little worried today. I walked seven miles with a friend, and I held up better than she did. Is it normal to get a burst of energy like that after being zapped? It was nice to get out, and it was a beautiful day here in CO. My hearing still seems to be the same as before GK, but I notice that the tinnitus is a little louder at times. I have some slight ear pain, but Tylenol works well (Advil didn't do the job) I keep waiting for something "bad" to happen. Is this normal? Seems like everything is just going too well---not that I am wishing for anything bad to come up.
The only bad thing I can say about the GK procedure was when they gave me the "happy" medication (Versed) in my IV. It had the opposite effect. I did great when they put the head frame on (so, people don't freak out about it), but I cried from the time they put me in the MRI machine until they rolled me out of the GK machine. The doctor said I must have had an adverse reaction to the medication. Thanks goodness for a supportive team of doctors. They really were like cheerleaders, and I made it through it quite well, tears and all!!!
Again, thanks to all of you for your support. You guys have been my cheerleaders also!
Nancy ;D ;D ;D
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I am so happy for you! Your great story, which I have followed for a while, sounds
like you are in a new happy chapter of your life. I pray for continued success for you.
It makes me feel great as I watch and wait!!!
Pauline
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I keep waiting for something "bad" to happen. Is this normal? Seems like everything is just going too well---
I will risk getting in trouble with you, and say "it sounds normal for you." ;D
I think it is a combination of elation that the treatment is over with, and the fact that radiation doesn't necessarily do anything right away. With a larger AN, you might have felt more of a wallop from it, but most of the effects take time to take hold. Your AN doesn't know yet that it is a goner.
You may feel some fatigue and/or lack of concentration when you get back into work. I suspect you will get a reminder that you had radiation treatment in a few months (in case you forget), but with a small AN like yours, I would be surprised if it gives you much trouble. If you can hang on to your hearing, you will have aced this thing.
Enjoy your energy!
Steve
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Congrats Nancy Drew. they'll likely be some strange sensations but on the whole, you'll be just fine. Welcome to the other side!
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Steve,
I like that word "normal". You are off the hook with me!!! Sometimes I think, "Did they really give me radiation?" It makes sense about the elation of the treatment being over with. I was definitely a "nut" case during the whole process of deciding and waiting. I was really tired last night, but I walked a slow two miles this morning. I think it is probably best to pace myself.
Since I have felt so good after GK, I feel sort of guilty that people have sent flowers, brought over food and magazines, etc. Seems like I should have at least been off my feet for awhile to justify their kindness. Sure would love to have some more food coming in though!!!
Nancy ;D
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I am a little worried today. I walked seven miles with a friend, and I held up better than she did. Is it normal to get a burst of energy like that after being zapped? My hearing still seems to be the same as before GK, but I notice that the tinnitus is a little louder at times. I have some slight ear pain, but Tylenol works well (Advil didn't do the job) I keep waiting for something "bad" to happen. Is this normal? Seems like everything is just going too well---not that I am wishing for anything bad to come up.
Nancy ;D ;D ;D
We are all never quite sure what to expect after our treatment choices, so oftentimes our capabillities supercede our expectations of what might be. Enjoy the "normal state" of things.
Kate
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I'll take all of the NORMAL I can get! ;D ;D ;D ;D ;D ;D ;D
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OK ??? So maybe the AN is talking to me now. This morning when I got out of bed, I was pulled to the left (my AN side) and slammed up against the wall like a magnet. When I tried to pull away, I went slamming back into the wall. I had to get my husband to pull me back to the bed. I took some Tylenol thinking maybe the AN had swollen, but I threw it up ten minutes later. I stayed in bed about 45 minutes, and when I got up the pull to the left wasn't as bad. Eventually the pull to the left calmed down, and I was left with just a bit of dizziness. I took some more Tylenol, and I managed to go out for a short walk with my husband by my side just in case the dizziness became a problem. I will call the doctor tomorrow to see if I should be worried. I must say that I was disturbed by this incident. Have any of you experience something similar? I'm still feeling positive . . . just confused.
Nancy
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Hi Nancy,
That does sound like something with the AN and/or radiation acting up and affecting the balance nerve. Can't hurt to check in with the doctor and discuss it. Fortunately it didn't last too long. Always turning left might have made navigating our world a little difficult.
I notice you are taking Tylenol, no Ibuprofen. Is that for a reason, or just a preference? I ask only because I found Ibuprofen very effective for minor AN symptoms. I'm sure it is like all other AN things, and varies by person.
Hope you continue to do well, and are able to turn both left and right on a voluntary basis. :)
Steve
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Hi Nancy,
That happened to me at night too. I remember getting up and listing to the left (my AN was on my right side) and walking right into the dresser. I also remember going to the hair salon and sharing that I felt great and less dizzy only to get up out of the chair and list right into the wall.
That did get better. I still get off balance if I am over tired.
It is good to check it out though.
Kate
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I've also had this sensation of being pulled to one side after I had CK. Mine probably started a couple of months afterwards. Sometimes it was like being pulled with a magnet, sometimes it was like the floor was severely sloped though I know it's flat. It's very unsettling, but my episodes usually didn't last long and eventually went away altogether. My neurologist put me on a low dose of klonopin that seemed to help in the meantime. You'll probably have a few months of this fun stuff, but it gets better with time.
JB
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Donnalyn, do you use night lights now that maybe in places we never normally had them for the night trips? That is one thing my dr is big on saying as he said we will have balance issues in the dark when maybe in the day it won't be as bad.
Cheryl R
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Everything is much better today. I have a call in to the the doctor, but it sounds like what I experienced was a "normal" reaction. Steve, I was using Advil for headaches and ear pain, and it didn't seem to help. I switched to Tylenol, and I got immedicate relief. I have always been an Advil fan, but it seems Tylenol is doing the job. Donnalynn, no worries. Good wishes are always welcome. JB, I also felt like the floor was sloped. Sounds like we had a pretty similar experience with the magnet feeling also. Do any of you feel "on guard" just waiting for somethiing to happen---especially in the beginning post treatment.
Thanks for sharing your experiences.
Nancy ;D ;D ;D
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Hi Nancy,
I hear ya, when you say that you just kind of wait to see what the next day brings. I now am trying to decipher what is sinus issues and what are AN issues. I know I have some more swelling going on at 3+ weeks post CK. I have a DR that is not very good at returning phone calls. So I am doing Ibuprophen every 4 to 5 hours. Hang in there! This will pass I am sure.
hugs,
Sherry
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Hi Sherry,
Those sinus issues can be complicated. Is it just me? Seems like I have read a lot of stories here with people going to see their ENT with a sinus problem and in the process finding out they have an AN. Hope you hear from your doctor soon. My docs office called awhile ago, and the PA said the swelling was probably pushing on the balance nerve. She said it was a good sign that I wasn't having any problems today. She said that Advil and Tylenol are not always strong enough to reduce the swelling, and that is when steroids come into play. Maybe people can chirp in but from what I understand, the swelling can sometimes cut off the blood supply to the balance, hearing or facial nerve. I think that is why it is important to keep on top of the swelling. I would say keep on calling the doctor. I know one thing . . . I will be happy when I get past the "newbie postie" phase. I think I will feel more comfortable being a "postie" once I have some experience under my belt. Best wishes to all on the AN journey.
Nancy 8)
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Hey Nancy!!
I've been remiss on responding to my PM's this weekend - so I just wanted to get a quick post to you here...Glad to hear you're doing better today! This may sound weird, but I think I might almost feel better with a few symptoms after GK (or CK), because I'd know they actually did do something and that the zapping was doing its job :) Know I'm always trying to find a positive, but that is probably a stretch, right ;D You know I do hope this doesn't remain a problem for you, Nancy!
Talk to you later,
Cindy
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Hi Cindy,
You know, it's not weird at all!!! Even though the balance issue wasn't fun, it did validate that I indeed had my AN zapped. I had been wondering there for awhile if I even had GK because it all just seemed to be too good to be true. Not that I am wishing for any serious symptoms, but at least now I know the AN is responding. Hopefully it is on its way to "death".
Steve,
On a side note! Remember when you said I should ask the docs for the GK head frame for my Halloween costume? They said fine . . . for $10,000. Lucky you. You have your CK mask. Maybe I'll get some SPOCK ears!!!
Nancy ;D ;D ;D
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Normally steroids are prescribed to help with swelling from the treatment (higher tinnitus / full feeling in the ear). When I had GK I felt like I just finished doing yard work for the whole neighborhood! I just chilled, watched TV, and crashed early...I felt much better the next day.
As for hearing.., mines pretty much the same. Tinnitus plays games, but I've noticed it's worse when I'm really tired. The good news is that I can sleep through the barking dog next door :) I put the AN ear up and I'm in dream-land :)
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Nancy,
I am sorry I missed keeping up with your GK date. I have not been on the site for about 2 weeks. I am so happy for you that it is all over and you are feeling good. Sorry you had that one incident. I knew you would do fine just like I did. Isn't it great to have it all behind you? You're a trooper, and I'm sure you will continue to do well. Take care!
Grace
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Thanks so much to all of your for your support. I am beginning to see the connection of being tired and the symptoms getting worse. Yesterday I went back to my volunteer work at Children's Hospital where I work on the oncology unit. The folks there told me kids often deal with radiation better than adults. They said "shame on you" for trying to do too much too soon. They said the biggest part of the healing process is to take it easy (rest) and pace yourself. I figure they are the experts so I came home and chilled out. The fatigue is bothersome at times. Day by day. I am still feeling very positive.....die tumor die!!!
Nancy ;D
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Nancy - Give us an update. I want to know how you are doing. Grace
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Fatigue has been horrible. Called my doctor's office yesterday, and the PA said fatigue usually goes with symptoms caused by swelling. I have had some minor issues with balance, speech discrimination and dizziness. She said those things could be enough to cause fatigue. PA prescribed steroid treatment, and I started it today. A bit of an energy burst earlier, but after some exertion a bit tired. Those kids at Children's Hospital wore me out today.....bowling on the Wii is a real workout! Hearing seemed bad today...plugged ear. I am staying positive, and I hope the steroids will do their job. I keep telling myself it has only been two weeks today since GK. Thanks for inquiring, Grace. Nice of you to keep a watch on me. Hope you are doing well.
Nancy :)
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Hi Nancy,
Well, steroids were always a possibility, I guess. I join you in hoping that they will do their job. I still occasionally experience days where it seems like my hearing is down a little, but I think it is more an impression, and if it were measured, it would still be the same. I'm not sure whether the steroids will bounce back your energy level right away, but they should keep other swelling symptoms in check. Hopefully it will all blow over in the next couple of weeks.
Take care,
Steve
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Hi Steve,
I really didn't want to go with steroids since I have had some problems with them in the past affecting my mood. But, so far so good, but I am only through the first day and into the second day of the pack (Medrol 4 mg). Tired this morning, but I stayed up late last night. Hoping for better sleep tonight. I agree with you about the hearing being more of an impression. I still do my car radio test from time to time, and I notice that the hearing in my AN ear is often better than my nonAN ear (which was the case before GK). I think it is a positive sign that my hearing appears to be preserved at pre-treatment level. However, I do notice that the ear gets plugged sometimes, and I have to strain to hear from the AN ear. I take note of the fact that people around me sometimes say, "You must be having a bad hearing day today." I am sure my tumor is going..............WHAT!!! It is figuring out what to do with the radiation. I have lots to be thankful for. I was worried about hearing issues, and it seems like all is going well there.....no SSD. Hopefully the next time I post here, I will be up and going in full force. What a journey this is.............the unknown is sort of hard for a "control" freak like me. Bumps in the road are likely to be expected. Encouraging to hear such positive stories here. Also, I admire those who are dealing with their struggles with a good attitude which in turn give us "newbie posties" hope.
Nancy :D
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Nancy:
I think you're doing very well. As you noted, 'bumps in the road' are to be expected. No recovery - including my own - is totally smooth and without a few setbacks and/or problems. If you've retained your pre-CK hearing in the AN-affected ear, you're already ahead of the pack, as it were. I trust the steroids will be effective and not detrimental to your physical or mental health. I think your attitude is quite positive and I'm sure you'll be just fine, bumps and all, because you can handle them. :)
Jim
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Thanks Jim,
I'll have my first post GK hearing test early Dec. I think the volume is fine, but I do think word recognition might be a bit off. Maybe that will improve, but if not, it is something I can live with. Thanks for your support.
Nancy
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Nancy:
I go for my 2nd MRI on Dec 09 at Wake Forest. The first MRI was 6 months after the procedure; it will be 19-months between MRIs. Necrosis was happening on that 1st MRI, so let's hope all is dead, dead, dead.
Grace
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Hi Grace,
I hope your MRI in Dec. will show that the AN is dead, dead, dead. Looking forward to hearing your good news! My ear has been plugged up really bad today, and it seems like something is rattling around in my head. I have three more days of steroid treatment left. I feel a little down sometimes, but I am hanging in there. I am ready for life to get back to "normal". Things just don't seem quite right yet, but I am sure as time passes it will get better. Still, I think I have it pretty good compared to some folks out there......so, I can't complain that much.
Nancy
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Nancy,
If I'm not mistaken, you just became a hero member. There's something to cheer you up. :)
Steve
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WOW,
I am glad you pointed that out, Steve!!! I better be careful. I might catch up with you!
I slept 10 hours last night although I had to almost overdose myself on sleep meds before I finally fell asleep. Two more days on steroids so maybe getting to sleep will be easier once I am off of them. Good news is that I woke up feeling refreshed. I have this weird sensation going on in my head. Don't really know how to describe it, but I'll try. It feels like my brain (I guess there is one in there!) is swimming around in my head. Only lasts for a few seconds, but it is a freaky feeling. Kind of makes my eyeballs vibrate, too. I don't suppose radiation can affect eye sight, can it? I have noticed recently that I don't see as clearly as I used to. I use reading glasses sometimes, but my far vision has always been 20/20. It is close to my annual eye exam so I'll see what the verdict is. My eye doc has always said I have "young eyes" (whatever that means). Maybe the eyes have decided to catch up with the rest of my "old" body!!!
Nancy ;D
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Hi Nancy,
Just wanted to say, sorry you are having some side effects. Hopefully the Broncos cheered you up this week.
Haven't been around for a while and last I heard you were doing pretty good. Hope you are better.
Robyn
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Hey Robyn,
The Broncos win did lift my spirits. Hopefully they will pull themselves out of the pit they have been digging.
I am happy to report to all that I have felt pretty much like my "old self" today. My ear isn't plugged, hearing is decent, balance is good, the brain is not swimming, and I took a 3 1/2 mile walk earlier with no problems. Today is my last day on steroids, and it's only one pill today. Maybe they worked! Taking it day by day, but it sure is nice to have this good day. I needed it.
Thanks to all,
Nancy ;D
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Hi Everyone,
Good news today. Yesterday I called the doctor because I thought I was having some hearing issues, and the doctor said he wanted me to come in today for a hearing test. Seems my hearing is the same as before I had GK. Maybe I was having some sinus/allergy issues the past few days because I do feel like I am having a "good" hearing day today. Also, my AN doc says he only knows of one case where a woman lost her hearing soon after GK (I am only three weeks and two days post GK). I think he said if there is true hearing loss it might come up later...like three months or so down the road. I was so elated that I had not lost any hearing that I wasn't really listening to what he said about hearing loss. Has anyone had hearing loss come up later down the road post GK?
Nancy
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Hi Nancy,
My hearing in my AN ear was at 70% diminished at the time of my GK. At six months there was little change, but at ne year later it had worsened to about 80% loss.
Lisa
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.. I thought I was having some hearing issues... Seems my hearing is the same as before I had GK...
Told ya so!
I have had that feeling before, it something about noise, or the tinnitus, or a little feeling of pressure - who knows, really. The good thing is that you've still got it.
The answer to almost any question about ANs that starts off with "has anyone ever..." is bound to be yes, someone has. I expect I will lose more hearing over time; I was probably starting to lose some anyway, as I am in my other ear, just from getting less young, which seems to happen every year now. :)
I think Marianna pointed out in another thread somewhere that the big test will be at 6 months, to see if you are going to keep most of your hearing for a good while, at least. I'm just glad to hear that you are doing well so far, and seem to be headed toward a good outcome.
Steve
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Hi Steve,
I just read that thread where Marianna posted. She was right on with the info. Matched with what my doctor said, and I think I just needed to hear it again. The hearing test I had yesterday was really weird. Isn't the booth supposed to be sound proof? I heard people talking in the hall outside the booth. I pointed it out to the audiologist, and she said it didn't make any difference. She also said that the hearing in my nonAN ear (which has always had worse hearing than my AN ear) had improved. How does that happen? And, why can't they find different words to repeat. When you have had a lot of hearing tests, you sort of remember the words over time. I know you have a hearing aid, Steve. Have you had any problems with it? My mother has hearing aids, and it seems like she is forever going back to get them adjusted.
I am happy I had a good hearing test yesterday. I do think my hearing fluctuates, but perhaps this is true even for people with "normal" hearing. Hopefully I will work my way out of the being "on guard" phase and sail into the "don't worry so much" zone. Thanks for your smart words.
Nancy ;D
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Hi Nancy,
I agree, the hearing tests get pretty inane. It seemed to me that when they wanted to test my word recognition with the hearing aid in, they suddenly found a new word list with only simple short words like "cat" and "ball." I think the ambient noise (people talking, etc) is okay on a word test, just not on the tone testing part. I don't think they can really measure your hearing better than the nearest 5% or 10%, at least it seems that way to me.
My hearing aid is okay, I have thought about getting it adjusted, but I will probably just wait till March, when it will be one year. I am used to it now, and it is not perfect, but it helps in a lot of situations. Some days it definitely seems weaker than other days, so maybe my hearing is fluctuating too. I still hit the Ibuprofen now and then, when it feels like it is plugging up again. To be honest, I suspect you will have a few more bumps to get through before you can feel you are comfortably in the "don't worry so much" zone. But you will get there. I think you are in a good position, because the hearing in your AN ear was so good to start with, and you caught the AN early.
Steve
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Hi Steve,
I find that I am getting less young, too! Bummer! Yes, I feel fortunate that my AN was found early, and that my hearing was good at the time of GK and still is at this point. I am curious about the bumps still to come as you mentioned. I am feeling better for the most part, but I do notice that my engery has not come back to the level where it was pre-GK, and I am having some minor bouts of depression. Wonder if that has to do with the steroids I took. I have read here on the board that many people actually like being on steroids....gives them lots of energy. It did the opposite for me. Those six days I was on them, I felt on edge...mentally and physically. Hopefully I won't have to go that route again. Sounds like the OTC stuff is working well for you. I will keep that in mind if a hearing issue comes up again. And, I am going to try to work really hard on not "overreacting" to every little thing that comes up. Thanks for your posts. Always helpful.
Nancy