Guest guest Posted May 2, 2000 Report Share Posted May 2, 2000 I am not a patient but i do have an interest in chiari. My question is this If this condition is carried for many years and not diagnosed until there is an injury or trauma,if there was a history of it in the family could a person not have the spinal fluid MRI done to diagnose it early and have repairs done before it gets to the debilitating stage with all of the pain and suffering? Sorry for such a long question. Simon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2000 Report Share Posted May 2, 2000 Simon, Some people can have a Chiari 1 malformation and never even develope any symptoms. The surical risks outweigh the benefits in people with minor symptoms. What you and I might consider major symptoms, such as painful chronic headaches are even considered as minor to the doctors when weighed against the risks of the surgery. It sure might save a lot of suffering. But then again we don't know this would be the case as really this decompression surgery is still in the early stages and the doctors still have a lot to learn. Debbie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2000 Report Share Posted May 3, 2000 Another take on this subject though... I've been told by many, not to mention my neurosurgeon dr. Batzdorf of UCLA, that if you wait until your symptoms are severe they could be irreversible. Connie ACM 13mm & FMS Surgery 5/26/00 Re: Crazy Question Simon, Some people can have a Chiari 1 malformation and never even develope any symptoms. The surical risks outweigh the benefits in people with minor symptoms. What you and I might consider major symptoms, such as painful chronic headaches are even considered as minor to the doctors when weighed against the risks of the surgery. It sure might save a lot of suffering. But then again we don't know this would be the case as really this decompression surgery is still in the early stages and the doctors still have a lot to learn. Debbie _________ NOTE: NCC refers to posts with No Chiari Content Unsubscribe Yourself: chiari-unsubscribeegroups Technical Help: chiari-owneregroups WACMA Home: www.pressenter.com/~wacma WACMA List: www.eGroups.com/group/chiari Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2000 Report Share Posted May 3, 2000 Another take on this subject though... I've been told by many, not to mention my neurosurgeon dr. Batzdorf of UCLA, that if you wait until your symptoms are severe they could be irreversible. Connie ACM 13mm & FMS Surgery 5/26/00 Re: Crazy Question Simon, Some people can have a Chiari 1 malformation and never even develope any symptoms. The surical risks outweigh the benefits in people with minor symptoms. What you and I might consider major symptoms, such as painful chronic headaches are even considered as minor to the doctors when weighed against the risks of the surgery. It sure might save a lot of suffering. But then again we don't know this would be the case as really this decompression surgery is still in the early stages and the doctors still have a lot to learn. Debbie _________ NOTE: NCC refers to posts with No Chiari Content Unsubscribe Yourself: chiari-unsubscribeegroups Technical Help: chiari-owneregroups WACMA Home: www.pressenter.com/~wacma WACMA List: www.eGroups.com/group/chiari Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2000 Report Share Posted May 3, 2000 Another take on this subject though... I've been told by many, not to mention my neurosurgeon dr. Batzdorf of UCLA, that if you wait until your symptoms are severe they could be irreversible. Connie ACM 13mm & FMS Surgery 5/26/00 Re: Crazy Question Simon, Some people can have a Chiari 1 malformation and never even develope any symptoms. The surical risks outweigh the benefits in people with minor symptoms. What you and I might consider major symptoms, such as painful chronic headaches are even considered as minor to the doctors when weighed against the risks of the surgery. It sure might save a lot of suffering. But then again we don't know this would be the case as really this decompression surgery is still in the early stages and the doctors still have a lot to learn. Debbie _________ NOTE: NCC refers to posts with No Chiari Content Unsubscribe Yourself: chiari-unsubscribeegroups Technical Help: chiari-owneregroups WACMA Home: www.pressenter.com/~wacma WACMA List: www.eGroups.com/group/chiari Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2000 Report Share Posted May 3, 2000 Connie, You are exactly right. The longer you have neurological problems, the less likely you are to have complete reversal of these symptoms with the surgery. Debbie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2000 Report Share Posted May 3, 2000 Connie, You are exactly right. The longer you have neurological problems, the less likely you are to have complete reversal of these symptoms with the surgery. Debbie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2000 Report Share Posted May 3, 2000 Connie, You are exactly right. The longer you have neurological problems, the less likely you are to have complete reversal of these symptoms with the surgery. Debbie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2000 Report Share Posted May 3, 2000 I have found this to be true. I was told that by my nsg before surgery and so far he was right. The damage was to bad by the time I had surgery so I can only hope it doesnt get worse. Bummer, isnt it? Laurie in Illinois Re: Crazy Question > > > Simon, > Some people can have a Chiari 1 malformation and never even develope > any symptoms. The surical risks outweigh the benefits in people with > minor symptoms. What you and I might consider major symptoms, such as > painful chronic headaches are even considered as minor to the doctors > when weighed against the risks of the surgery. It sure might save a lot > of suffering. But then again we don't know this would be the case as > really this decompression surgery is still in the early stages and the > doctors still have a lot to learn. > > Debbie > > > > _________ > NOTE: NCC refers to posts with No Chiari Content > Unsubscribe Yourself: chiari-unsubscribeegroups > Technical Help: chiari-owneregroups > WACMA Home: www.pressenter.com/~wacma > WACMA List: www.eGroups.com/group/chiari > > > > > > _________ > NOTE: NCC refers to posts with No Chiari Content > Unsubscribe Yourself: chiari-unsubscribeegroups > Technical Help: chiari-owneregroups > WACMA Home: www.pressenter.com/~wacma > WACMA List: www.eGroups.com/group/chiari > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2000 Report Share Posted May 3, 2000 I have found this to be true. I was told that by my nsg before surgery and so far he was right. The damage was to bad by the time I had surgery so I can only hope it doesnt get worse. Bummer, isnt it? Laurie in Illinois Re: Crazy Question > > > Simon, > Some people can have a Chiari 1 malformation and never even develope > any symptoms. The surical risks outweigh the benefits in people with > minor symptoms. What you and I might consider major symptoms, such as > painful chronic headaches are even considered as minor to the doctors > when weighed against the risks of the surgery. It sure might save a lot > of suffering. But then again we don't know this would be the case as > really this decompression surgery is still in the early stages and the > doctors still have a lot to learn. > > Debbie > > > > _________ > NOTE: NCC refers to posts with No Chiari Content > Unsubscribe Yourself: chiari-unsubscribeegroups > Technical Help: chiari-owneregroups > WACMA Home: www.pressenter.com/~wacma > WACMA List: www.eGroups.com/group/chiari > > > > > > _________ > NOTE: NCC refers to posts with No Chiari Content > Unsubscribe Yourself: chiari-unsubscribeegroups > Technical Help: chiari-owneregroups > WACMA Home: www.pressenter.com/~wacma > WACMA List: www.eGroups.com/group/chiari > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2000 Report Share Posted May 3, 2000 I have found this to be true. I was told that by my nsg before surgery and so far he was right. The damage was to bad by the time I had surgery so I can only hope it doesnt get worse. Bummer, isnt it? Laurie in Illinois Re: Crazy Question > > > Simon, > Some people can have a Chiari 1 malformation and never even develope > any symptoms. The surical risks outweigh the benefits in people with > minor symptoms. What you and I might consider major symptoms, such as > painful chronic headaches are even considered as minor to the doctors > when weighed against the risks of the surgery. It sure might save a lot > of suffering. But then again we don't know this would be the case as > really this decompression surgery is still in the early stages and the > doctors still have a lot to learn. > > Debbie > > > > _________ > NOTE: NCC refers to posts with No Chiari Content > Unsubscribe Yourself: chiari-unsubscribeegroups > Technical Help: chiari-owneregroups > WACMA Home: www.pressenter.com/~wacma > WACMA List: www.eGroups.com/group/chiari > > > > > > _________ > NOTE: NCC refers to posts with No Chiari Content > Unsubscribe Yourself: chiari-unsubscribeegroups > Technical Help: chiari-owneregroups > WACMA Home: www.pressenter.com/~wacma > WACMA List: www.eGroups.com/group/chiari > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2000 Report Share Posted May 3, 2000 Connie, I think Dr. Batzdorf is well respected here at Egroups. Also, it's not against the guidelines to say,NICE, stuff about the medics! <grin> It is true, unlike any other bodily system, that the nervous system does not regenerate if lost. Some other parts might take over for the lost portion but it's never a full compensatory functionibility. That said, decompression is a serious operation with serious risk--so is a tonsillectomy--and deserves serious consideration beforehand. God luck and best wishes. to you--- ;-) a wink and a smile can last quite a while. Marcia,aka Me2,ACM1,V/P shunt not decompressed _______________________________________________________ Get 100% FREE Internet Access powered by Excite Visit http://freelane.excite.com/freeisp Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2000 Report Share Posted May 3, 2000 Connie, I think Dr. Batzdorf is well respected here at Egroups. Also, it's not against the guidelines to say,NICE, stuff about the medics! <grin> It is true, unlike any other bodily system, that the nervous system does not regenerate if lost. Some other parts might take over for the lost portion but it's never a full compensatory functionibility. That said, decompression is a serious operation with serious risk--so is a tonsillectomy--and deserves serious consideration beforehand. God luck and best wishes. to you--- ;-) a wink and a smile can last quite a while. Marcia,aka Me2,ACM1,V/P shunt not decompressed _______________________________________________________ Get 100% FREE Internet Access powered by Excite Visit http://freelane.excite.com/freeisp Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2000 Report Share Posted May 3, 2000 Connie, I think Dr. Batzdorf is well respected here at Egroups. Also, it's not against the guidelines to say,NICE, stuff about the medics! <grin> It is true, unlike any other bodily system, that the nervous system does not regenerate if lost. Some other parts might take over for the lost portion but it's never a full compensatory functionibility. That said, decompression is a serious operation with serious risk--so is a tonsillectomy--and deserves serious consideration beforehand. God luck and best wishes. to you--- ;-) a wink and a smile can last quite a while. Marcia,aka Me2,ACM1,V/P shunt not decompressed _______________________________________________________ Get 100% FREE Internet Access powered by Excite Visit http://freelane.excite.com/freeisp Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2000 Report Share Posted May 4, 2000 Laurie....I totally agree....talk about " throwing salt on an open wound " . Sometimes makes you wonder if this is " As Good As It Gets?? " Elaine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2000 Report Share Posted May 4, 2000 Laurie....I totally agree....talk about " throwing salt on an open wound " . Sometimes makes you wonder if this is " As Good As It Gets?? " Elaine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2000 Report Share Posted May 4, 2000 Laurie....I totally agree....talk about " throwing salt on an open wound " . Sometimes makes you wonder if this is " As Good As It Gets?? " Elaine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2000 Report Share Posted May 4, 2000 Re: Crazy Question > Laurie....I totally agree....talk about " throwing salt on an open wound " . > Sometimes makes you wonder if this is " As Good As It Gets?? " Never give up. chows@... Australia Chow Addiction Society Founder and Lifetime Member #1 Are you OLD when you enjoy a good headbanger song with others over 40? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2000 Report Share Posted May 4, 2000 Re: Crazy Question > Laurie....I totally agree....talk about " throwing salt on an open wound " . > Sometimes makes you wonder if this is " As Good As It Gets?? " Never give up. chows@... Australia Chow Addiction Society Founder and Lifetime Member #1 Are you OLD when you enjoy a good headbanger song with others over 40? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2000 Report Share Posted May 4, 2000 Re: Crazy Question > Laurie....I totally agree....talk about " throwing salt on an open wound " . > Sometimes makes you wonder if this is " As Good As It Gets?? " Never give up. chows@... Australia Chow Addiction Society Founder and Lifetime Member #1 Are you OLD when you enjoy a good headbanger song with others over 40? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2000 Report Share Posted May 5, 2000 Simon, According to what I have read and been told by Dr. Frim, right now this is not plausable. For one thing, just because a person has an ACM 1, it doesn't necessarily mean that will ever have any problem. Occassionally a person can have a Chiari 1 malformation and maintain a good CSF flow without ever developing a blockage of flow enough to cause any symptoms. It wouldn't make sense to do surgery on someone in this case as you might like cause more problems than they would have had otherwise. Right now, they are only doing surgery on people who are usually beyond the initial stage of pain, and have enough neurological problems so that the need for surgery outweighs the risks of the surgery. I think it must be a pretty hard call for the doctors. The longer you are symptomatic especially with the neurological symptoms, the more likely that you will have some remaining or irreversable neurological symptoms post op. You have to remember that this is all still somewhat in the experimental stage right now as they are still doing studies and learning more about post op complications every day. Hopefully, some day soon, they will have worked all the " kinks " out so that the surgcal procedure becomes more well known and more well taught in med school. Then more doctors will know and believe the information about ACM 1. Then the radiologists will also be able to recognize it better also. All in all, there are still some " kinks " to be worked out, some more studies to be done, some teaching to be done to doctors/radiologists ect.. Right now, the majority of us according to the general doctor's criteria, only fall into the category of pseudoneurological patients. Plain and simple, psychosomatic disorders are what we have. This is only because this is what they learned in school, and it is all they know. I hope the day comes soon that that they ALL will know the truth. Debbie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2000 Report Share Posted May 5, 2000 Simon, According to what I have read and been told by Dr. Frim, right now this is not plausable. For one thing, just because a person has an ACM 1, it doesn't necessarily mean that will ever have any problem. Occassionally a person can have a Chiari 1 malformation and maintain a good CSF flow without ever developing a blockage of flow enough to cause any symptoms. It wouldn't make sense to do surgery on someone in this case as you might like cause more problems than they would have had otherwise. Right now, they are only doing surgery on people who are usually beyond the initial stage of pain, and have enough neurological problems so that the need for surgery outweighs the risks of the surgery. I think it must be a pretty hard call for the doctors. The longer you are symptomatic especially with the neurological symptoms, the more likely that you will have some remaining or irreversable neurological symptoms post op. You have to remember that this is all still somewhat in the experimental stage right now as they are still doing studies and learning more about post op complications every day. Hopefully, some day soon, they will have worked all the " kinks " out so that the surgcal procedure becomes more well known and more well taught in med school. Then more doctors will know and believe the information about ACM 1. Then the radiologists will also be able to recognize it better also. All in all, there are still some " kinks " to be worked out, some more studies to be done, some teaching to be done to doctors/radiologists ect.. Right now, the majority of us according to the general doctor's criteria, only fall into the category of pseudoneurological patients. Plain and simple, psychosomatic disorders are what we have. This is only because this is what they learned in school, and it is all they know. I hope the day comes soon that that they ALL will know the truth. Debbie 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.