ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: pb on January 05, 2010, 06:55:13 pm
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The date is set. Next Wednesday is my day for gamma knife. Learned maybe too much today reading of others experiences, but think it's the best choice for me. Tumor is 1.9 by 1.7 on the left side. Hearing loss and balance issues in the dark are what finally caught the ENT's attention.
I thought I was well prepared for gamma but reading on the site makes me think I didn't ask every question there was to ask. Sure had plenty of pages of notes!
I was given a 50-70% chance of saving hearing in left ear. How soon will I know if it was saved? I know with possible swelling later it can change hearing, but I assume if the nerve is damaged hearing loss would be immediate. Am I correct? I am glad to read about the warning of sudden hearing loss and getting meds.
How long were most of you out of work if you had gamma? I have planned 4 days off work. Reasonable?? I'm a teacher and don't want to go back looking like Frankenstein. My grandson is more concerned that I will turn into "the Hulk." Gamma rays ....get it? Not sure I'm into green. Too hard on the clothing too. He was pretty funny - guess that's a 12 year olds sense of humor.
I haven't named the "beast" but think of this whole ordeal as writing a book. Sounds like it could be the size of a Harry Potter book too.
Thanks for letting me ramble on. Friends and family have been so wonderful and supportive but y'all know what it's like. :) The roller coaster continues.
pb
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Paula -
one of the drawbacks of reading Forum posts is that it can make you question just how well prepared you are for treatment. Reading posts can also totally freak you out at times - which is why some docs tell their patients not to come here.
Anyway, I am totally confident that things will work out well for you. You have made a very good decision (the best choice for you, which is extremely important) and you are in great hands. I know that for a fact ;)
If you do turn into the Hulk, make sure someone is there to take pictures LOL My twins' (soon to be 14) biggest question before my surgery was "Will the doctor shave your entire head?" To this day I'm not really sure if they wanted to hear yes or no. On one hand it probably would have freaked them out; on the other they would have found it very cool. The way it was they thought my surgery scar was gross, but I was a hit with all their friends ;D
I don't know the answer to your questions about hearing loss, but if you should ever need a BAHA or a TransEar our doctor can provide you with either. I'm partial to the BAHA, but the TransEar is well liked by most who have it.
Best,
Jan
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Hi pb,
I had gamma knife on New Years Eve. Going back to work tomorrow. I probably could have gone back sooner, but I had already requested 3 days off, so why not use them? The pin/screw holes in my forehead are surprisingly small. No swelling either. Kind of looks like two tiny freckles.
Good Luck
Jim
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Jim,
Somehow I missed your posts. I did not realize Cleveland Clinic could do gamma knife on tumors up to 4 cm. Sure sounds easier than the route I took. Oh well, future reference (hope I won't need it).
Cyndi
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Hello pb
congratulations on setting a date. This is one of the most important milestones.
I don't think that hearing loss happens immediately after the procedure (if it does it is very rare). There are two types of hearing loss: one due to damage to the nerve itself - this is is seldom a sudden occurrence, it happens gradually over time, so there would be a steady decline, and is usually non-reversible. The other is due to the AN swelling and pressing the nerve, and/or to reduced blood flow which essentially chokes the nerve. This is the one that can cause the sudden losses that you see frequent reports of in the forum, and can be treated with steroids.
The rule of thumb generally is that the better the hearing you have going in, the better the chances to preserve it.
Recovery time also varies from person to person. It is not uncommon to experience fatigue after any radiation treatment, so it is a good idea to generally take it easy. I planned to take a week off after my GK, but it turned out that I didn't need it at all. I could have gone to work the next day - but I did take it generally easy for a couple of months after the procedure, trying not to overstress myself and taking naps here and there.
Except from a few exceptions (like one recently reported on the forum), the pin holes are not such a big deal, but may cause some bruising and swelling. I didn't read carefully the note they gave me after my treatment, which recommended to use some cold compresses to relieve swelling, so my forehead for slightly swollen for a couple of days. Also some pain on the pin sites and along the jawline may not be uncommon during the first months after the treatment - ibuprofen worked for me.
I am sure that your grandson would appreciate your looks with the head frame on.Good luck with your treatment and keep us posted.
Marianna
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pb,
Congratulations on making your treatment decision! I hope that you are able to get all of your questions answered to your satisfaction. There are many people who have had a lot of success with gamma knife, so I hope you will be one of the ones coming back to tell us about your successful treatment!
I understand the "information overload" that you can get from reading about the treatment options. I felt that way so many times over the past few months! Sometimes it helped me to take a few days off from thinking about it.
Lyn
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PB, Good for you! You are taking the necessary steps to get this under control and get better. I had GK just over a year ago, and it turned out to be the best decision for me. You will be fine and we'll send up prayers for you to stay calm cool and collected (hey, you're a teacher and do well with stress!) I stayed out of work for around 5 days, but truth be told I was feeling ok (if anything a wee bit tired, and the fatigue seemed to hang on for about 8 months.) Marianna was spot on suggesting the naps and not overtaxing yourself. The frame left no lasting marks for me and I healed fine. You may notice some weird numbness at the screw sites which gradually wears away in time. Everyone seems to have their own unique aftermath story, but many of the stories here ring the same. The oncologist told me applying the frame was the worst part, but it goes so quickly and for most it is uneventful. After that part, it's a piece of cake. My hearing is actually doing well.
Best to you and I'll be watching for YOUR story.
Regards, Joey
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pb,
Congrats on making a decision and setting a date, that really is the hard part. At the time the procedure seemed like a big deal but the next day I was amazed that my tumor was treated and I was on the road to recovery. My friends and family kept looking at me like they were looking for evidence of the tumor's demise but I wasn't any different, except less stressed. My dr. put the pinsites up in my hairline so they weren't visible. The top of my head was numb for a while but it was really only noticable when I washed my hair. Otherwise, no recovery issues. Take your days off and recover not only from the treatment but also from the emotional stress you've been under.
Hang in there, you're on you're way to forgetting you have a tumor at all!
Beth
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Hi, Paula ~
My (slightly belated) congratulations to you on reaching a treatment determination. Please don't allow the dreaded (and useless) 'what if's' to undermine your confidence in that hard-won decision. I'm sure you'll do just fine, as so many other GammaKnife patients have before you, including quite a few folks that post here on a regular basis.
Jim
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Thanks to all for the helpful information. I'm getting things ready at school - and I'm very lucky that I have and incredible teacher to sub for me when I'm gone. All your information and help are greatly appreciated. One of the questions I was continually asked by friends was, "How did you get all your information?" This is such an incredible site for help, information and yes, for overload too, and I must admit I've done that a few times! :) But in the long run I can't imagine dealing with an AN and not having all the facts, including the overload.
I appreciate all your prayers and well wishes. I will let you know how it all goes.
Thanks so much for your help,
pb
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Also a late congratulations and best wishes from me, to a soon-to-be fellow radiation patient. Just for the record, I had my last treatment on a Friday, flew home on Sunday, and was back at work on Monday morning. When I felt tired during the first week, I would just take a quick nap at my desk. ;)
Steve
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When I felt tired during the first week, I would just take a quick nap at my desk. ;)
Steve
Steve, they let you do that @ work? :o Any job openings?? :D
Good luck tomorrow, Paula. Hope all goes well. I'll be thinking about you ;D
Jan
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Good luck tomorrow. We'll all be thinking about you. GK is awesome!
Grace
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Best of luck at your GK tomorrow. I had mine done on a Friday and returned to work the following Monday. I still have usable hearing in my AN ear. Again, best of luck!
Gary