Guest guest Posted April 23, 2003 Report Share Posted April 23, 2003 Morning, Marty, Since I don't have diabetes, I can't answer #2... But re #1 - >1. Can symptoms get worse even > though no change is seen on the MRI? Yes- my MRI has been the same for 6 years now, but I've slowly lost ground. V Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2003 Report Share Posted April 23, 2003 Hallo Marten-Jan, Lange tijd niets gehoord van je ,zoals je al zei. Hoe gaat het voor de rest, kom je nog wel eens in Nederland ? Marty, I get every year an MRI, and there is no change at all. But the pain is getting worse somethime, i told you this our last meeting. My father has also diabetes (heeft een kleine infuuspomp) and also Neuropathy first in his legs and now it seems in his neck to. He is 71 years. As we talk about it the sympthones like same is i have by myself. I write you a other mail in dutch soon , easyer for me to explain this things. I quit my job two months ago. and now getting WAO. They do not know how to replace me by the company anymore. I try to work for one now on therapeutic base and as you know this is only possible for one year in the Netherlands. Then you get WAO. but try to find a way to do other work again but first back to school then " again " . I'm now 37 so the it is not so easy anymore to find a good job these day's . If it is the lipoma there is maby a possible thing to say. Maby nerves are strangeld in the the lipoma. Is the lipoma complete removed ore a part. ? Groeten uit zonnig Nederland..... Jan.Willem NSG visit > Hi, I'm a long time lurker, but have not posted for quite awhile. > > I went back to see my NSG this past week for the first time in 2 years. > I am 56 years old and have TCS, the cord being held down by a lipoma > since birth. My symptoms over the years have very slowly grown worse. So > slowly that I have to remind myself of what I used to be able to do, but > can't anymore. I recently started using a catheter because I was not > able to empty my bladder causing occasional infections. I also find that > I have less and less control over my feet. Standing still on a carpeted > surface is the worst. If I don't keep moving I'll fall over. Luckily, I > have not had any pain. > To make a long story short, my NSG has been very reluctant to recommend > surgery because I also have diabetes. He seems to think that there is a > good chance that the neuropathy is caused by the diabetes and not the > TCS. I have trouble buying that since my diabetes has been under control > and I have no other symptoms that could be attributed to the diabetes. > His position has always been that the risks of surgery outweigh the > benefits. I just had another MRI done to see if he can detect any > changes in my TCS. Two years ago, he was not able to see any changes. > > I have two questions for the group: 1. Can symptoms get worse even > though no change is seen on the MRI? and 2. Does anyone have any > thoughts on how diabetes might play a role in tethered cord? > > Marty > > > > > > > Not Medical Advice. We Are Not Doctors. > Need help with the list? Email kathy@...,michelle@..., rick@... > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2003 Report Share Posted May 3, 2003 Do you know, or can you find out why he said this? Not many Dr.'s have said such.............so I am curious as to why yours is. Are there any Studies or such that point to this? Also, your MRI Picture of your Tethered Cord may not actually change, probably won't (atleast based on what I know), unless you develop a Syrinx or something. But that doesn't mean things are not getting worse for you Tethered Cord wise. Well, that answered your first Question. Second Question...........I don't know much about Diabetes, and I also don't know if it plays a role in Tethered Cord. Hopefully somebody else will be able to answer that Question for you. Just some thoughts from Brande Me Nebraska, USA mymocha@... > His position has always been that the risks of surgery outweigh the > benefits. I just had another MRI done to see if he can detect any > changes in my TCS. Two years ago, he was not able to see any changes. > 1. Can symptoms get worse even > though no change is seen on the MRI? and 2. Does anyone have any > thoughts on how diabetes might play a role in tethered cord? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2003 Report Share Posted May 7, 2003 I found a couple of references to a Dr. Waldman at Albany (NY) Medical Center. He is a pediatric NSG and one of his specialties is TCS. Has anyone had any experiences with him? Marty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2003 Report Share Posted May 8, 2003 > Thanks for your answer. I saw my NSG again yesterday and he basically > said the same thing as last time (2 years ago) that the risks of > surgery outweigh the benefits. However, my symptoms are slowly getting > worse and I told him I was scared of losing more function. His > response was that I shouldn't be losing more function because I'm no > longer growing. That totally flies in the face of everything I have > read on this forum. It seems that many of you have had loss of > function as adults. He seems to think something else is going on (like > the diabetes). I don't buy it and he's now trying to appeal to the HMO > for me to get another opinion outside of the network. The network > includes both Westchester and Albany, NY Medical centers, but he > didn't think he would find NSGs with enough experience in either of > these hospitals. > > Can you guys recommend NSGs in the NE area like in NYC or Boston. I > know some names have been mentioned before, but I'm not quite sure how > to find them by searching the database. I'm only about 2 hours from > NYC and about 3 to 3 1/2 hours from Boston. > > By the way, my NSG is probably the best in the mid-Hudson area, but I > don't think he has had much experience with TCS. > Marty Brande wrote: >Do you know, or can you find out why he said this? Not many Dr.'s have said >such.............so I am curious as to why yours is. Are there any Studies >or such that point to this? > >Also, your MRI Picture of your Tethered Cord may not actually change, >probably won't (atleast based on what I know), unless you develop a Syrinx >or something. But that doesn't mean things are not getting worse for you >Tethered Cord wise. Well, that answered your first Question. Second >Question...........I don't know much about Diabetes, and I also don't know >if it plays a role in Tethered Cord. Hopefully somebody else will be able to >answer that Question for you. > >Just some thoughts from Brande > >Me >Nebraska, USA >mymocha@... > > > > > >>His position has always been that the risks of surgery outweigh the >>benefits. I just had another MRI done to see if he can detect any >>changes in my TCS. Two years ago, he was not able to see any changes. >> >> >> > 1. Can symptoms get worse even > > >>though no change is seen on the MRI? and 2. Does anyone have any >>thoughts on how diabetes might play a role in tethered cord? >> >> > > > > >Not Medical Advice. We Are Not Doctors. >Need help with the list? Email kathy@...,michelle@..., rick@... > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2003 Report Share Posted May 8, 2003 > Thanks for your answer. I saw my NSG again yesterday and he basically > said the same thing as last time (2 years ago) that the risks of > surgery outweigh the benefits. However, my symptoms are slowly getting > worse and I told him I was scared of losing more function. His > response was that I shouldn't be losing more function because I'm no > longer growing. That totally flies in the face of everything I have > read on this forum. It seems that many of you have had loss of > function as adults. He seems to think something else is going on (like > the diabetes). I don't buy it and he's now trying to appeal to the HMO > for me to get another opinion outside of the network. The network > includes both Westchester and Albany, NY Medical centers, but he > didn't think he would find NSGs with enough experience in either of > these hospitals. > > Can you guys recommend NSGs in the NE area like in NYC or Boston. I > know some names have been mentioned before, but I'm not quite sure how > to find them by searching the database. I'm only about 2 hours from > NYC and about 3 to 3 1/2 hours from Boston. > > By the way, my NSG is probably the best in the mid-Hudson area, but I > don't think he has had much experience with TCS. > Marty Brande wrote: >Do you know, or can you find out why he said this? Not many Dr.'s have said >such.............so I am curious as to why yours is. Are there any Studies >or such that point to this? > >Also, your MRI Picture of your Tethered Cord may not actually change, >probably won't (atleast based on what I know), unless you develop a Syrinx >or something. But that doesn't mean things are not getting worse for you >Tethered Cord wise. Well, that answered your first Question. Second >Question...........I don't know much about Diabetes, and I also don't know >if it plays a role in Tethered Cord. Hopefully somebody else will be able to >answer that Question for you. > >Just some thoughts from Brande > >Me >Nebraska, USA >mymocha@... > > > > > >>His position has always been that the risks of surgery outweigh the >>benefits. I just had another MRI done to see if he can detect any >>changes in my TCS. Two years ago, he was not able to see any changes. >> >> >> > 1. Can symptoms get worse even > > >>though no change is seen on the MRI? and 2. Does anyone have any >>thoughts on how diabetes might play a role in tethered cord? >> >> > > > > >Not Medical Advice. We Are Not Doctors. >Need help with the list? Email kathy@...,michelle@..., rick@... > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2003 Report Share Posted May 8, 2003 Marty, You are right on about symptoms worsening as adults . I had my first surgery at 6 and was told I would need it again when I was done growing which I did. But I have also had surgery twice since then most recent 6 weeks ago and I am 40. I live in Central NY and have a excellent group of nsg's in Syracuse NY. If you are interested in more info on them just let me know. My nsg that just did my surgery is in a group of ten and he is the one who specializes in tcs. Chris Re: NSG visit > Thanks for your answer. I saw my NSG again yesterday and he basically > said the same thing as last time (2 years ago) that the risks of > surgery outweigh the benefits. However, my symptoms are slowly getting > worse and I told him I was scared of losing more function. His > response was that I shouldn't be losing more function because I'm no > longer growing. That totally flies in the face of everything I have > read on this forum. It seems that many of you have had loss of > function as adults. He seems to think something else is going on (like > the diabetes). I don't buy it and he's now trying to appeal to the HMO > for me to get another opinion outside of the network. The network > includes both Westchester and Albany, NY Medical centers, but he > didn't think he would find NSGs with enough experience in either of > these hospitals. > > Can you guys recommend NSGs in the NE area like in NYC or Boston. I > know some names have been mentioned before, but I'm not quite sure how > to find them by searching the database. I'm only about 2 hours from > NYC and about 3 to 3 1/2 hours from Boston. > > By the way, my NSG is probably the best in the mid-Hudson area, but I > don't think he has had much experience with TCS. > Marty Brande wrote: >Do you know, or can you find out why he said this? Not many Dr.'s have said >such.............so I am curious as to why yours is. Are there any Studies >or such that point to this? > >Also, your MRI Picture of your Tethered Cord may not actually change, >probably won't (atleast based on what I know), unless you develop a Syrinx >or something. But that doesn't mean things are not getting worse for you >Tethered Cord wise. Well, that answered your first Question. Second >Question...........I don't know much about Diabetes, and I also don't know >if it plays a role in Tethered Cord. Hopefully somebody else will be able to >answer that Question for you. > >Just some thoughts from Brande > >Me >Nebraska, USA >mymocha@... > > > > > >>His position has always been that the risks of surgery outweigh the >>benefits. I just had another MRI done to see if he can detect any >>changes in my TCS. Two years ago, he was not able to see any changes. >> >> >> > 1. Can symptoms get worse even > > >>though no change is seen on the MRI? and 2. Does anyone have any >>thoughts on how diabetes might play a role in tethered cord? >> >> > > > > >Not Medical Advice. We Are Not Doctors. >Need help with the list? Email kathy@...,michelle@..., rick@... > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2003 Report Share Posted May 14, 2003 May I ask which group of nsg's you are with? I am in central NY and my nsg is in syracuse. Re: NSG visit > > > > > > Thanks for your answer. I saw my NSG again yesterday and he basically > > said the same thing as last time (2 years ago) that the risks of > > surgery outweigh the benefits. However, my symptoms are slowly getting > > worse and I told him I was scared of losing more function. His > > response was that I shouldn't be losing more function because I'm no > > longer growing. That totally flies in the face of everything I have > > read on this forum. It seems that many of you have had loss of > > function as adults. He seems to think something else is going on (like > > the diabetes). I don't buy it and he's now trying to appeal to the HMO > > for me to get another opinion outside of the network. The network > > includes both Westchester and Albany, NY Medical centers, but he > > didn't think he would find NSGs with enough experience in either of > > these hospitals. > > > > Can you guys recommend NSGs in the NE area like in NYC or Boston. I > > know some names have been mentioned before, but I'm not quite sure how > > to find them by searching the database. I'm only about 2 hours from > > NYC and about 3 to 3 1/2 hours from Boston. > > > > By the way, my NSG is probably the best in the mid-Hudson area, but I > > don't think he has had much experience with TCS. > > Marty > > > > > Brande wrote: > > >Do you know, or can you find out why he said this? Not many Dr.'s have said > >such.............so I am curious as to why yours is. Are there any Studies > >or such that point to this? > > > >Also, your MRI Picture of your Tethered Cord may not actually change, > >probably won't (atleast based on what I know), unless you develop a Syrinx > >or something. But that doesn't mean things are not getting worse for you > >Tethered Cord wise. Well, that answered your first Question. Second > >Question...........I don't know much about Diabetes, and I also don't know > >if it plays a role in Tethered Cord. Hopefully somebody else will be able to > >answer that Question for you. > > > >Just some thoughts from Brande > > > >Me > >Nebraska, USA > >mymocha@... > > > > > > > > > > > >>His position has always been that the risks of surgery outweigh the > >>benefits. I just had another MRI done to see if he can detect any > >>changes in my TCS. Two years ago, he was not able to see any changes. > >> > >> > >> > > 1. Can symptoms get worse even > > > > > >>though no change is seen on the MRI? and 2. Does anyone have any > >>thoughts on how diabetes might play a role in tethered cord? > >> > >> > > > > > > > > > >Not Medical Advice. We Are Not Doctors. > >Need help with the list? Email kathy@...,michelle@..., rick@... > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2003 Report Share Posted May 21, 2003 Speaking of which, has anyone had any experience with Dr. Abbott in NY (Beth Israel). I know he worked with Dr. Epstein before his accident. I'm trying to find an NSG for a second opinion in the Northeast area. Brande wrote: >I can't believe there are Dr.'s still out there who believe this. It is just >not true. I think you definately need a second Opinion. It used to be >believed that your problems with Tethered Cord would stop after you had >stopped Growing...........but they have since come to find out that that is >just not true. Tethered Cord may be a, possible, life long problem. I say >possible, because, for some reason, there are people who never have a >problem with it.......or there are some who just have one bout with it, and >then it doesn't bother them again. > >I feel you definately need a second Opinion.........however, I wouldn't >ignore his comment that there might be something else going on too, like >your Diabetes, either. > >Good luck. > >Me >Nebraska, USA >mymocha@... > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2003 Report Share Posted May 21, 2003 Speaking of which, has anyone had any experience with Dr. Abbott in NY (Beth Israel). I know he worked with Dr. Epstein before his accident. I'm trying to find an NSG for a second opinion in the Northeast area. Brande wrote: >I can't believe there are Dr.'s still out there who believe this. It is just >not true. I think you definately need a second Opinion. It used to be >believed that your problems with Tethered Cord would stop after you had >stopped Growing...........but they have since come to find out that that is >just not true. Tethered Cord may be a, possible, life long problem. I say >possible, because, for some reason, there are people who never have a >problem with it.......or there are some who just have one bout with it, and >then it doesn't bother them again. > >I feel you definately need a second Opinion.........however, I wouldn't >ignore his comment that there might be something else going on too, like >your Diabetes, either. > >Good luck. > >Me >Nebraska, USA >mymocha@... > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2003 Report Share Posted May 21, 2003 Speaking of which, has anyone had any experience with Dr. Abbott in NY (Beth Israel). I know he worked with Dr. Epstein before his accident. I'm trying to find an NSG for a second opinion in the Northeast area. Brande wrote: >I can't believe there are Dr.'s still out there who believe this. It is just >not true. I think you definately need a second Opinion. It used to be >believed that your problems with Tethered Cord would stop after you had >stopped Growing...........but they have since come to find out that that is >just not true. Tethered Cord may be a, possible, life long problem. I say >possible, because, for some reason, there are people who never have a >problem with it.......or there are some who just have one bout with it, and >then it doesn't bother them again. > >I feel you definately need a second Opinion.........however, I wouldn't >ignore his comment that there might be something else going on too, like >your Diabetes, either. > >Good luck. > >Me >Nebraska, USA >mymocha@... > > > Quote Link to comment Share on other sites More sharing options...
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