Guest guest Posted August 11, 2000 Report Share Posted August 11, 2000 THANK YOU! I do force myself, I'm a bit adverturesome by nature; I had big hopes of going skiing this year,;but you can't even hit the bunny slope if you can't stand up on the skiis! I asked the PT about it, and she said, one step at a time; let's get you walking, then we will think about skiing.!Marie Re: Balance >Oh lordy Marie, i think we all can pass for drunks 99% of time. ok, for me, AN >surgery #1 was a cake walk. but AN surgery #2 left me unable to balance at all. >it took a good year, or more to see real improvement, but it never as goodas >prior to surgery. what helped me was forcing myself to do things thatwere >difficult, lke walking in dark, crowded busy places etc. but be careful!!!!! >dont letthe practicve hurt you by falling. it takesthe brain a long time to >learn to compensate.... > >Marie Drew wrote: > >> I would like a little crewbie " been there, done that " type of advice. Since >> my surgery, my balance is MUCH worse than ever. It has now been 3 months, >> and does not seem to be getting any better. Have any of you experienced >> this type of situation and did in ever improve? >> Marie Drew > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2000 Report Share Posted August 11, 2000 Hi , if my balance gets back to as good as yours, I will be happy! I just wanted to know if it gets better; I don't expect it to be good, just so I can walk without a cane. marie Balance > >I would like a little crewbie " been there, done that " type of advice. Since >my surgery, my balance is MUCH worse than ever. It has now been 3 months, >and does not seem to be getting any better. Have any of you experienced >this type of situation and did in ever improve? >Marie Drew > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2000 Report Share Posted August 12, 2000 Okay, since all of you brought the subject up, I have a question. Well, first, let me start by how things were explained to me in Nov. when my son had surgery at HEI. The way our bodies stay balanced depends on three things. Of course, the balance nerve, our eyes, and our limbs, mostly our arms. The belief at HEI is to remove the balance nerve during AN removal and you remove the possiblility of regrowth. Which is wonderful. But now, the second AN is getting removed and no one has told me whether they are going to take that one out too. I guess it probably is up to me to decide, that is why I am asking all of you. Have you had both removed and that is why your balance is off? I know we have had discussion a while back about all this but, hey, I didn't bring it up. hahaha ! Because Robby is legally blind, his eyes don't help him much for balance so I guess the only reason he is standing is the one last balance nerve. So if you could all help me out here, I would really appreciate it. I should mention that he has not had any balance problems since removing the an and the balance nerve and I would like to keep it that way. Thanks. Diane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2000 Report Share Posted August 12, 2000 Hi Marie, I and I think many of us. Experienced this. The balance nerve get's clobbered as well as the hearing nerve. So yeah, your balance does get worse. A little warning from my own experience, be careful walking at night or in dark places. Mark ----Original Message Follows---- Reply-To: NF2_Crewegroups To: " 'CREW' " <NF2_Crewegroups> Subject: Balance Date: Fri, 11 Aug 2000 22:18:49 -0400 I would like a little crewbie " been there, done that " type of advice. Since my surgery, my balance is MUCH worse than ever. It has now been 3 months, and does not seem to be getting any better. Have any of you experienced this type of situation and did in ever improve? Marie Drew ________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2000 Report Share Posted August 12, 2000 Hi Charlotte, I have that experience too. When I'm tired or didn't enough sleep the night before, my balance seems to get worse. Go figure.... Mark ----Original Message Follows---- Reply-To: NF2_Crewegroups To: <NF2_Crewegroups> Subject: Re: Balance Date: Fri, 11 Aug 2000 19:43:29 -0700 Yes, Marie, my balance got MUCH worse, and it seemed the more tired I was (ie. later in the day) the worse it was. I started going to the gym and walking on the treadmill (just walking with my cane was too tiring), and it really did improve! Still have it and it still is worse when I'm tired, but still is MUCH MUCH better. Charlotte Balance > I would like a little crewbie " been there, done that " type of advice. Since > my surgery, my balance is MUCH worse than ever. It has now been 3 months, > and does not seem to be getting any better. Have any of you experienced > this type of situation and did in ever improve? > Marie Drew > > > > ________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2000 Report Share Posted August 12, 2000 Good advice! May I add though to stay on a well lightened path when alone at night? Mark ----Original Message Follows---- move slower, wear running shoes when possible, watch your step (particularly on uneven ground), always use the handrail on steps, etc. ________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2000 Report Share Posted August 12, 2000 Good advice! May I add though to stay on a well lightened path when alone at night? Mark ----Original Message Follows---- move slower, wear running shoes when possible, watch your step (particularly on uneven ground), always use the handrail on steps, etc. ________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2000 Report Share Posted August 12, 2000 your strength and balancewont come back overnight obviously, but you would be suprised at how much these silly exercises help. one of the most frustrating, yet helpful exercises i did went like this: Get down on all 4's (at first this is all i could do, the PT would nudge me slightly and i would have to fight to not to In a message dated 8/12/00 11:45:23 AM Pacific Daylight Time, mcdrew@... writes: << From what I'm reading, I am wonderring if I am doing enough? All I do is lift leg to side for count of five 10 times, then lift it to back ten times, all this with a 4 pound weight on it. Then I sit down and lift left leg (weak side) 20 times. All in all takes me about 10 minutes max; think this is enough? marie >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2000 Report Share Posted August 12, 2000 your strength and balancewont come back overnight obviously, but you would be suprised at how much these silly exercises help. one of the most frustrating, yet helpful exercises i did went like this: Get down on all 4's (at first this is all i could do, the PT would nudge me slightly and i would have to fight to not to In a message dated 8/12/00 11:45:23 AM Pacific Daylight Time, mcdrew@... writes: << From what I'm reading, I am wonderring if I am doing enough? All I do is lift leg to side for count of five 10 times, then lift it to back ten times, all this with a 4 pound weight on it. Then I sit down and lift left leg (weak side) 20 times. All in all takes me about 10 minutes max; think this is enough? marie >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2000 Report Share Posted August 12, 2000 your strength and balancewont come back overnight obviously, but you would be suprised at how much these silly exercises help. one of the most frustrating, yet helpful exercises i did went like this: Get down on all 4's (at first this is all i could do, the PT would nudge me slightly and i would have to fight to not to In a message dated 8/12/00 11:45:23 AM Pacific Daylight Time, mcdrew@... writes: << From what I'm reading, I am wonderring if I am doing enough? All I do is lift leg to side for count of five 10 times, then lift it to back ten times, all this with a 4 pound weight on it. Then I sit down and lift left leg (weak side) 20 times. All in all takes me about 10 minutes max; think this is enough? marie >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2000 Report Share Posted August 12, 2000 grrrrr i hit send, sorry, here goes..... one of the most frustrating, yet helpful exercises i did went like this: Get down on all 4's (at first this is all i could do, the PT would nudge me slightly and i would have to fight to not to topple over, eventually i got stronger and this was getting boring) then she said, okay lift one arm and the opposite leg into the air, oh my god, forget it, i couldnt even do one arm!! but with practice (3 times a dayfor 20 mins) i eventually got stronger, slowly i was able to balance for 10 seconds, then soon 30 and eventually i was down with one leg and one arm in the air and she would nuge me and i wouldnt topple over!!! this whole process took about 6 months and we did both arms and both legs, tody my balance sucks though (10 surgeries in 4 years i had no time to get better) but for that short time my balance was great!!! Freshman year of college, both ANs removed and my new found balance, i would race my friend up and down 8 flights of stairs 2 or 3 times a day (he lived on 2nd floor i was on 10th floor, he hated elevators so we always did stairs) good luck and yah your exercises may seem pointless but youll see they really do help. ohh yah, i used to have aa therapy ball too, just a big ball, that was bouncy but you couldsit on it, really great for strenthing your hips and for balance too. i got mine at a toy store actually and could find it on the web if anyone wants to see thats all, Caren Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2000 Report Share Posted August 12, 2000 grrrrr i hit send, sorry, here goes..... one of the most frustrating, yet helpful exercises i did went like this: Get down on all 4's (at first this is all i could do, the PT would nudge me slightly and i would have to fight to not to topple over, eventually i got stronger and this was getting boring) then she said, okay lift one arm and the opposite leg into the air, oh my god, forget it, i couldnt even do one arm!! but with practice (3 times a dayfor 20 mins) i eventually got stronger, slowly i was able to balance for 10 seconds, then soon 30 and eventually i was down with one leg and one arm in the air and she would nuge me and i wouldnt topple over!!! this whole process took about 6 months and we did both arms and both legs, tody my balance sucks though (10 surgeries in 4 years i had no time to get better) but for that short time my balance was great!!! Freshman year of college, both ANs removed and my new found balance, i would race my friend up and down 8 flights of stairs 2 or 3 times a day (he lived on 2nd floor i was on 10th floor, he hated elevators so we always did stairs) good luck and yah your exercises may seem pointless but youll see they really do help. ohh yah, i used to have aa therapy ball too, just a big ball, that was bouncy but you couldsit on it, really great for strenthing your hips and for balance too. i got mine at a toy store actually and could find it on the web if anyone wants to see thats all, Caren Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2000 Report Share Posted August 12, 2000 Marie: I spent 30 minutes on the treadmill 6 days a week for 3 months. I also spent another 30 minutes a day while there on other weight exercises, but felt like I was dying when thru with an hour! If at home, it wouldn't all have to be at the same time. I've accepted that it will never go away completely, and still use my cane tho if out -- probably depend on it too much, but it gives me more confidence. Charlotte Balance > > > > > >> I would like a little crewbie " been there, done that " type of advice. > >Since > >> my surgery, my balance is MUCH worse than ever. It has now been 3 > months, > >> and does not seem to be getting any better. Have any of you experienced > >> this type of situation and did in ever improve? > >> Marie Drew > >> > >> > >> > >> > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2000 Report Share Posted August 12, 2000 Caren, I had an awful time as well with my PT in 1994 after my third surgery. I remember as you do sweating away trying to stay on top of my knees and arms while my PT barely nudged me. Or being told to pick up something on the opposite side of me!!! That was a lot of work, but those exercises are priceless --- funny suckers though -- help you a ton ! Sally Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2000 Report Share Posted August 12, 2000 Diane, The way it was explained to me was that when you loose one hearing nerve, the brain quickly adjusts to get all the balance signals from the remaining good hearing nerve. The adjustment is never completely 100% but its very close. When you loose both hearing nerves, the brain then adjusts to get signals from the eyes and nerves of touch. However, the adjustment is slow and nowhere near 100%. This is basically what happened to me. Because Robby is legally blind, I haven't a clue as to what his balance would be like. However, I have tried walking with my eyes closed. It is trickly of course, but I can do it. Walking in darkness is very hard too but it can be done. Perhaps your doctors can give you more insight into what I have said. You don't have to " loose " the nerves either. I think mine are still in there but they are damaged so much they are essentially useless. Hope this helps! ---------- From: adonai10@... Sent: Saturday, August 12, 2000 8:50 AM To: NF2_Crewegroups Subject: Re: Balance Because Robby is legally blind, his eyes don't help him much for balance so I guess the only reason he is standing is the one last balance nerve. So if you could all help me out here, I would really appreciate it. I should mention that he has not had any balance problems since removing the an and the balance nerve and I would like to keep it that way. Thanks. Diane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2000 Report Share Posted August 12, 2000 Charlotte, I think you have the right idea about exercises. I spent 6 months in a therapy hospital after my second AN removal. I entered the place in a wheelchair but came out walking reasonably well. The therapists told me 30 to 45 mins per day on a stationary bike was all I needed. More than that would do more harm than good. They said in the '50s people were worked to death when on rehab and it mostly hurt the proccess. ---------- From: fetter Sent: Saturday, August 12, 2000 11:29 AM To: NF2_Crewegroups Subject: Re: Balance Marie: I spent 30 minutes on the treadmill 6 days a week for 3 months. I also spent another 30 minutes a day while there on other weight exercises, but felt like I was dying when thru with an hour! If at home, it wouldn't all have to be at the same time. I've accepted that it will never go away completely, and still use my cane tho if out -- probably depend on it too much, but it gives me more confidence. Charlotte Balance > > > > > >> I would like a little crewbie " been there, done that " type of advice. > >Since > >> my surgery, my balance is MUCH worse than ever. It has now been 3 > months, > >> and does not seem to be getting any better. Have any of you experienced > >> this type of situation and did in ever improve? > >> Marie Drew > >> > >> > >> > >> > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2000 Report Share Posted August 12, 2000 Marie, My balance is not as good as you may think. I was in a wheelchair after my second AN removal in 1986. I did 6 months of rehab (full time) and then another 6 months as an out patient. The balance improved a lot and perhaps improved even more from then to the present time. However, I think I learned to live with poor balance too. When the floors are hard and smooth I can walk unassisted but even thick carpets get tricky at times. In the winter, I generally use a cane unless its dry out. Walking in more than 3 inches of snow can get tricky. If there is ice out, a cane may prevent a good fall. ---------- From: Marie Drew Sent: Friday, August 11, 2000 11:49 PM To: NF2_Crewegroups Subject: Re: Balance Hi , if my balance gets back to as good as yours, I will be happy! I just wanted to know if it gets better; I don't expect it to be good, just so I can walk without a cane. marie Balance > >I would like a little crewbie " been there, done that " type of advice. Since >my surgery, my balance is MUCH worse than ever. It has now been 3 months, >and does not seem to be getting any better. Have any of you experienced >this type of situation and did in ever improve? >Marie Drew > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2000 Report Share Posted August 12, 2000 Marie, My balance is not as good as you may think. I was in a wheelchair after my second AN removal in 1986. I did 6 months of rehab (full time) and then another 6 months as an out patient. The balance improved a lot and perhaps improved even more from then to the present time. However, I think I learned to live with poor balance too. When the floors are hard and smooth I can walk unassisted but even thick carpets get tricky at times. In the winter, I generally use a cane unless its dry out. Walking in more than 3 inches of snow can get tricky. If there is ice out, a cane may prevent a good fall. ---------- From: Marie Drew Sent: Friday, August 11, 2000 11:49 PM To: NF2_Crewegroups Subject: Re: Balance Hi , if my balance gets back to as good as yours, I will be happy! I just wanted to know if it gets better; I don't expect it to be good, just so I can walk without a cane. marie Balance > >I would like a little crewbie " been there, done that " type of advice. Since >my surgery, my balance is MUCH worse than ever. It has now been 3 months, >and does not seem to be getting any better. Have any of you experienced >this type of situation and did in ever improve? >Marie Drew > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2000 Report Share Posted August 12, 2000 Marie, My balance is not as good as you may think. I was in a wheelchair after my second AN removal in 1986. I did 6 months of rehab (full time) and then another 6 months as an out patient. The balance improved a lot and perhaps improved even more from then to the present time. However, I think I learned to live with poor balance too. When the floors are hard and smooth I can walk unassisted but even thick carpets get tricky at times. In the winter, I generally use a cane unless its dry out. Walking in more than 3 inches of snow can get tricky. If there is ice out, a cane may prevent a good fall. ---------- From: Marie Drew Sent: Friday, August 11, 2000 11:49 PM To: NF2_Crewegroups Subject: Re: Balance Hi , if my balance gets back to as good as yours, I will be happy! I just wanted to know if it gets better; I don't expect it to be good, just so I can walk without a cane. marie Balance > >I would like a little crewbie " been there, done that " type of advice. Since >my surgery, my balance is MUCH worse than ever. It has now been 3 months, >and does not seem to be getting any better. Have any of you experienced >this type of situation and did in ever improve? >Marie Drew > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2000 Report Share Posted August 12, 2000 I could be wrong, but I don't think they ask you about it, I thinki they just do it! And also I was told the 3 inputs are the brain, the eyes, and the feet. I have poor vision also, and was told my feet are my only input. I have NO depth perception, which I understand is a common problem with NF2ers. Marie Re: Balance >Okay, since all of you brought the subject up, I have a question. Well, >first, let me start by how things were explained to me in Nov. when my son >had surgery at HEI. The way our bodies stay balanced depends on three >things. Of course, the balance nerve, our eyes, and our limbs, mostly our >arms. The belief at HEI is to remove the balance nerve during AN removal and >you remove the possiblility of regrowth. Which is wonderful. But now, the >second AN is getting removed and no one has told me whether they are going to >take that one out too. I guess it probably is up to me to decide, that is >why I am asking all of you. Have you had both removed and that is why your >balance is off? I know we have had discussion a while back about all this >but, hey, I didn't bring it up. hahaha ! > Because Robby is legally blind, his eyes don't help him much for balance >so I guess the only reason he is standing is the one last balance nerve. So >if you could all help me out here, I would really appreciate it. I should >mention that he has not had any balance problems since removing the an and >the balance nerve and I would like to keep it that way. Thanks. > > Diane > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2000 Report Share Posted August 12, 2000 Hmm, that is a lot more than I am doing. I am going to ask the PT about a treatmill next time I see her. Marie Re: Balance >Marie: I spent 30 minutes on the treadmill 6 days a week for 3 months. I >also spent another 30 minutes a day while there on other weight exercises, >but felt like I was dying when thru with an hour! If at home, it wouldn't >all have to be at the same time. I've accepted that it will never go away >completely, and still use my cane tho if out -- probably depend on it too >much, but it gives me more confidence. Charlotte > > Balance >> > >> > >> >> I would like a little crewbie " been there, done that " type of advice. >> >Since >> >> my surgery, my balance is MUCH worse than ever. It has now been 3 >> months, >> >> and does not seem to be getting any better. Have any of you >experienced >> >> this type of situation and did in ever improve? >> >> Marie Drew >> >> >> >> >> >> >> >> >> > >> > >> > >> > >> > >> >> >> >> > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2000 Report Share Posted August 12, 2000 From what I'm reading, I am wonderring if I am doing enough? All I do is lift leg to side for count of five 10 times, then lift it to back ten times, all this with a 4 pound weight on it. Then I sit down and lift left leg (weak side) 20 times. All in all takes me about 10 minutes max; think this is enough? marie Balance >> >>I would like a little crewbie " been there, done that " type of advice. >Since >>my surgery, my balance is MUCH worse than ever. It has now been 3 months, >>and does not seem to be getting any better. Have any of you experienced >>this type of situation and did in ever improve? >>Marie Drew >> >> >> >> >> >> >> >> >> >> >> > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2000 Report Share Posted August 12, 2000 From what I'm reading, I am wonderring if I am doing enough? All I do is lift leg to side for count of five 10 times, then lift it to back ten times, all this with a 4 pound weight on it. Then I sit down and lift left leg (weak side) 20 times. All in all takes me about 10 minutes max; think this is enough? marie Balance >> >>I would like a little crewbie " been there, done that " type of advice. >Since >>my surgery, my balance is MUCH worse than ever. It has now been 3 months, >>and does not seem to be getting any better. Have any of you experienced >>this type of situation and did in ever improve? >>Marie Drew >> >> >> >> >> >> >> >> >> >> >> > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2000 Report Share Posted August 12, 2000 Marie, It can't be " just the feet " . If it were, then why does a cane help people??? Anyone who has used a cane knows you dont use it as a support. ---------- From: Marie Drew Sent: Saturday, August 12, 2000 2:40 PM To: NF2_Crewegroups Subject: Re: Balance I could be wrong, but I don't think they ask you about it, I thinki they just do it! And also I was told the 3 inputs are the brain, the eyes, and the feet. I have poor vision also, and was told my feet are my only input. I have NO depth perception, which I understand is a common problem with NF2ers. Marie Re: Balance >Okay, since all of you brought the subject up, I have a question. Well, >first, let me start by how things were explained to me in Nov. when my son >had surgery at HEI. The way our bodies stay balanced depends on three >things. Of course, the balance nerve, our eyes, and our limbs, mostly our >arms. The belief at HEI is to remove the balance nerve during AN removal and >you remove the possiblility of regrowth. Which is wonderful. But now, the >second AN is getting removed and no one has told me whether they are going to >take that one out too. I guess it probably is up to me to decide, that is >why I am asking all of you. Have you had both removed and that is why your >balance is off? I know we have had discussion a while back about all this >but, hey, I didn't bring it up. hahaha ! > Because Robby is legally blind, his eyes don't help him much for balance >so I guess the only reason he is standing is the one last balance nerve. So >if you could all help me out here, I would really appreciate it. I should >mention that he has not had any balance problems since removing the an and >the balance nerve and I would like to keep it that way. Thanks. > > Diane > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2000 Report Share Posted August 12, 2000 Just want to say thanks to everyone for their experiences with balance/exercise; I sent my PT an e mail, asking if I should not get a tread mill! I just kind of think I should be doing more, but she always tells me to cool it. Marie Drew Quote Link to comment Share on other sites More sharing options...
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