ANA Discussion Forum
General Category => AN Issues => Topic started by: justsimplyrhonda on September 28, 2008, 05:02:18 pm
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Hello it has been a while since I have been on here ...I was diagnosed with my AN Dec 2006 ...my surgery is set now for Nov 20th ...needless to say I am scared to death
I will be having Surgery at UVA ...with Dr Kesser and Dr Dumont ...I have been really Depressed ...they will be going through my ear to remove it so I will loose my hearing in my right ear . My big concern is singing has been a very big part of my life ...I have written alot of songs....and my work I do is performing mini concerts ...Karaoke shows .... Djing music ....and I sing at a number of nursing homes ...I just hope when it is all over that I can continue what I do.
The last time I was here I got alot of good support from alot of you on here and I truely appreciate it ..YOU ARE ALL AWESOME ;D
Any of you that would like to checkout my music go to Myspace.com and type in Rhonda Clemmons ...I would love your input on my music ....and any feed back you can give
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Rhonda,
If you've been here before on this forum you do know that you have a lot of caring people praying for you. I had my surgery Aug. 6th and I to love to sing. Your song says it all.....Leave it to HIM and He will see you through this. I'm deaf on my left side and hope that my next step is having a Baha to better hear. November 20th we'll all be anxiously waiting for some good news......Take a deep breath, and keep singing those beautiful songs.......God Bless.......
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Thank you soooo much ...it means alot to me ....I know there are alot of caring people on here ...and you are right God will see us all through ....just having some depression I cant seem to get out of ...I have been trying
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Hi Rhonda,
I am a singer as well (classically trained) and was extremely worried about this, as you can see if you search some of my threads. I started singing again after about a week and it sounded really LOUD so I had to stop. :D Doctor explained that it was still early days and that my head would take a while to settle down. A week later I tried again and it was much better. I have lost a little hearing (I think) but I seem to be compensating for it when I sing. (No soprano jokes please)
You will get back to singing as soon as you feel up to it. Your voice shouldn't be affected but how it feels (sounds internally) may be something you'll have to get used to. I know of a few singers with hearing loss--they have all gotten used to it. The brain (though a huge pain) is an amazing organ.
Of course, if you write your own music (jealous) you will just have so much more material to call on! It will all be fine.
Best wishes,
Marci
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I sing every bit as well postop as I did before surgery. Which in my case isn't saying much, ;) , but I concur with the other opinions that chances are you'll be singing again after surgery.
I know it's easy for me to say, but the surgery is not that scary. Actually, all you have to do is close your eyes! Truly, it will be OK. Keep busy with other projects in the meantime, and tell yourself that it is NOT brain surgery (though as close as you can get, I guess), and it is NOT cancer, and it IS treatable. It's not a cake walk - I won't kid ya - but you'll make it to postie-land in one piece, more or less.
Best wishes,
Tammy
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Who wouldn't be depressed? You have a good reason to be depressed, but maybe see a therapist (has helped me), or consider anti-depressants (me, again). I was depressed after the surgery, not before, but we are all so different. I seem to be better now, but I do have bad days every so often. Feel free to PM me if you want to.
Marci
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Rhonda -
don't be scared. Although AN surgery IS brain surgery, lots of us have been there before you and we've lived to tell the tale. As Tammy said, the surgery is a tough surgery, but it will be over before you know it and you can set your sights on recovery. Recovery does take time and patience, but you will get through it. We're here to help and support you in any way we can.
I'm not a singer, except when no one's listening, so I can't give you any advice along those lines. But I can tell you that if you aren't able to cope well with being SSD (single-sided deaf) there are options available. I have a BAHA which I've found to be an excellent option, and there is also the TransEar that others really like.
Depression is very common - both before and after treatment - so don't hesitate to discuss it with your doctor(s). There was an excellent article in the latest issues of the ANA newsletter Notes about depression that you might find helpful. If you don't currently receive Notes, contact the ANA about becoming a member and they'll send you the latest issue.
Jan
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I would think depression and scaredness is totally normal for this! I'm not there yet, I don't know yet when my surgery will be, so I'm in the freaked out and scared stage, but not quite where you are.
I don't sing where others can hear me either (trust me, it's a blessing for others, LOL), so I'm no help when it comes to the singing issues, but it sounds like you will be just fine with it, and just need to adjust internally to the changes you are hearing.
Vent away, it IS a scary thing. I'm sure none of us would have willingly signed up for this, but others have gotten through it, and so will you!
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You really have nothing to fear. Speaking from experience, you can get pretty terrified from reading all of the posts on this board, but remember- this is a support group. Don't take the experiences and problems here to be the gold standard. For every person who posts here seeking support, there are probably 10 other folks whose surgery went without complication and don't need any advice or support. And even if you do have a problem or two, you'll find that they're a lot easier to overcome than you probably originally thought. For example, SSD really isn't as bad as you'd think. Heck, I even have permanant facial paralysis now, and it's not nearly as bad as I thought it would be. Sure, eating a really big sandwich can be tough, but it's only a sandwich. If you find yourself overwhelmed at some point before your surgery, take a step back, turn off the computer, and focus on something you really enjoy doing. Also, from what I've heard, UVA has an incredible program, and Dr. Kessler is an incredible surgeon. You really have nothing to fear.
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Great advice and words of wisdom from PSwift - couldn't have said it better myself. All of the things I worried about before surgery (SSD, imbalance, facial paralysis, headaches) either didn't happen or, if they did, weren't as life-alterning as I thought. I am deaf in my right ear and have a crooked smile, but I am blessed in so many other ways. And, as have said before, I am still the same person inside as I was before surgery - now I just have the added advantage of knowing I am a strong survivor! ;D
Debbi
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Thank you all for the very encouraging words ...it really means alot ....I feel like a big baby ...I didn't mean to sound like that ...I guess my biggest fear is my kids ....all my family lives in Indiana and I am here in Virginia ...I have a friend who is really close and she said she would help as much as she could ....but I am not one to impose on anyone...I just hope it all goes well and I can be on my feet quick .
Thank you alll soooo much ...and thank you for checking out my music ;)
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Rhonda,
I have to say Donnalynn pretty much said it all. You definitely do not sound like a baby -- just someone with an AN facing surgery. The AN experience is a scary one but you will find you have more strength and courage than you think. Feeling aprehensive about your upocming surgery is normal. Worrying about becoming SSD, and the myriad of other possibilities can be overwhelming. We will be here to support you in whaever says we can and you never need to apologize for any feelings you have -- those of us who have been treated probably ran the same gammut of feelings and those of us who have not been treated can still relate to what you are feeling You will get through this.
Wishing you all good things,
Wendy
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Rhonda,
Donnalynn put it right, too! Never, ever apologize for expressing your feelings here or sounding like a big baby. Everyone here has been through all the fears you are going through. I'm a life-long sailor and a musician and the idea of losing my balance and my hearing was pretty depressing, but my brain has adjusted iteslf and compensated over time and I do pretty darn good with the lack of both! We just learn to play the hand we are dealt and try to find to find the pony in the room full of horse poop!
I am sure you have done your homework and researched your options as far as radiosurgery goes, right?
(Your tumor size is not indicated in your posts--generally speaking below 2 cm is an option for radiosurgery.)
Keep posting here for the support you need--we are here for you.
Capt Deb(http://i235.photobucket.com/albums/ee60/Captdeb_photos/pirate2.gif)
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Rhonda:
I totally understand your apprehension about the upcoming surgery and just wanted to do what I could to (a) reassure you and, (b) remind you that many AN surgery patients do just fine. I'm one of them. :) I'm one of those folks who underwent AN removal surgery and radiation (all planned in advance) and did very well. That was over two years ago an I'm pretty much back to my usual charming self at this point. ;)
Please take all the caring advice being offered, trust in God and vent whenever you feel a need to do so. That's part of our 'mission' here. To offer a place where AN patients can cry, complain, and generally just state their feelings to non-judgmental folks who have been where they are and completely understand their emotions, especially on the verge of undergoing AN surgery.
I think you'll do great and will be singing your little heart out for years to come, Rhonda. :) Stay strong and positive.
Jim
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Thank you Jim ....it means alot ....I have a question though ..should you have radiation after AN surgery ...or does that not apply to all AN surgerys ?
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Hi
You can have, depending on the size of the AN, radiosurgery via Gamma Knife or Cyberknife or other names that all do basically the same thing, which is destroy the AN with radiation. If an AN is closer to 3.0 cm or bigger, or the location is very near or on the brainstem, surgery is the preferred choice by most doctors. Sometimes a large tumor will be "debulked", or whittled down in size via surgery and the remainder will get "nuked" to kill all of the cells. So, no, not all surgeries include radiation in the treatment plan. If the surgeons feel that they have gotten all of the cells, then there is no need for additional treatment. This is why it's call microsurgery, as the surgeons use a microscope to make sure they get all the evil little cells! Tough and tedious work, and my hat's off to the fine doctors who do this kind of surgery.
Hope my simple descriptions help in some way.
Sue in Vancouver, USA
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Rhonda -
Sue's correct. Not all AN surgeries require follow up with radiation. My docs (neurotologist and neurosurgeon) were confident they removed my entire tumor, so in my case, radiation wasn't necessary.
Usually surgery followed by radiation is used for large sized ANs where the doctors surgically remove part of the tumor and then "kill" the rest with radiation. Surgery followed by radiation is typically used when the docs think that surgery alone will compromise the facial nerve, so they opt to remove what they safely can and then radiated what they didn't remove.
Jan
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Rhonda:
Jan and Sue are correct. Surgery + radiation is only used on large ANs and is certainly not mandatory. My neurosurgeon opted to go this route for various reasons specific to my case. I agreed. The result was excellent so it turned out to be a good decision. However, each AN patient presents a different situation and one size does not fit all, as it were. I'm sure your doctor decided on surgery, alone, in your best interests. Besides, radiation is always an option after surgery, even if it isn't planned in advance, as mine was.
I hope these messages both explain things as well as help to reassure you. We try. :)
Jim