Author Topic: almost back to normal  (Read 7003 times)

Dfcman

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almost back to normal
« on: March 06, 2007, 01:47:34 pm »
Ive been post op for over 7 months now.  I am done with all therapy.  Things seem to be about 90-95%.  Except for the facial paralysis.  Which looks better some days then others.  I'm trying to be patient.

Is there anyone who pretty much feels that they are normal again?  I mean besides physically many of us seem to have "scars"emotionally of our AN it seems.  I mean I pretty much feel normal, i'm driving, working full-time, running and pretty much doing everything I did before.  There is still that 5-10% where I get off balance.  Its ususally when im sitting and  I get up too fast or on occasion when i'm twisting or turning fast when I am walking. 

Im asking this because although it is winter here in PA with the spring comin up, I plan to be doing more activity in the outdoors.  Like hiking and moving on uneven surfaces or downward hills.  Maybe even some wading.  I kinda wonder what all this will be like?  Do you think my experiences will get better as I do it more, or do you think i'm SOL with most of that stuff?   I kinda want to know your expereinces with this.  I mean you see all those commercials of herpes where they are bikeriding, mt climbing, hiking etc etc...thats kind of a joke, but I mean can you still do all those things with a vanished vestibular nerve??

I do appreciate the fact that i'm doing so well, and I hate being told what I CANNOT do!  Hate it!  Do you think this 90-95% will ever be near 100%?  I dont want to be spoiled or nothin, its just human nature to question this.
« Last Edit: March 06, 2007, 01:52:03 pm by Dfcman »
Son of Chrissmom
23 Years Old
AIM is the best way to contact me
5.3 x 4 cm tumor removed by surgery(2 times)
Dr. Arriaga and Dr. Baghai Pittsburgh Allegheny Hospital
Post Op as of 7/20/06

Pembo

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Re: almost back to normal
« Reply #1 on: March 06, 2007, 01:58:53 pm »
I'm almost 3 yrs post op and facial recovery is a very slow process but I still see improvement.

As for the off -balance, it continues to get better as well. There are times when I still get off balance. We went to the beach 1 year after surgery and then again 2 years after. The first year walking in the ocean was very tough, the next year it was much easier.  So yes, it will continue to get better as for 100%...well you are missing a nerve so maybe 99%?! :)
Surgery June 3, 2004, University Hospitals Cleveland, BAHA received in 2005, Facial Therapy at UPMC 2006

ppearl214

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Re: almost back to normal
« Reply #2 on: March 06, 2007, 03:22:33 pm »
Dfcman

If I was normal.. or my life was normal.. heck, I'd be boring! :D

I accept what I must as life has certainly thrown me/us a bowl of cherry pits (for all you that remember, Erma Bombeck.....), I accept what I must. I'm thrilled that you are doing so well... and with the therapy you have had, with mind "retraining" of balance and hearing, with positive attitude... heck, go for the bike ridiing, the mt climbing, hiking, etc.  To me, I never say never... anything you want is within your grasp as long as you work for it... and it may be a little bit difficult to achieve it, but the hard work can pay off. Hang tough! I love your spirit! :)

Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Chambo

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Re: almost back to normal
« Reply #3 on: March 06, 2007, 04:50:56 pm »
Ive been post op for over 7 months now.  I am done with all therapy.  Things seem to be about 90-95%.  Except for the facial paralysis.  Which looks better some days then others.  I'm trying to be patient.

Is there anyone who pretty much feels that they are normal again?  I mean besides physically many of us seem to have "scars"emotionally of our AN it seems.  I mean I pretty much feel normal, i'm driving, working full-time, running and pretty much doing everything I did before.  There is still that 5-10% where I get off balance.  Its ususally when im sitting and  I get up too fast or on occasion when i'm twisting or turning fast when I am walking. 

Im asking this because although it is winter here in PA with the spring comin up, I plan to be doing more activity in the outdoors.  Like hiking and moving on uneven surfaces or downward hills.  Maybe even some wading.  I kinda wonder what all this will be like?  Do you think my experiences will get better as I do it more, or do you think i'm SOL with most of that stuff?   I kinda want to know your expereinces with this.  I mean you see all those commercials of herpes where they are bikeriding, mt climbing, hiking etc etc...thats kind of a joke, but I mean can you still do all those things with a vanished vestibular nerve??

I do appreciate the fact that i'm doing so well, and I hate being told what I CANNOT do!  Hate it!  Do you think this 90-95% will ever be near 100%?  I dont want to be spoiled or nothin, its just human nature to question this.

Dfcman, I'm with you. I am 28 so slightly older than you and had a 3.5cm AN removed via Trans-lab about 8 months ago.

Like you, I now actually feel close to 100%. My facial paralysis is still recovering however I am always seeing improvement which gives me comfort. My mouth is nearly back to normal and I am now fully blinking without eye drops (it was a huge day about 1 month ago when my tear ducts kicked in!!). My brow has just started moving but is still very weak. Symmetry has always been good.

I am now running 3 times a week and am training for a 15km fun (?!) run in April. I did the same run last year with a golf ball tumor in my head in 70 minutes (feeling nauseous the entire way!). I am looking forward to feeling much more comfortable in the run this time round. I feel much fitter and not throwing up after every run is gold! I didn't think i'd be able to do the run about 2 months ago. It's amazing the recovery spurts you go through.

I am now engaged and living life to the full. We are going to Ayres Rock in Easter and I look forward to climbing the rock! I am way more active than I was pre-surgery. I thought I had chronic fatigue when I had my AN... I was actually half glad when diagnosed. With much more energy now, my quality of life has actually improved...
3.5cm+ LS AN fully removed via Translab surgery on 28 June 2006.
Prof Kaye (Neuro)/Mr Briggs (ENT) at Royal Melbourne Hospital (Melbourne, Australia).
1st post surgery MRI (Feb 07) revealed NO regrowth/residual.
d.o.b. 5 Oct 1978

Dfcman

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Re: almost back to normal
« Reply #4 on: March 06, 2007, 05:22:32 pm »
I guess these things are what make us who we are.  I forgot to mention I had the anastamosis jump graft whatever thingy in October.  My face feels really funny.  Like it feels awkward, like I cant even really sleep on that side, at least not for more than a lil while.  I kinda wonder if the reason my face feels so weird is because its the nerves regenerating.  I dunno if its the nerves regenerating normallly or if its because of the anastamosis.  I dunno.  I'm trying to be patient.  Its just that my face had quite a bit of character and I was sorta well known for making comical reactions.  People take me too seriously anymore especially cause I cant smile.   :-\  Alot of ppl are tellin me its getting better.  I dunno, maybe sometimes it looks better than others but its hard to tell when its getting better.

Anyways im really looking forward to this spring.  I dont plan on letting anything stop me.  Im still gonna do all what I mentioned.

Chambo, i'm glad to see life is going so well for you too.  You should really post on here more as an inspiration and hope for others.  By the way how do you know when your tear ducts kick in?  Sometimes my eye feels wet and I think ive even wiped a littlle bit of tears from it..but I dunnno maybe they are working and my eye still drys out cuz it doesnt always close right.  Its not always dry, its like every other day.  Semi-Daily.
Son of Chrissmom
23 Years Old
AIM is the best way to contact me
5.3 x 4 cm tumor removed by surgery(2 times)
Dr. Arriaga and Dr. Baghai Pittsburgh Allegheny Hospital
Post Op as of 7/20/06

Chambo

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Re: almost back to normal
« Reply #5 on: March 06, 2007, 05:49:36 pm »
Chambo, i'm glad to see life is going so well for you too.  You should really post on here more as an inspiration and hope for others.  By the way how do you know when your tear ducts kick in?  Sometimes my eye feels wet and I think ive even wiped a littlle bit of tears from it..but I dunnno maybe they are working and my eye still drys out cuz it doesnt always close right.  Its not always dry, its like every other day.  Semi-Daily.


Will try and post more mate! Cheers. I dunno if it's my tear ducts working (i too at times get the so called "crocodile" tears... don't know why they're called this?!), however, one day i was using eye drops about every 30 seconds, and the next day on my walk to work (I walk to work in Melbourne's CBD) I didn't need to use eye drops once (!) and ever since I still haven't had to use drops. I tape my eye down at night when I sleep for precautionary reasons (I also use the thick eye gel to clean the eye overnight).

This said, my neuro surgeon recommended a botox injection into the eye lid post op to "close the eye" for 3 - 6 months. The botox leaked into other eye muscles (incl the eye itself causing temporary double vision) and might have affected the tear duct muscles(?). It takes 6 months + for botox to get out of your system so may be together with my nerve regeneration that's why things are starting to work again. Because of the botox injection, I basically taped shut my eye for about 6 months. Although not ideal, it was actually a blessing in disguise as my eye has been perfectly protected.

Patience and optimism is the key.
« Last Edit: March 06, 2007, 06:43:48 pm by Chambo »
3.5cm+ LS AN fully removed via Translab surgery on 28 June 2006.
Prof Kaye (Neuro)/Mr Briggs (ENT) at Royal Melbourne Hospital (Melbourne, Australia).
1st post surgery MRI (Feb 07) revealed NO regrowth/residual.
d.o.b. 5 Oct 1978

Jeanlea

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Re: almost back to normal
« Reply #6 on: March 06, 2007, 06:54:11 pm »
I had my translab procedure 18 months ago today.  I feel nearly back to normal except for the facial paralysis. Even that is showing some improvement.  Last summer I was fairly active outside.  Even though I'm 43 I was out riding bikes, kayaking in Lake Superior, and wading in the water with all of the rocks.  Now I'm running to get in shape for a 5K race this summer.  I am not as motivated as Chambo!!  Last summer I was out of the roof of my house cleaning out the gutters.  Had to crawl out the window to get on the porch roof.  There really isn't anything that I can't do except jump in the water when I'm swimming.  One day I hope that my eye will blink again.

Have fun this summer. 

Jean
translab on 3.5+ cm tumor
September 6, 2005
Drs. Friedland and Meyer
Milwaukee, WI
left-side facial paralysis and numbness
TransEar for SSD

Obita

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Re: almost back to normal
« Reply #7 on: March 06, 2007, 07:49:24 pm »
Hi Chris:

For someone who has been what you have been through, I would say that your being 90 to 95% is remarkable to say the least.  You are one strong and determined guy!!

Write to Denise.  She had the 12/7 jump in July and her face is really starting to rock and roll.  Patience and more patience is required after the jump.  Her Dr. told her that she will really notice results by the one year mark.

I am almost three years post op and I still have a little trouble on uneven ground.  On my yearly trip up to the Lake Superior shores, I like using a walking stick.  I didn't have one that first year and it was tough walking on the rocks.  Then again, everything was a little tougher that first year post op. 

Good luck to you, Kathy
Kathy - Age 54
2.5 cm translab May '04
University of Minnesota - Minneapolis
Dr. Sam Levine - Dr. Stephen Haines

Dfcman

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Re: almost back to normal
« Reply #8 on: March 06, 2007, 09:17:10 pm »
is there a way of finding people who come to this forum other than when they write a post???
Son of Chrissmom
23 Years Old
AIM is the best way to contact me
5.3 x 4 cm tumor removed by surgery(2 times)
Dr. Arriaga and Dr. Baghai Pittsburgh Allegheny Hospital
Post Op as of 7/20/06

Jeanlea

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Re: almost back to normal
« Reply #9 on: March 06, 2007, 09:26:33 pm »
Go to the main ANA page, look down on the bottom, and where it says the number of members.  Click on the number and it will bring you to a listing of all the members.

Jean
translab on 3.5+ cm tumor
September 6, 2005
Drs. Friedland and Meyer
Milwaukee, WI
left-side facial paralysis and numbness
TransEar for SSD

Dfcman

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Re: almost back to normal
« Reply #10 on: March 06, 2007, 10:10:58 pm »
thanks Jean, I got it!  :)
Son of Chrissmom
23 Years Old
AIM is the best way to contact me
5.3 x 4 cm tumor removed by surgery(2 times)
Dr. Arriaga and Dr. Baghai Pittsburgh Allegheny Hospital
Post Op as of 7/20/06

robinm

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Re: almost back to normal
« Reply #11 on: March 07, 2007, 01:46:56 am »
Hey Chriss,

Nice to hear that you are recovering well. Like you I am also 22 yrs old. I had my AN removed on sept. 06. Fortunately, I didn't have to go through post surgical complications.  But, I am deaf on my AN side. I, actually wanted to ask what you are doing for your one sided deafness. Your mother had mentioned about Starkey's product, but I didn't really get her. Please let me know more about the product or other methods you are doing for your single sided deafness. Hey, r u in college?..have a great spring break!!

Robin

Jim Scott

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Re: almost back to normal
« Reply #12 on: March 07, 2007, 03:52:25 pm »
Dfcman:

Interesting thread based on a reasonable query.  Allow me to add my comments.

I'm 9 months post-op (see my signature for details) and consider myself 'back to normal' - or at least very close to it.  My wife says I'm about 95% 'normal'.  I believe that 95% is probably as good as I'm going to get, and that's just fine with me.  Considering that a year ago, I had serious balance problems, severe loss of appetite (I lost 30 pounds) and stabbing pains on one side of my skull, I'm good.  I had few complications following my surgery and radiation treatment and, although I'm not as physically active as some of the younger folks who post here, I do get out a lot.  In the warm weather - May through September, here in the northeast - I like to be fairly active, if not strenuously so.  I love to play mini-golf with my wife and (adult) son.  He's very good.  I'm fair.  Scores aside, where they belong, the putting and walking involved are invigorating but well within my physical capacity.  I'm doing everything I was doing before my AN symptoms kicked in and alerted me that something was terribly wrong.  I have a bit less stamina, probably due more to my age than my AN, and my balance is a bit tenuous at times, but not often enough to be a problem.  My awareness of that limitation keeps me from getting into situations where I might fall or otherwise look stupid and as other posters have mentioned, post-op, balance gets better as time goes on. 

From reading the posts here, I believe that the emotional 'scars' of the 'AN experience' differ greatly for each individual.  Some folks seem to be emotionally crippled by their AN, especially if post-op complications intrude on their return to any kind of normalcy, which happens, unfortunately.  That situation is fairly easy to understand and sympathize with.  All the positive thinking anyone does won't necessarily change some physical conditions related to acoustic neuroma tumors and their removal.  Of course, the fewer complications experienced and the quicker one's recuperation, the easier it is to deal with the experience, emotionally.

However, I still believe that we should not allow our physical condition, no matter how difficult, to define us.  My wife has suffered with severe spinal problems (12 operations in 15 years) yet few people outside of her immediate family have any idea how much pain she endures or how much of a struggle it is for her some days just to function 'normally'.  She refuses to 'give in' to her physical challenges.  Yes, she takes numerous medications (none are narcotic) but she functions mostly on a determination not to waste her time on earth complaining and sitting in a chair or lying in a bed.   I had pretty much the same attitude regarding my AN. I did what I had to do (surgery, radiation) and took it easy while I recovered my strength but as soon as I felt better, I slowly but surely reclaimed my former life by doing everything I did before, with the exception of heavy lifting, which I was happy to abandon.  ;)

Chris, I think that in your case, with your youth and good attitude, you'll eventually be about 99% back to normal.  Remember: time heals.

Jim

 

4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

Dfcman

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Re: almost back to normal
« Reply #13 on: March 07, 2007, 05:24:32 pm »
well Jim it sounds like you're doin pretty good too, considering the size of yours was rather large as well.  You must be in great physical shape to have recovered so well.

Robin,  Currently I am not in college but will be re-attending in the fall.  I was looking at some different hearing aids, but really I am doing ok without one. I really only seem to have problems where certain noises tend to overpower the other in which I cant hear, when a loud noise is present, in a bar or public place. I also have trouble hearing the direction in which sound is coming from.  For example, I work in a grocery store, so when people call my name at one end,  I tend to look the other way at times.  Certain things its better that I only have one good ear.  I seem to hear better clarity in music.  Like a record sounding much better than a cd or mp3.  Plus, it makes it better for when you want to have "selective hearing".  Like "oh, I didnt hear you say you wanted me to take the trash out"

I hate being dependent on things too....cause then, without them you're lost.  Thats why I try NOT to take any type of drugs and use glasses only when I really really need them.
Son of Chrissmom
23 Years Old
AIM is the best way to contact me
5.3 x 4 cm tumor removed by surgery(2 times)
Dr. Arriaga and Dr. Baghai Pittsburgh Allegheny Hospital
Post Op as of 7/20/06

Battyp

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Re: almost back to normal
« Reply #14 on: March 07, 2007, 05:52:51 pm »
Chris you sound like you're doing awesome!  You sound so positive!  I know you had a rough time as we were here with your mom rooting for you!  I'm 18 plus out now and honestly after my first 14 mos I have had leaps and bounds in my recovery.  I know I'm adapting to the throat problem I have and will always have. I'm back in school as of yesterday working on a masters program and able to get out and do more than I used to.  I say by spring you'll by kyaking if you want to!  The hiking will be great to help your balance recover even more.  Just listen to your body and rest when you need to! (once a mom always a mom  LOL)  Keep doing what you're doing!