ANA Discussion Forum
Post-Treatment => Balance Issues => Topic started by: Sanch on January 29, 2009, 02:05:21 pm
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Hello to all. I am a new addition to the AN family as I was diagnosed with a 6mm x 4mm about a month ago. During that time I have been following in the same footsteps that most all the others have and was obviously lucky to be alerted to this site. I just recently realized that surgery is going to remove one of my vestibular nerves and I am VERY concerned about returning to the activities I like to do once the "recovery period" is over. I spoke to Dr. Antonelli last Monday. He’s from Shands at the Univ of Florida, and when I asked him about returning to my lifestyle, he responded by saying that I'll never be like I was when I was 16, but I should return to a normal life. Since I was specific about the activities I do, and got the answer I got, I didn't pursue it by asking for a definition of a "normal life".
So my question to all of you who have already had the surgery is, what can I expect in regards to how close I will be after the surgery to pre-surgery? The activities I like to do are Baseball (with my son), Softball, golf, motorcycle riding and mountain bike trail riding. I understand that a lifetime is a long time, and if I'm sidelined for a couple of years, in the scheme of things that's just a "bad time" during my life. But if I won't be able to do these things again....then that's a whole new ball game. Please be honest with what you've experienced. I've read how people were happy to be walking around the block and driving again. If this is the best I can expect I need to know so I can get my mind around this.
Also, has anyone ever attended any of the ANA symposiums? During my consultation with Dr. Antonelli he suggested I attend this fall as I was trying to gather information about percentages of patients that have had equilibrium, hearing, headaches, paralysis, etc. Which by the way he never gave me any numbers regarding his patients. I understand he has performed hundreds of AN surgeries, but I would have liked to have seen some statistics for his patients. Perhaps this was a little premature and he will be more forthcoming in future visits, but I’d be surprised that I was the first to ask. Is this a common response from your doctors? Speaking of doctors, has anyone ever had any relations with Dr. Fukushima? From his website it appears that he has performed over 1200 of these types of surgeries. Here’s the link to his site: http://www.carolinaneuroscience.com/index.htm
Thanks and good luck to everyone dealing with this and other issues. As a side note, I figure the upside is that with the odds of getting an AN, I feel comfort in assuming that people I care about will probably never have to deal with this!
Sanch
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Hi Sanch and welcome to the site! As you will find from reading posts here, if you haven't already, "results vary" from person to person. However, there are certainly many, many here who have positive stories about getting back to normal...albeit a new normal. I, for one, am 3 months post op and I have gone back to the gym and have started playing tennis again. I was driving just a few weeks post op and I never had to use a cane or walker post op - a bit wobbly initially, but no real problems. There are those here that have completed half-marathons, gone rock climbing, standup paddling, etc - all relativeily soon post op. Again, everyone is different, but there is every reason to believe that you will still be able to participate in the activities you love.
There are some folks here who have been to the ANA symposiums - from what I've heard, they are very informative and great fellowship with other AN patients. There are quite a number from the forum that are planning to go to Chicago this year. I'm sure it would be a great experience for you!
Take care and keep us posted!
Cindy
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Hi Sanch - and welcome, although I'm sure you wish you didn't have a reason to be here. We understand that. :)
Your concerns about returning to normal are common and valid. As Cindy noted, we're all unique, every AN is a bit different and so, there is no template for recovery. In addition, surgical outcomes simply cannot be guaranteed. However, as one who experienced a good (retosigmoid) surgical outcome followed by FSR (radiation) I can tell you that, in my experience, total recovery takes months, not weeks, but you'll get there, albeit with a few minor deficits - but perhaps not. To be realistic, assuming a complication-free surgery, I would guess that you'll be fine but perhaps lose a step in your more strenuous physical activities. Probably nothing life-altering.
I was a healthy (although not athletic) 63-year-old when I was diagnosed. Following my debulking surgery, I was home from the hospital within five days. I was driving within 2 weeks, with my surgeons approval. My Physical Therapist gave me 3 at-home sessions and then, pronounced me fit and no longer in need of her services. I was playing miniature golf (a hobby of mine) within 3 weeks of my surgery. Last fall I helped my adult son move. While he and his buddy did most of the heavy lifting, I did my share and except for being tired and a little sore that night, I was fine. Frankly, I thought I was totally recovered within about 6 weeks of my surgery but on hindsight, it took more like 18 months - and I had a good surgical outcome - no complications. My subsequent, planned radiation treatment was totally uneventful and I suffered absolutely no ill effects. However, at 63, I might have needed a bit longer to experience a total recovery than a younger person. I just know that I'm fine, now, and my doctor is elated over my recovery. I'm good with it, too. :) I wish a similar experience for you.
Jim
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Hi Sanch,
I completely agree with Cindy. There's a wide range on this site, but personally I was taking my first running steps at 3 weeks and was running again by 5 weeks. (I will say that at the beach I absolutely could not clamber around the rocks like I could before surgery.) The odds are that you will return to all the things you did pre-surgery, some sooner than others and you might even add a few new favorites. That's my honest opinion, based on what I've read.
Best,
Marci
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Hi, Sanch,
I agree with what everyone has posted thus far in response to your comments. I'd like to add that it's probably safe to say that when people have said they're happy to be walking around the block and driving again they're most likely referring to short-term "achievements" following their treatments, rather than long-term outcomes. There are so many variables in the whole AN experience -- size, location, severity of symptoms, post-treatment recovery issues, ... and the list goes on. It sounds as though you're doing a good job with your research and I hope you'll continue to find this forum to be a good source of information. The ANA symposium in Chicago this coming August should be useful for your information gathering as well. Best wishes as you continue your AN journey.
Catherine (jerseyGirl2)
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Hi, Sanch -
I'm with the others here; there is life after ANs - and it's generally very good.
I'm curious to know if you have considered radiation to treat your AN, rather than surgery. Surgery vs radiation is a personal choice. But you want to make sure you are well informed before you decide on any treatment, and with such a small AN, radiation is definitely an option.
I haven't been to any ANA Symposiums yet, but I hear they are really worth attending. August 2009 will be my first one and I can't wait ;D
Hope to meet you there.
Jan
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I am replying with a series of links to other topics.
1. Two by Waypoint, on the subject of Golf and Softball. Read them both for the whole story. Short version: you can if you want to.
http://anausa.org/forum/index.php?topic=8114.0
http://anausa.org/forum/index.php?topic=8228.0
2. One by Stoneaxe, on paddleboarding, a challenging balance activity. The last set of pictures shows the ice at Plymouth Rock where he went out recently. You can do all sorts of normal activities, but you may get a little nutty about doing them. :D
http://anausa.org/forum/index.php?topic=8379.0
3. A recent report by another new member on her good experience with Dr. Fukushima:
http://anausa.org/forum/index.php?topic=8607.0
4. A community topic discussing the upcoming symposium in August in Chicago:
http://anausa.org/forum/index.php?topic=7437.0
I agree with Jan that for a small AN, looking into radiation makes sense. In any event, you'll be fine. Your life just got interesting all over again. ;)
Steve
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Sanch~
Hi!
I hope that you have received some answers to questions but I will just chime in here with my experience. I was a PE teacher and very athletic - not great at anything, but OK at almost everything. Not to scare you, but I did have some complications - that was 13 years ago & surgery has come a LONG way, believe me! I would say I have a GREAT life now - I have 3 VERY active daughters. There are a few things that I don't do but I think it is because I never have taken the TIME to really work on & get that skill back to competition level. I didn't have kids when I had my tumor removed (I was 25) and got pregnant fairly soon and so the last 13 years have really been about raising 3 babies more than practicing the vast amount of activities that I used to do. Does that make sense? As they get older, I find myself picking up more of the things I used to do for pleasure b/c I have a BIT more time for me when they are at school. I have found other interests and I don't know if it is because they are easier for me or that I am just older and at a different place in my life. As a female, I doubt I would go out at 38 & find a game of pick up basketball anyway!! ;D However, I can go out and shoot and coach with my kids. Obviously, you will want to start back slow and in CONTROLLED environments - the only thing that you mentioned that gave me any concern would be mountain biking - just be careful, no edge of cliff riding for a while!! I think that the kids will be GREAT therapy for you!!
K
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Hi Sanch,
I understand your concern about the "should return to a normal life" statement. One of my surgeons said patients that lose a vestibular nerve "do pretty well". I had concerns about what that meant, just as you do. I lost a vestibular nerve during surgery, as expected, and I wanted you to to know that it does not prevent me from doing any of the activities that I did before AN surgery. I still play pickup basketball. I can't say that it is exactly the same as before, but it does not prevent me from doing anything I'd like to do. I describe it as having less balance in reserve. We have balance ability to catch ourselves if we slip on something. I just don't have quite as much of that ability as I used to. It's hard to describe. You'll do fine. ;)
Dr. Fukushima was part of my Skull Base Surgery team. And at local ANA meetings, here in NC, I've met many of his AN patients, and they all speak highly of him. Let me know if you have any questions.
Good luck with your research about AN treatments, and treatment teams.
Regards,
Rob
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Hehe...Steve's right you may get a little nutty about doing them. I would say all of the above....you're mileage may vary... ;D. You could come out of surgery...or radiation...with no problems whatsoever...your tumor is very similar in size to mine when I was treated. I started having balance problems shortly before treatment and they got worse and stayed that way for years. Finding standup paddleboarding 1.5 years ago has done wonders for getting me back to "normal". I still have bad days but far fewer than before. That's why I'm a bit of a nut and paddle all winter....still fun too...especially if there are waves.
Here's the latest flat water paddle...a test of a new camera my wife got me for my birthday.
http://www.youtube.com/watch?v=cinfmZhJG4w (http://www.youtube.com/watch?v=cinfmZhJG4w)
In effect my AN brought a great new pastime into my life. I found that doing something that required an extraordinary amount of balance (even for someone without a AN) makes normal possible most of the time. I did give up some things I used to do until recently that could be dangerous...downhill skiing, mountain biking. You might have to see how things go before you jump back on a motorcycle or a bike. My golf game went to hell...not sure that will ever come back....your body swaying just a 1/4" during a stroke puts you in the woods. Used to shoot mid 80's....haven't broken 100 since.... >:(
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I'd like to thank everyone for taking the time to help me in offering their experiences and success stories. It means a lot! All of my life I've been althletic, I'm no pro, but it is part of who I am. If someone I knew was to describe me, I believe that some sort of sport would be mentioned. I hope it wouldn't bee too high on the list as there are other things much more important, but it would probably be there. I always knew that my skills would decline as time went on, and believe me, at 46 I'm already seening this happen. It tough now being in the middle of a play and my mind is wondering why my body is a half-step behind. I understand why, I haven't accepted it as I'm just not ready to be sidelined this early. A couple of years ago I joined a 35 and over baseball league and it inspired me to see guys much older that I am still being competitive. I hoped that I would be their "class" in 15 years myself. It's just hard not knowing how much I'll lose due to the AN. I'm the type of person that wants to know what I'm up against to be able to prepare. Not knowing is causing a lot of concern, I'm just hoping I'm worrying too much. Anyway, enough whining! it's helps to purge a little, but I need to make sure it doesn't bring me down to far.
Keep smiling...
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Sanch...if you do find that you have problems after treatment you'll just have to find something that you can enjoy doing that provides vestibular therapy and work your ass off. You'll not only make your own life better but you'll be setting an example for your son that no matter what obstacles life throws at you its worth fighting hard for yourself and those you love. There is a silver lining to this thing... :)
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Someone told me about M*A*R*F years ago ... it stands for Maintain A bsolute Rigid F lexibility..
flexibility being the key word
in other words ...if you find you can not do something you used to do , find a new way to do it or some other
activity to take it's place ...I used to hike the hills of our farm but can't safely do it ... I now walk the track at
school that is flat and smooth and ride over the hills in my truck getting out to look around some and talk
to the cows and trees :o... they don't care if I walk funny and scramble my words ... :D
last few weeks I have been in complaint mode ...I have had trouble with a quack doctor and getting headache
treatment ... but I try to continue on and laugh when I can ... the danger is not in losing what you did before
but stopping everything and not moving on ...
I can no longer sub at school becasue headaches mean I
take naps daily and sometimes I would have to leave ... I can not keep up with a class all day long ... but
we have lost some of our teachers aides and I go in and volunteer my time ...as a volunteer I can leave if I
have to ...or go lay down... I get the satisfaction of helping out ...just with no pay ... so I have not totally
lost my connection to the kids and school ...just adjusted the way I get it ... for me it is therapy and makes me
feel like I am still of use in my community ...
my 9 and 11 year old are playing Upward Basket ball ... I found out the other day that standing up and catching
chest passes from the 9 year old was bad idea... not like she was throwing the ball like a rocket but as I caught
it I was wobbling back and after a few minutes was in danger of toppling over...solution ... stand with back to
wall... I have some problems with the way things looked coming at me with any speed ...depth perception issues ...
but I kept going ... and you will learn as most of us have what you can do and how to adjust things you can
no longer do as you did before ... and you may be a lucky one with little change ...
Wishing you the best
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I think the key point is that everyone's experience and recovery is different, but I believe most have very productive lives post surgery even if they can't do everything they used to do as well as before.
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This las t Saturday was the last Upward games for the year ... February 7th my 9 year old was all but
knocking me over with a ball...during her last practice on Thursday before the games I was passing
with her without the wall as my assistant...and I hit 3 out of 7 free throws... this made me wobble
as the ball left my hands ...not like the ball was holding me up but letting go wobbled me ... and I was
on the roof of a chicken house laying down tin :o
my point ... even if you do come out of treatment with issues , many will resolve themselves...over the
last few months I have rode a roller coaster of emotions as I have dealt with less than acceptable doctor ,
balance issues and headaches... getting headaches somewhat under control is making other big changes
in my recovery... I am hurting less and able to do more and do so more safely and comfortably
just keep looking for answers to what ever comes your way ...people here have told me that over and over
as I have brought problems to the forum ... had to learn it for myself ... be your best advocate ... and any
question or concern you have is ever too small or too silly or too dumb as I have thought of some of mine ...
post what ever you need help with ...chance are good one of us has run into it or something similar ...