ANA Discussion Forum
Post-Treatment => Post-Treatment => Topic started by: artadvice on January 05, 2014, 08:46:15 pm
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I am new to the forum, but so happy to have found it. I was diagnosed the day before xmas w/ 27mm tumor. Doc says he thinks it's been there at least 10 years. In retrospect, now, I realize balance issues, hearing loss and facial tics are all related to that. I know the tumor has to come out. It's big, I can't concentrate, don't feel safe riding my horse and have trouble sleeping because of the facial tics. My daughter is expecting (my first grandchild) in May, and my first thought was to postpone the surgery until after the baby is born. I opted to do it now rather than later and I am HOPING that I will be ok enough to be there for her. I am having the surgery at Kaiser in San Diego w/ Dr. Cueva and Mastridomas, I feel good about them but any feedback is appreciated. I am curious about recovery options. I have read some horror stories on this forum as well as several success stories...I guess no one knows until its over. I will keep you all posted.
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I feel the same way.....scared to death!! I am scheduled for surgery January 16 at HOUSE in LA. My AN is much smaller but my anxiety level is WAY HIGH!! I have lost all hearing in the AN ear and in retrospect have had (and continue to have) some minor balance issues and facial tightness and/or numbness. It is hard to decide if some of what I am feeling is real or imagined now that I know I have the AN. I have a job, 3 young grandchildren and and a busy life like everyone else. I tried to take many things into consideration when scheduling surgery. Finally decided there is no "good" time. Cannot wait to have at least the surgery part over and get on with LIFE! I have read good things about Kaiser on this forum and wish you the best. Try to relax, or at least not stress all day every day :P.
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No need to be scared sh*tless. AN surgery is major surgery but it's not the end of the world. And you'll find that life is good after AN surgery; I speak from experience.
At 2.7 cm, your AN technically isn't "big" but it definitely sounds like it's time to treat it. I'm no doctor, but I think you'll be glad you had the surgery before your grandchild comes along - and I'm betting you'll feel more than "ok enough" to be there for your daughter.
Don't let the horror stories affect you; lots of success stories don't stick around the Forum because they really have no reason to.
Good luck with your surgery :)
Best,
Jan
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I am new to the forum, but so happy to have found it. I was diagnosed the day before xmas w/ 27mm tumor. Doc says he thinks it's been there at least 10 years. In retrospect, now, I realize balance issues, hearing loss and facial tics are all related to that. I know the tumor has to come out. It's big, I can't concentrate, don't feel safe riding my horse and have trouble sleeping because of the facial tics. My daughter is expecting (my first grandchild) in May, and my first thought was to postpone the surgery until after the baby is born. I opted to do it now rather than later and I am HOPING that I will be ok enough to be there for her. I am having the surgery at Kaiser in San Diego w/ Dr. Cueva and Mastridomas, I feel good about them but any feedback is appreciated. I am curious about recovery options. I have read some horror stories on this forum as well as several success stories...I guess no one knows until its over. I will keep you all posted.
I was alot like you on worry. I did so much research, and I only focused the problems. Lost 50 pounds on worry. Meanwhile, there are tons of success stories as well. I am now six weeks post op, and doing great. As long as you go to a place with a proven track record you have a great chance.
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Don't be scared! Put your trust in your surgeons! Recovery is much easier than all this worrying because you will be working towards getting back your life! There will be challenges to overcome, but most patients I met last month in the postop phase were doing wonderfully! Think positive, I have been amazed at my own recovery from translab. Karen
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I am waiting for surgery on the 28th January fr my 3.1 tumor. I know how you feel! My tumor contains cysts and I dont know how that affects surgery. I cant think of anything else at the moment. I have terrible asthma from childhood and am registered disabled because of this. My chest consultant says that I have only 37% lung function which sounds bad. The surgery is lengthy and I am so scared my chest wont stand this. I have no choice but to have this surgery so I have to trust the doctors and put myself in their hands. I am so sad all the time at the thought of leaving my wonderful husband and daughter.
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DIZZYGRAN ~
Although your asthma and limited lung function are problematic, I have to assume that your doctors would not operate if they were concerned about your ability to survive the surgery. In today's litigious society, doctors tend to be very cautious about taking risks so you are right to trust your doctors. I find it sad that you are contemplating not surviving the surgery. Although outcomes can never be guaranteed, I hope you'll seek solace in looking forward to being tumor-free and able to enjoy your life and your family and not dwell on the unlikely prospect of 'leaving' them.
Jim
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Jim is right. I learned the hard way about worry. I am so glad now that I am done. Make sure you express your concerns to your doctors. Then focus on the positive. Think how great it will be when you are done - it will, so focus on that.
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I too was terrified. I tortured myself from the day I found out the tumor had to be removed until the morning of surgery. Instead of enjoying each day, I was dwelling on what "could" happen. I am 11 weeks post op, I am doing extremely well. I am back to work and look like I did before surgery. Take each day as it comes and hang in there. Before you know it, you will be on here posting about your recovery. Good luck and God Bless.
Translab on 10/24/13
2.8 cm AN
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thank you and I know you are right I should just be getting on with life and enjoying myself but instead I just feel weighted down with impending doom!! However, I will try harder. Going for my post op tomorrow so thats a step on the road. x
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Don't try harder. Trust in your doctors and God, and let them take care of you.
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I also suggest that you get a journal and record your thoughts. I started one when it was determined that I had to have surgery. I didn't write in it every day, just when I felt the need. I recorded my thoughts, scripture and stories about the people who helped me. The last time I wrote in it was in the early morning of my surgery. I went to the bathroom in my hotel, while everyone else slept. I recorded what I thought could be my last words...it was very comforting because I couldn't say verbally ( no one in my family wanted to hear), what I was really thinking. Although I haven't written in my journal since that morning, I have read it several times and it has brought me comfort during my recovery. Looking back, you can see how far that you have come. :)
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Be strong, artadvice and DIZ!
Like artadvice, I had no non-surgical options, and I figured no choice = less anxiety.
Life is much better one year after surgery. Heck, life was better two months after surgery. And, for me, after the first few days and other than the temporary steroid side effects, recovery and rehab was actually sorta fun, walking lots of miles in the neighborhood, looking around as I strolled, birdwatching, afternoon naps.
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Dizzygran - You should also discuss your asthma/lung fears with your surgeon. Or maybe you already have. If your surgeon does not think it is going to be a major problem, then you should not either.
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Hi I actually saw my anesthetist today and although she thinks my chest is an issue, she thinks that there will be no long term problem and that apart from possible infection post operation I should be fine. Such a relief
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There you go. When you have a fear or issue, best thing is to discuss it with the doctor. Now you are all set.
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I was also very scared. I am now 15 months post op and doing great. No I am not the same as before but I have a great life. I am able to be active and work full-time. The hearing loss has been the biggest and most frustrating challenge for me. You are going to do great.
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The hearing loss has been the biggest and most frustrating challenge for me.
My hearing loss was the biggest & most frustrating challenge for me also. Lots of people adapt to it, but I never did; I was miserable.
There are good solutions out there - I chose a BAHA, but there is also the Phonak Cros, the TransEar, and the Soundbite.
You should investigate your options; don't just live with your SSD if it bothers you that much. The solutions aren't perfect - nor are they like having normal hearing again - but they sure beat doing nothing.
Best,
Jan
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I had Translab surgery in Kaiser San Diego by Dr. Cueva and Dr. Mastridomas last February 27th and found them to be a great team, both fantastic surgeons that have apparently done hundreds of AN surgeries together (I found the whole neurosurgery dept. at Kaiser SD to be top notch). They were attentive to me and Dr. Cueva has always called me back when I have called with my concerns. Seems like all of our post op experiences vary so much but at about 11 months since surgery I think that I am doing great. Still a bit loopy and SSD but since my surgery I have come such a long long way back to, well I guess they call it a new normal! You will need a lot of rest during recoup but you will be there to see your grandchild smile. Good luck to you with your surgery and with your grandchild. Robertb
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At 6wk post translab I feel great. Riding horses a little, am doing my normal farm stuff and booting work to FT next week. Put your trust in your doctors, and take charge of planning your recovery. If you are not much of a walker, try to start before you go to surgery, it will help you! Thinking positive thoughts for you! Karen
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Wondering how you are doing Artadvice. I was really scared too. Prayed like crazy before surgery. Very good result. No paralysis!
You asked about recovery. I did rehab at Magee in Philadelphia. It helped a lot. Among other things we did Vestibular Oracular Reflex Training. You can check out on Youtube VOR is all in the eyes. Teaching the brain to adapt - they don't like us to say "compensate!" I haven't seen mention of this work on the Forum.