ANA Discussion Forum
Treatment Options => Microsurgical Options => Topic started by: HoosierRick on November 30, 2011, 09:27:21 am
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Hi, I am a Newbie...I have been reading posts for a while now and decided I would join in the conversations. I am 43 and was diagnosed with a right side AN on 10-13-11. It is relatively small (3mm x 3mm) but has already taken 25% of my hearing in the right ear. I have Tinnitus (driving me crazy...esp in quiet rooms). I am flying out to HEI this coming Sunday...Dec.4th...with surgery scheduled for Dec.7th. My wife and I wanted to make the trip into a short mini-vaca so we are going out a couple of days early. My Dr's are Wilkinson/Schwartz...I am very thankful for all the info I have learned on this site and for all those that have been through this before. We are staying in the Seton Guest Center...any info on that would be great. Thanks!!
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Best of luck to you! You will be in great hands! I was at HEI/Seton in June 2010. I lived in LA for about 6 weeks. Happy to chat about any questions you may have. Just send me a message if you'd like to talk via phone...maybe easier than typing :). Good luck!
Kris
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Hi Rick and welcome to this forum .....
I was a hoosier for 5 years, earlier in my life, when we were in grad school at IU. ;D
As Kris said, you will be in great hands at HEI! My husband and I also flew out several days early for a mini-vacation before the big day. My surgery was in May of this year and we thought it would be warm in sunny California. How wrong we were! It was sunny, but the temp never got above 70 the 16 days we were out there! Very unusual but we needed our light jackets the entire time.
We, also, stayed in Seton Hall (a total of 16 days). Seton Hall is nothing fancy but it was clean, comfortable, and a wonderful support with others going through the same surgery. Like Kris, if you want to know specifics, send me a PM and I'd be happy to talk with you, as well.
Best thoughts.
Clarice
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I wasnt aware that surgery was performed on such tiny tumors and so quickly after being diagnosed?? 3mm x 3mm is not 'relatively small' its actually tiny and barely visible on a scan..
Is there a reason why youre proceeding with surgery so soon after being diagnosed and with such a tiny tumor? Interested to hear your reasoning if you wish to share.
all the best for your surgery :)
chris
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I'll chime in here, since I just had my 3mmx3mm AN surgically removed not long after I got diagnosed :)...I didn't see the point of waiting for it to grow. It would just get bigger, cause more hearing loss, and be harder to remove without more complications. It was the right decision for me. Thats the short and sweet answer LOL...its been a long day!
Incidentally...While 3mm is small, I saw my MRI and it is definately visible-looked a little smaller than a pea.
Good luck with your surgery. Let us know how your recovery is going when you can. :)
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HeidiC hit the nail on the head...or should I say in the ear! Lol. I already have 25 percent hearing loss...and because of the location of the tumor...about as far outward in the IAC as it can get...any growth at all would take more hearing. And I would rather have a 'chance' of retaining some hearing instead of letting that darn little thing eventually take it all. Plus, I am not the W&W type. I am young, in good health(other than this crazy tumor), and at this time...thankfully...have a good job with good insurance. Don't see any reason to put it off. Just one persons opinion...
BTW...Kris, your story is inspirational. Thank you so much for talking with me! I told my wife what you had to say and it made her feel much better. :)
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Hi Rick,
I love the Yankee banners in the background. I grew up in NYC, I'm a big Yankee fan. I had a middle fossa a little over 13 months ago. Dr. Roland and Dr. Golfinos did the honors at NYU Medical Center. Post surgery is challenging, but you do get better. Every person responds and recovers differently to these operations, so don't be discouraged if you want to be yourself immediately. I have read great things about the place you're going to. I didn't access this site until well after my surgery or I might have considered it as well. However, my doctors were fantastic, they saved some of my hearing, my facial nerve works very well. I have had a ring in my head for years, and it has progressively gotten worse since the surgery. I wish there was a magic pill to stop the noise, but I keep researching, hopefully I find a way to get rid of it. God speed my man, you'll be fine. Keep us all informed on how it's going.
God Bless.
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Hi Rick,
My surgery was at HEI nine months ago (end of Feb). My tumor was larger at
1.3 cm but still on the small side. My husband and I stayed at Seton Hall which was adequate - but the Best part of Seton was being able to talk to others going through the same thing. There were people from all over the world and all over the United States going through one common experience together. Everyone was at different stages of the process, but sharing and experiencing this together with others was so helpful and encouraging. I feel that it really helped me be more positive during the experience.
I wish you the very best! Stay positive and be patient and keep us posted!
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Chances3...Love the Yankees!
Thanks to everyone for the words of encouragement and the helpful tidbits about HEI. I truly feel that I am going to the best place for me. I will admit, the closer the surgery gets, the more the nerves are coming into play. It is probably a common theme...to get nervous prior to major surgery...but with some of the obstacles that those of you on this forum have overcome, and continue to overcome, your sharing HELPS!
Rick
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Got through all the pre-op tests and am cleared for surgery. Ahhhh, that was a fun day...not. ^-^. Tomorrow the fun really begins...10am. Really liked meeting Dr.'s Stefan and Schwartz. Liked them both a lot!! Have been staying at Seton for 3 days now...it is a nice facility. Like others have said, not anything great, but nice enough and it is great to be right here next tos the hospital. Talk to u all soon.
Rick
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Hi Rick .....
It all sounds very familiar! :) Many thoughts and prayers for tomorrow. Have your wife log on and let us know how you are doing ..... until you feel up to posting yourself!
Clarice
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Good luck tomorrow! We will all be thinking/praying for a successful outcome! Keep us updated and get a lot of rest...
Kris
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Oh, how well I remember pre-op day! Hard to believe you can spend the entire day going from one test to another to another. I'm sure you won't read this until you're a postie, but I just wanted to wish you well as you go into surgery. I'll be thinking of you today and hoping for the best possible outcome. I hope someone will post for you so we'll get an update.
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Have you in my prayers right now Rick.
Keep us posted.
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Hope things went well, Rick.
Best,
Jan
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I am an official postie now...it's been 5 days since my surgery and I am progressing well. The surgery was successful and I have retained some hearing, just don't know how much yet. :) My biggest issue to date has been dizziness and balance. Which was expected since my tumor was small. Nothing...and I mean nothing...really prepares you for how you feel when you get out of surgery. It's been one heck of an experience so far. I seem to require a lot of quiet time and the light is bothersome if I am in it too long. But, I would not have done anything different. The Dr.s here are remarkable, personable, and just the best. I am now released from the Hospital and am back at Seton. Doing well and thankful for all the kind words and prayers...Thanks!!! ;)
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How wonderful to hear that your surgery was successful and they were able to preserve some of your hearing. May your recovery be sure and uneventful! Welcome to postie land!
Tam
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Very glad to hear the good news. Keep us posted on your recovery. ;D
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Hi Rick .....
So good to hear you are doing well. It is not surprising about the balance thing. Rest, rest, walk, rest, rest, walk, etc. It is really hard to make yourself get up and walk when your visual cues are all skewed, but it really will help your brain adjust more quickly.
Have you tried sunglasses to help with the brightness of light? The need for quiet is partly from the adjustment to the new way your brain is perceiving sound. It will get better. You might try an earplug in your good ear to see if it helps any.
You also still have some brain swelling, which takes a while to go down. It really sounds like you are doing very well.
Thoughts and prayers continue.
Clarice
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Good to hear from you Rick, and very happy to hear the surgery went well. We'll have to make a Yankee game together !!
Stay strong, the worse is over, now it's healing and recovery time.
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Rick,
So happy to read that you made it through with flying colors. Although the healing journey is a longer one, it is much better to be on the post op side! Be patient and kind to yourself...healing does happen...quickly in some ways at first and then continually over the long haul. I am 18 months post op and have continued to improve. As I mentioned when we spoke, if you or your wife have any questions or just need to chat...don't hesitate to reach out!
I am thrilled that they preserved some of your hearing...wonderful!
Take care!
Kris
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Hey Rick,
Two weeks out. How are you doing?
Tam
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Doing well...my balance is slowly coming back...I imagine it will be awhile before it gets close to normal though. Riding in a car is still quite the experience...just too much info flowing through the eyes I think. The last couple of days I have had some facial issues, like my right eye doesn't want to close sompletely, and my mouth droops a little on the right. I have noticed that when I drink through a straw that some liquid will seep out on that side...ha! The dr.'s had said that this could happen. They are giving me another round of steroids and antiviral meds and said it should clear up in a few weeks. Nothing major that is causing any real problems though. I still get really tired after just a bit of exercise. Usually take a nap during the day and am fine after that. I still believe I would do the same thing all over again. My hearing is getting better every day...the fullness in my ear is not as prominent. I am so thankful for the Dr.s at HEI. Nothing against anywhere else, but they were and are great! Thanks for asking Tamster!
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Hi Rick,
Tired and fatigue is normal, don't be afraid to take some naps. I went back on steroids two weeks after surgery for my face and eye, all is well now. Overall, sounds like things are going in the right direction, hang in there.
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Thanks to everyone on this forum! And I want to say HAPPY NEW YEAR to all!!!!!
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Hey Rick, sorry I hadn't joined in at this point on wishing you luck and all that...I see another successful HEI story...I too had MF at HEI, almost 2 years to the day you had yours! Anyways, I hope you have had a great holiday...I know how that one goes when you are trying to recover...take care!
Jay
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Hi Rick,
I'm really glad to hear you're doing so well.
I'm scheduled for the same surgery next week myself. I started a separate thread for posting any words of wisdom for someone still on the pre-surgery side, I'd love to hear from you!
All the best for a continued speedy recovery,
Liz
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Recovery was going well until yesterday. I had been walking about 20-30 minutes a day and the balance was getting better. And then I started having pain in my calf. Went to the Dr. and had an ultrasound done...seems I have a blood clot. Ugh!! Now I am on blood thinner...giving myself 2 shots a day in the stomach...and taking 2 pills a day. Man it seems like it will go on forever. The blood thinner is making me dizzy, along with the dizziness for surgery, I am struggling. :(
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Hey Rick,
You're not going to believe this - three weeks post op I developed a blood clot in my right calf. It's called a DVT - deep vein thrombosis. I was hospitalized for three days, took shots of Lovanex to my stomach for 10 days and was put on a oral blood thinner called Cumaden for 6 months. My surgeon told me that in over 20 years he has only had 3 blood clots. You and are getting more common by the day, Yankee Fan, Middle Fossa approach and now a blood clot.
It was a struggle to get around until the pain went down, and spending 3 days back in a hospital three weeks after surgery made me depressed ( I'm upbeat by nature ). That was a real low in my recovery. Hang in there buddy, think of which Yankee game we will go to together.
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Rick, I'm really sorry to hear your news. That's just dreadful. I hope you start to feel better really soon. Wishing you all the best!
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Hi, Rick ~
I've read but not posted on this thread - up until now but this seems like the right time to do so.
I was pleased to learn of your successful AN surgery and, up until now, excellent recovery. Blood clots can happen and I'm sorry this happened to you. Do what you have to do to get past this obstacle and try to get back to your otherwise good recovery. Remember that this set-back, as unwanted and unpleasant as it is, will be temporary. Once you're healed and whole, it will be forgotten, as most negative experiences are. So, try not to allow this to overwhelm you and know that lots of folks you've never met are praying for you, now.
Jim
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Hi Rick .....
What a bummer to have the blood clot show up after such a good post-op recovery in progress!! I hope you know these things can happen, but as Jim said, it is temporary and soon you will be back on the positive road to recovery.
Many, many thoughts and prayers that it dissolves quickly and you will soon feel better.
Clarice
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Hi Rick, I just wanted to say that I sent a prayer for the desire that your recovery gets back on the better path soon. You have a great mind and with that, you have a lot going for your recovery!
Stephsf