ANA Discussion Forum
Post-Treatment => Post-Treatment => Topic started by: ANleftleo on June 16, 2011, 03:18:12 pm
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Tomorrow is my 3 months anniversary for the removal of my AN which went very well. I have learned to walk again although it still feels like I am on stilts going downhill and to the left when I get tired. My wife, kids and I just make jokes about the stumbles and wobbles.
I still have paralysis on the left side of my face though the nerve tested good post op. They told me it will be 1 to 2 years before I get back whatever I am going to get back in function. I chew using my left hand and just hold in front of my face to block the view. My eye closes better now and vision has improved. I wear a pirates patch on my eye at night so I don't have to worry about hurting it during the night. Got tired fast on the tape thing.
They took my acoustic nerve so I am deaf in my left ear and therefore I use a Phonak CROS unit to hear with. I have permanent Tinnitus so hearing in my right ear isn't wonderful either. I am much happier with the unit than I was without it but it does seam to chew up batteries like peanuts. I like some of things the unit does for me like being to have the TV sound go directly into into my ear via bluetooth and talking on the cell without touching it. I have an iCom unit which I wear around my neck that has a microphone to speak into, a jack to plug in other stuff and a button to disconnect from sound feeds. I still don't get enough volume for the left side but the Dr said he could increase the amplitude on the unit and therefore am hoping for improvement there.
I had the surgery at the University of Maryland in Baltimore. I spent 10 days up in the Gudelsky neuro unit and it was beautiful - it was remodeled a year ago. A big thank you to the Gudelsky's for their donation(s) to make such a wonderful place to recover in! My surgeons were Eisenman (ear) and Eisenberg (brain). They were nothing short of great as was the entire University of Maryland medical team. Everyday the staff set goals for me and kept me smiling. I had one setback I am still dealing with which is spinal fluid leakage. That kept me another week in the hospital. I am going to see my Dr tomorrow to start the lengthy process to get that issue fixed. My HMO (Kaiser Permanente) sent me to University of Maryland for the procedure therefore it takes awhile to get through the process to see my doctors over there.
So all in all went exceptionally well for me. I am thrilled with the outcome and with all of the medical staffs involved. A big thank you to Dr. Sklarew who jumped all over my AN and got me on the road to recovery. Any others who have had experiences with the Phonak unit I would love to hear about.
Thx!
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Leo ~
Welcome to the ANA discussion forums and thanks for posting that encouraging 3-month update. I'm delighted to learn that, even with a few complications, you're moving forward and doing well. I trust that you'll continue to enjoy a good recovery and thank you, again, for sharing with us. Well done.
Jim
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Hi, Leo. Welcome to the Forum ;D My AN was on the left, too.
I'm glad you are doing so well only 3 months post op. You'll continue to see changes as time goes on, in your balance and hopefully also in your facial nerve.
I don't have a Phonax Cros, but I do have a BAHA that I find absolutely amazing and a big help with my SSD.
If you get to the point where you are just totally unhappy with the Cros, you should ask your docs about a BAHA demo. I think you'll be impressed.
Best,
Jan
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Leo, glad to read the good reviews and reports, sounds like you are on your way which is so good. I am almost 3 weeks and cannot wait to be 3 months......so glad it is over.
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Thanks all for the kind words. I really feel like a new person these days and to be honest it feels very good.
Leapyrtwins~I wanted the Baha unit but my wife said no to it. Since I wear my hair short - I guess she thinks it might not look nice for her. Given how incredible she was during the tough part I have to go with her feelings. She was in my hospital room from morning to night. She even went with me to the hospital from 6am till they brought me to my room after 9:30PM on surgery day. So despite the fact the Baha would be simpler to use I am going to stick with the CROS unit.
Rivergirl~ Wow 3 weeks - let me see at 3 weeks I was still sleeping my barco lounger chair in the TV room as I couldn't walk steps yet without scaring everybody in the house. My brother had tied a rope to the handrails on the stairs so that I wouldn't fall down the open part on the landing. At 3 weeks I would get up 4 or 5 times a day and walk around for a minute or so then go sit down again. Emails would take me hours to write and I slept a lot!! So you are way ahead of me - congratulations! I think it is the attitude which makes the biggest differences in getting well quick. Just laugh at everything and relax as much as possible.
Thx again, Leo
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Leo -
I wear my hair short and my BAHA isn't noticeable, but I understand what you are saying; it's a little different for a woman.
It's great you have such a loving, supportive wife.
Jan
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You are right Leo, I guess I am doing good 3 weeks post op. I have tried to stay upright as much as possible laying my head down isn't the most comfortable. My husband has been bringing me to the pool at the local gym each day and I do walking in there and that has helped......I am getting there. That is awful about your balance, I was scareing my family the first week but I have compensated very well with the balance because my nerve was just about dead anyway on the right side so i compensated long before the surgery. Get well, get strong.
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Wishing for you that recovery will be speedy.