Guest guest Posted September 27, 2000 Report Share Posted September 27, 2000 Jennette, I think I'm probably the exception, but I have been told that my AN's have grown directly out of the acoustic nerves. The AN on the right stole my hearing in that ear when it was quite small. The left one is still small and has not been removed. Despite what those docs say, i don't think there are any guarantees if the balance nerve is removed - just a *reduced* risk of deafness. My 2 cents, A. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2000 Report Share Posted September 27, 2000 Jennette, I think I'm probably the exception, but I have been told that my AN's have grown directly out of the acoustic nerves. The AN on the right stole my hearing in that ear when it was quite small. The left one is still small and has not been removed. Despite what those docs say, i don't think there are any guarantees if the balance nerve is removed - just a *reduced* risk of deafness. My 2 cents, A. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2000 Report Share Posted September 27, 2000 Jennette, I think I'm probably the exception, but I have been told that my AN's have grown directly out of the acoustic nerves. The AN on the right stole my hearing in that ear when it was quite small. The left one is still small and has not been removed. Despite what those docs say, i don't think there are any guarantees if the balance nerve is removed - just a *reduced* risk of deafness. My 2 cents, A. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2000 Report Share Posted September 27, 2000 I was told that the balance nerve can eventually repair itself (no guarantee but typcally) where as the hearing nerve allows no grace. I do not know the common term for the vestibular nerve. Good question. Anita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2000 Report Share Posted September 27, 2000 I was told that the balance nerve can eventually repair itself (no guarantee but typcally) where as the hearing nerve allows no grace. I do not know the common term for the vestibular nerve. Good question. Anita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2000 Report Share Posted September 27, 2000 I was told that the balance nerve can eventually repair itself (no guarantee but typcally) where as the hearing nerve allows no grace. I do not know the common term for the vestibular nerve. Good question. Anita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2000 Report Share Posted September 27, 2000 > I hope you can see this Pic Jennette it will show you where the different nerves are. If you can't then get a med book that shows the ear and its nerves. > 1. Why do we continue to call our bilateral tumors AN's, aren't they> technically vestibular schwannomas (VS's)?? Short answer is YES. When I first met my neurosurgeon I called the tumour a AN. He very quickly corrected me by say that it is a VS tumour and that all these particular tumours start on the VS nerve irregardless where the tumour starts. He is a Teaching Neuro Prof.... > 2. What relationship does the acoustic nerve play on the vestibular nerve?> Are they one or are they two "very" close nerves? HEI feels that by> removing the vestibular nerve they can prevent regrowths, right? So if> hearing was saved (acoustic) and the vestibular was removed, does that> guarantee hearing forever? Good Q.. First part of the Q. 1) the VS nerve and the Cochlea nerve are two seperate nerves. 2) That start from two different parts of the internal workings of the ear. 3) Tthe VS nerve enters the Cochlear nerve sheath before it leaves the inside of the bony tissue of the skull. Once the two nerves are inside the one nerve sheath they are still two seperate nerves. 4) A tumour can start anywere along the VS nerve. 5) Yes it could be removed --- BUT--- the tumour would have to start and be discovered before it entered the Cochlear nerve sheath, this is more likely to be found if the child who is from a NF2 family, or in a spontainious mutation and when the first one was discovered the second side is either very small or has not started growing . 6) and you should no by now that there are no guaratees with NF2..... ~[|)))))) 3. Is the vestibular nerve the balance nerve? Why then do some people have great balance even after one or both sides removed? And like Earl, it even improved after his surgeries? (he went to HEI too) The VS nerve IS the balance nerve. As for the rest of the Q. I throw my hands in the air. I had one out and walked like a drunk ever since. The second one was fried and no improvement........ Bri........an Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2000 Report Share Posted September 27, 2000 > I hope you can see this Pic Jennette it will show you where the different nerves are. If you can't then get a med book that shows the ear and its nerves. > 1. Why do we continue to call our bilateral tumors AN's, aren't they> technically vestibular schwannomas (VS's)?? Short answer is YES. When I first met my neurosurgeon I called the tumour a AN. He very quickly corrected me by say that it is a VS tumour and that all these particular tumours start on the VS nerve irregardless where the tumour starts. He is a Teaching Neuro Prof.... > 2. What relationship does the acoustic nerve play on the vestibular nerve?> Are they one or are they two "very" close nerves? HEI feels that by> removing the vestibular nerve they can prevent regrowths, right? So if> hearing was saved (acoustic) and the vestibular was removed, does that> guarantee hearing forever? Good Q.. First part of the Q. 1) the VS nerve and the Cochlea nerve are two seperate nerves. 2) That start from two different parts of the internal workings of the ear. 3) Tthe VS nerve enters the Cochlear nerve sheath before it leaves the inside of the bony tissue of the skull. Once the two nerves are inside the one nerve sheath they are still two seperate nerves. 4) A tumour can start anywere along the VS nerve. 5) Yes it could be removed --- BUT--- the tumour would have to start and be discovered before it entered the Cochlear nerve sheath, this is more likely to be found if the child who is from a NF2 family, or in a spontainious mutation and when the first one was discovered the second side is either very small or has not started growing . 6) and you should no by now that there are no guaratees with NF2..... ~[|)))))) 3. Is the vestibular nerve the balance nerve? Why then do some people have great balance even after one or both sides removed? And like Earl, it even improved after his surgeries? (he went to HEI too) The VS nerve IS the balance nerve. As for the rest of the Q. I throw my hands in the air. I had one out and walked like a drunk ever since. The second one was fried and no improvement........ Bri........an Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2000 Report Share Posted September 27, 2000 > I hope you can see this Pic Jennette it will show you where the different nerves are. If you can't then get a med book that shows the ear and its nerves. > 1. Why do we continue to call our bilateral tumors AN's, aren't they> technically vestibular schwannomas (VS's)?? Short answer is YES. When I first met my neurosurgeon I called the tumour a AN. He very quickly corrected me by say that it is a VS tumour and that all these particular tumours start on the VS nerve irregardless where the tumour starts. He is a Teaching Neuro Prof.... > 2. What relationship does the acoustic nerve play on the vestibular nerve?> Are they one or are they two "very" close nerves? HEI feels that by> removing the vestibular nerve they can prevent regrowths, right? So if> hearing was saved (acoustic) and the vestibular was removed, does that> guarantee hearing forever? Good Q.. First part of the Q. 1) the VS nerve and the Cochlea nerve are two seperate nerves. 2) That start from two different parts of the internal workings of the ear. 3) Tthe VS nerve enters the Cochlear nerve sheath before it leaves the inside of the bony tissue of the skull. Once the two nerves are inside the one nerve sheath they are still two seperate nerves. 4) A tumour can start anywere along the VS nerve. 5) Yes it could be removed --- BUT--- the tumour would have to start and be discovered before it entered the Cochlear nerve sheath, this is more likely to be found if the child who is from a NF2 family, or in a spontainious mutation and when the first one was discovered the second side is either very small or has not started growing . 6) and you should no by now that there are no guaratees with NF2..... ~[|)))))) 3. Is the vestibular nerve the balance nerve? Why then do some people have great balance even after one or both sides removed? And like Earl, it even improved after his surgeries? (he went to HEI too) The VS nerve IS the balance nerve. As for the rest of the Q. I throw my hands in the air. I had one out and walked like a drunk ever since. The second one was fried and no improvement........ Bri........an Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2000 Report Share Posted September 28, 2000 Jennette, Here's my take on the questions. 1. Why do we continue to call our bilateral tumors AN's, aren't they technically vestibular schwannommas (VS's)?? A: It's easier to spell and say AND when you call it an acoustic neuroma you don't have to explain to the average doctor that it impacts hearing. It's a time saver. :-) 2. What relationship does the acoustic nerve play on the vestibular nerve? Are they one or are they two " very " close nerves? HEI feels that by removing the vestibular nerve they can prevent regrowths, right? So if hearing was saved (acoustic) and the vestibular was removed, does that guarantee hearing forever? A: As I understand it, these two nerves start out separate and come together in a " Y " shape. Someone else correct me if I'm wrong, but that's the way I got it from a neurosurgeon's explanation. It doesn't guarantee hearing forever if the vestibular nerve is removed though I think it's a great theory. I recently talked to someone at HEI. They told me of a case with a kid who had both of his ANs removed (and apparently also the vestibular nerve since it was done there) and tumors grew on both cochlear nerves. NF2 is creative and persistant isn't it?! By the way, they did remove the tumors from the cochlear nerves and saved the hearing on that round too. Makes you wonder if the body of a person with NF2 " thinks " that functional hearing is like an alien invasion and must be stopped one way or another. 3. Is the vestibular nerve the balance nerve? Why then do some people have great balance even after one or both sides removed? And like Earl, it even improved after his surgeries? (he went to HEI too) Yes, the vestibular nerve is the balance nerve, but it isn't the only thing that impacts balance. Past discussion here has talked about how your eyes, points of contact with land, etc. also impact balance. I would add that your muscles in your legs, hips, and back probably impact it more than we recognize. Sometimes if you have a mild muscle atrophy due to a tumor, you may not realize that you have it, but it can still cause you to walk a bit more off-balance than if you didn't have the problem. Since Fred's spinal surgery last year, if he stands up using his walker, he leans much farther forward and to one side than he used to. To our knowledge, the ANs haven't changed during this time period, so I think that says this is muscle related. That's my theory. Will be interested in what others have to say on these subjects. ...Donna (Who is still available to collect hearing aid donations, but please don't bother to donate the in-the-ear type cuz remanufacturing them makes it not worthwhile. BTEs are good, though.) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2000 Report Share Posted September 28, 2000 Jennette, Here's my take on the questions. 1. Why do we continue to call our bilateral tumors AN's, aren't they technically vestibular schwannommas (VS's)?? A: It's easier to spell and say AND when you call it an acoustic neuroma you don't have to explain to the average doctor that it impacts hearing. It's a time saver. :-) 2. What relationship does the acoustic nerve play on the vestibular nerve? Are they one or are they two " very " close nerves? HEI feels that by removing the vestibular nerve they can prevent regrowths, right? So if hearing was saved (acoustic) and the vestibular was removed, does that guarantee hearing forever? A: As I understand it, these two nerves start out separate and come together in a " Y " shape. Someone else correct me if I'm wrong, but that's the way I got it from a neurosurgeon's explanation. It doesn't guarantee hearing forever if the vestibular nerve is removed though I think it's a great theory. I recently talked to someone at HEI. They told me of a case with a kid who had both of his ANs removed (and apparently also the vestibular nerve since it was done there) and tumors grew on both cochlear nerves. NF2 is creative and persistant isn't it?! By the way, they did remove the tumors from the cochlear nerves and saved the hearing on that round too. Makes you wonder if the body of a person with NF2 " thinks " that functional hearing is like an alien invasion and must be stopped one way or another. 3. Is the vestibular nerve the balance nerve? Why then do some people have great balance even after one or both sides removed? And like Earl, it even improved after his surgeries? (he went to HEI too) Yes, the vestibular nerve is the balance nerve, but it isn't the only thing that impacts balance. Past discussion here has talked about how your eyes, points of contact with land, etc. also impact balance. I would add that your muscles in your legs, hips, and back probably impact it more than we recognize. Sometimes if you have a mild muscle atrophy due to a tumor, you may not realize that you have it, but it can still cause you to walk a bit more off-balance than if you didn't have the problem. Since Fred's spinal surgery last year, if he stands up using his walker, he leans much farther forward and to one side than he used to. To our knowledge, the ANs haven't changed during this time period, so I think that says this is muscle related. That's my theory. Will be interested in what others have to say on these subjects. ...Donna (Who is still available to collect hearing aid donations, but please don't bother to donate the in-the-ear type cuz remanufacturing them makes it not worthwhile. BTEs are good, though.) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2000 Report Share Posted September 28, 2000 Jennette, Here's my take on the questions. 1. Why do we continue to call our bilateral tumors AN's, aren't they technically vestibular schwannommas (VS's)?? A: It's easier to spell and say AND when you call it an acoustic neuroma you don't have to explain to the average doctor that it impacts hearing. It's a time saver. :-) 2. What relationship does the acoustic nerve play on the vestibular nerve? Are they one or are they two " very " close nerves? HEI feels that by removing the vestibular nerve they can prevent regrowths, right? So if hearing was saved (acoustic) and the vestibular was removed, does that guarantee hearing forever? A: As I understand it, these two nerves start out separate and come together in a " Y " shape. Someone else correct me if I'm wrong, but that's the way I got it from a neurosurgeon's explanation. It doesn't guarantee hearing forever if the vestibular nerve is removed though I think it's a great theory. I recently talked to someone at HEI. They told me of a case with a kid who had both of his ANs removed (and apparently also the vestibular nerve since it was done there) and tumors grew on both cochlear nerves. NF2 is creative and persistant isn't it?! By the way, they did remove the tumors from the cochlear nerves and saved the hearing on that round too. Makes you wonder if the body of a person with NF2 " thinks " that functional hearing is like an alien invasion and must be stopped one way or another. 3. Is the vestibular nerve the balance nerve? Why then do some people have great balance even after one or both sides removed? And like Earl, it even improved after his surgeries? (he went to HEI too) Yes, the vestibular nerve is the balance nerve, but it isn't the only thing that impacts balance. Past discussion here has talked about how your eyes, points of contact with land, etc. also impact balance. I would add that your muscles in your legs, hips, and back probably impact it more than we recognize. Sometimes if you have a mild muscle atrophy due to a tumor, you may not realize that you have it, but it can still cause you to walk a bit more off-balance than if you didn't have the problem. Since Fred's spinal surgery last year, if he stands up using his walker, he leans much farther forward and to one side than he used to. To our knowledge, the ANs haven't changed during this time period, so I think that says this is muscle related. That's my theory. Will be interested in what others have to say on these subjects. ...Donna (Who is still available to collect hearing aid donations, but please don't bother to donate the in-the-ear type cuz remanufacturing them makes it not worthwhile. BTEs are good, though.) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2000 Report Share Posted September 28, 2000 In a message dated 9/28/00 10:03:33 AM Eastern Daylight Time, hmschoolma@... writes: << 3. Is the vestibular nerve the balance nerve? Why then do some people have great balance even after one or both sides removed? And like Earl, it even improved after his surgeries? (he went to HEI too) >> The Other Questions seem to be answered.. I'm gonna take a stab at the second part of this one. As Donna said, your balance depends on many other things besides these nerves. The reason why it might improve is when the nerve is hooked up but damaged, it may be sending conflicting or even incorrect signals to your brain and thus confusing it with all the other signals it's receiving about the balance. By disconnecting it, the brain is receiving one less signal, but at least the ones it's getting are acurate. I heard my neurosurgeon discussing doing a surgery to correct just this problem. They intentionally disconnected a damaged balance nerve. Pete No Vestibular Balance Nerves and still Skis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2002 Report Share Posted July 3, 2002 Hello Group, I have a couple of questions? First I know that some of you still drive. Some with driving aids and some without. Is there anyone out there that no longer drives because of or as a result of the PLS? For those who no longer drive who or what decided that you should no longer drive. Also could you give me please some of the reason you no longer felt able to drive? I also would like to know if any of you have problems with bladder infections or the bladder having contractions. My husband and I have spent now 2 nights in the E.R. with what appears to me to be almost like labor pains the bladder is contacting so strong that he is in intense pain. The first time this happened he was found to have a full bladder and also an infection. They showed him how to cathider so this he has done when needed to keep from getting the pain from the full bladder. They felt that the muscle relaxers he takes for the PLS was making it hard for the bladder to empty completely. So they felt would help to use cathider. Now this last time in the E.R. was just last night. They found no infection. Bladder was empty due to cathider. But he still was having these contracting pains in the bladder or spasms which ever you would call them. Will I have went on long enough any information will be very helpful. Thanks Shirley from (Michigan) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2002 Report Share Posted July 3, 2002 Thanks Jane Wonder did you at any time consider hand controls? Or was driving not and issue for you? My husband feels the need to drive still to get to and from work but I worry if he is still a safe driver. I don't often ride with him but I did a week or so ago and was a bit afraid. Just wonder if my concerns are warrinted. Thanks again Jane. Shirley (Michigan) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2002 Report Share Posted July 3, 2002 Shirley, I stopped driving in 1997 or 1998 and that is because of PALS in my legs. I just could not lift them and I pressed on the accelerator and could not get leg up unless I lift it. Hope that helps. Jane Anne King Re: questions Hello Group, I have a couple of questions? First I know that some of you still drive. Some with driving aids and some without. Is there anyone out there that no longer drives because of or as a result of the PLS? For those who no longer drive who or what decided that you should no longer drive. Also could you give me please some of the reason you no longer felt able to drive? I also would like to know if any of you have problems with bladder infections or the bladder having contractions. My husband and I have spent now 2 nights in the E.R. with what appears to me to be almost like labor pains the bladder is contacting so strong that he is in intense pain. The first time this happened he was found to have a full bladder and also an infection. They showed him how to cathider so this he has done when needed to keep from getting the pain from the full bladder. They felt that the muscle relaxers he takes for the PLS was making it hard for the bladder to empty completely. So they felt would help to use cathider. Now this last time in the E.R. was just last night. They found no infection. Bladder was empty due to cathider. But he still was having these contracting pains in the bladder or spasms which ever you would call them. Will I have went on long enough any information will be very helpful. Thanks Shirley from (Michigan) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2002 Report Share Posted July 5, 2002 Shirley, Yes I still want to drive and I am going to get controls for car. my husband is not a good driver and I am. He does not like to drive and use to sit and read while I drove. Jane Anne King Re: questions Thanks Jane Wonder did you at any time consider hand controls? Or was driving not and issue for you? My husband feels the need to drive still to get to and from work but I worry if he is still a safe driver. I don't often ride with him but I did a week or so ago and was a bit afraid. Just wonder if my concerns are warrinted. Thanks again Jane. Shirley (Michigan) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2002 Report Share Posted July 5, 2002 Shirley, Yes I still want to drive and I am going to get controls for car. my husband is not a good driver and I am. He does not like to drive and use to sit and read while I drove. Jane Anne King Re: questions Thanks Jane Wonder did you at any time consider hand controls? Or was driving not and issue for you? My husband feels the need to drive still to get to and from work but I worry if he is still a safe driver. I don't often ride with him but I did a week or so ago and was a bit afraid. Just wonder if my concerns are warrinted. Thanks again Jane. Shirley (Michigan) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2002 Report Share Posted July 5, 2002 Shirley, Yes I still want to drive and I am going to get controls for car. my husband is not a good driver and I am. He does not like to drive and use to sit and read while I drove. Jane Anne King Re: questions Thanks Jane Wonder did you at any time consider hand controls? Or was driving not and issue for you? My husband feels the need to drive still to get to and from work but I worry if he is still a safe driver. I don't often ride with him but I did a week or so ago and was a bit afraid. Just wonder if my concerns are warrinted. Thanks again Jane. Shirley (Michigan) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2003 Report Share Posted February 10, 2003 STEPHANIE, Your pain is just as bad as the rest of us never compare because we're all in the same boat and everyone reacts differently to their own. It certainly doesn't sound small to me. God Bless Bev Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2003 Report Share Posted February 10, 2003 STEPHANIE, Your pain is just as bad as the rest of us never compare because we're all in the same boat and everyone reacts differently to their own. It certainly doesn't sound small to me. God Bless Bev Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2004 Report Share Posted October 4, 2004 Hi Pattie, Welcome to the group. We will do our best to answer any questions you may have. You are in my prayers. Hugs nne Breast Cancer Patients Soul Mates for Life http://www.geocities.com/chucky5741/breastcancerpatients.html Check out my breast cancer ornaments at: http://www.geocities.com/chucky5741/bcornament.html also check out my other ornaments and lots of nice gifts at: http://www.cancerclub.com questions > > > > Hello, I have many questions about my care and treatment. Pattie > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2004 Report Share Posted October 4, 2004 Hi Pattie, Welcome to the group. We will do our best to answer any questions you may have. You are in my prayers. Hugs nne Breast Cancer Patients Soul Mates for Life http://www.geocities.com/chucky5741/breastcancerpatients.html Check out my breast cancer ornaments at: http://www.geocities.com/chucky5741/bcornament.html also check out my other ornaments and lots of nice gifts at: http://www.cancerclub.com questions > > > > Hello, I have many questions about my care and treatment. Pattie > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2004 Report Share Posted October 4, 2004 Hi Pattie, Welcome to the group. We will do our best to answer any questions you may have. You are in my prayers. Hugs nne Breast Cancer Patients Soul Mates for Life http://www.geocities.com/chucky5741/breastcancerpatients.html Check out my breast cancer ornaments at: http://www.geocities.com/chucky5741/bcornament.html also check out my other ornaments and lots of nice gifts at: http://www.cancerclub.com questions > > > > Hello, I have many questions about my care and treatment. Pattie > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2004 Report Share Posted October 4, 2004 Hi Pattie, Welcome to our group. You didn't list any questions, but go ahead and ask away. We'll be glad to help any way we can. Ann Please check out my chemo hats: www.cjhats.com__________________________________________________ Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.