Guest guest Posted February 22, 2006 Report Share Posted February 22, 2006 _rocco0425@..._ (mailto:rocco0425@...) , , I have not heard of anything else other then surgery to correct Chiari. I heard that what you can do, is make yourself as comfortable as possible when you lay down or when you go to sleep. Jeff Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2006 Report Share Posted February 22, 2006 was found muttering these words: I take Diamox, which is a drug used for moutain sickness. There is a 50% chance my Chiari will improve from my detethering surgery. However, my Chiari symptoms began with the first detethering operation, so it is probably unlikely it will improve this time :-( If you have tethered cord, you will have to be detethered first -- at least that is what I have been told. I have Chiari problems which cannot be addressed until I have my cord released. Which is why it is so important to me to get it right this time :-) The WACMA (World Arnold Chiari Malformation Association) website has other things you can try: www.pressenter.com/~wacma/ >>Just wondering if there is anything you guys can do for the Chiari other >>than surgery? >> ********************************* ces, tcs, acm, sbo Aim Name = sumchyk ********************************* Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2006 Report Share Posted March 9, 2006 Yes, I believe this is generally the Case. But I do have to wonder if there are those of us around where the opposite would be best. I've gotten worse during both of my Detetherings, and it just makes me wonder if aggervation of the Chiari could be the reason for that. I think for some they can be 2 seperate problems with one not depending on the other, thus treatment for each would be best. Then for other's, it's different. Me Nebraska, USA mymocha@... > If you have tethered cord, you will have to be detethered first -- at > least that is what I have been told. I have Chiari problems which cannot > be addressed until I have my cord released. Which is why it is so > important to me to get it right this time :-) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2006 Report Share Posted March 10, 2006 I just found out that I have a tethered cord, based on a 6th lumbar vertabrae, where my spinal cord is an inch too short, and it is tethered. I have had the decompression surgery for my Chiari -- almost 4 years ago. My leg and bladder symptoms continued to worsen after surgery. This past summer I became serviously symptomatic -- Chiari related -- again, along with the TCS issues. I finally decided to return to a neurosrg who decided to take lumbar xrays and MRI's. He found the tethered cord issue. I also have a " bobble head " I found out. I have EDS issues and cranial instability -- EDS major issue because a lot of stroke victims on my dad's family's side and a son with Marfan's symptoms along with my symptoms. Obviously, that was an issue I was expecting prior to returning to the new neurosrg. But, the TCS issue, was unexpected. Doc said that the TCS has helped to deem my decompression an unsuccess story. If it had been dealt with prior to my decompression, then my instability issues would not have gotten so bad (brainstem damage). I will be having the detethering surgery prior to a cervical fusion. I have opt to do both 4 days apart -- not normal -- but I am in a time crunch for rehap time for two surgeries -- need it complete by the end of summer. I am very headstrong. But the point of this explanation is that I am coming to the understanding that the two can be easily related and can react to each other. It is like a push/pull problem. The TCS causes a pulling problem on the brain. (Like a tug rope) Now I am new to all of this, but this is what I have gotten so far. Kind of logical I guess. " Cord too short for the bones " , or the attachment creates a since of " too short " . Not sure if this helps and please correct me if I am off base. I am new to this. BearHaven Australian Shepherds > > Yes, I believe this is generally the Case. > > But I do have to wonder if there are those of > us around where the opposite would be best. > I've gotten worse during both of my Detetherings, > and it just makes me wonder if aggervation of > the Chiari could be the reason for that. > > I think for some they can be 2 seperate problems > with one not depending on the other, thus > treatment for each would be best. Then for > other's, it's different. > > Me > Nebraska, USA > mymocha@... > > > If you have tethered cord, you will have to be detethered first -- at > > least that is what I have been told. I have Chiari problems which cannot > > be addressed until I have my cord released. Which is why it is so > > important to me to get it right this time :-) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2006 Report Share Posted March 10, 2006 Bummer...sorry to hear the surgery wasn't successful. I've heard this occurs at times with Chiari plus EDS as often the EDS factor is not known at the time of surgery which might require different technique in EDS. On the Chiari institute website http://www.chiariinstitute.com/<http://www.chiariinstitute.com/> they have a video conference describing cases of Chiari and Ehlers Danlos association. It might be helpful to contact them or NIH (National Institutes of Health) for more detail if needed. 4 days apart...wow...maybe it's good to get it over with. Good luck AG Re: Chiari I just found out that I have a tethered cord, based on a 6th lumbar vertabrae, where my spinal cord is an inch too short, and it is tethered. I have had the decompression surgery for my Chiari -- almost 4 years ago. My leg and bladder symptoms continued to worsen after surgery. This past summer I became serviously symptomatic -- Chiari related -- again, along with the TCS issues. I finally decided to return to a neurosrg who decided to take lumbar xrays and MRI's. He found the tethered cord issue. I also have a " bobble head " I found out. I have EDS issues and cranial instability -- EDS major issue because a lot of stroke victims on my dad's family's side and a son with Marfan's symptoms along with my symptoms. Obviously, that was an issue I was expecting prior to returning to the new neurosrg. But, the TCS issue, was unexpected. Doc said that the TCS has helped to deem my decompression an unsuccess story. If it had been dealt with prior to my decompression, then my instability issues would not have gotten so bad (brainstem damage). I will be having the detethering surgery prior to a cervical fusion. I have opt to do both 4 days apart -- not normal -- but I am in a time crunch for rehap time for two surgeries -- need it complete by the end of summer. I am very headstrong. But the point of this explanation is that I am coming to the understanding that the two can be easily related and can react to each other. It is like a push/pull problem. The TCS causes a pulling problem on the brain. (Like a tug rope) Now I am new to all of this, but this is what I have gotten so far. Kind of logical I guess. " Cord too short for the bones " , or the attachment creates a since of " too short " . Not sure if this helps and please correct me if I am off base. I am new to this. BearHaven Australian Shepherds > > Yes, I believe this is generally the Case. > > But I do have to wonder if there are those of > us around where the opposite would be best. > I've gotten worse during both of my Detetherings, > and it just makes me wonder if aggervation of > the Chiari could be the reason for that. > > I think for some they can be 2 seperate problems > with one not depending on the other, thus > treatment for each would be best. Then for > other's, it's different. > > Me > Nebraska, USA > mymocha@... > > > If you have tethered cord, you will have to be detethered first -- at > > least that is what I have been told. I have Chiari problems which cannot > > be addressed until I have my cord released. Which is why it is so > > important to me to get it right this time :-) > > > 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 April 19, 2007 Report Share Posted April 19, 2007 > Not specifically what you are asking, but I have Myelomeingocele, Tethered > Cord and ACM II. > > There is WACMA. http://www.wacma.com is their > Website. Or to Subscribe to the List send a blank Email to: > chiari-subscribe Of course, there are others as well. > > Me > Nebraska, USA > mymocha@... > > Does anyone have tsc and kids with Chiari or vice versa? > > > Is there a Chiari yahoogroup? > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2007 Report Share Posted April 19, 2007 Hi All I have chiari and my daughter (7) is being worked up for tethered cord and she does NOT have chiari. Also wanted to mention that chiari is another wonderful Chiari support group on Yahoo. Occasionally, Chiari specialists (from TCI and others)post on this forum. http://health.groups.yahoo.com/group// Blessings to all, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2007 Report Share Posted April 20, 2007 I just wanted to interject here just a bit. TCI *The Chiari Insititute* main focus is Chiari (ACM). More recently they added on treating people with a certain kind of Tether, they believed related to Chiari. But for people outside that group, I am unsure if TCI would be the place for them......especially if they don't have, or don't suspect Chiari. I do realize why you said what you did though, because if your experience. I am glad it all worked out for your little one. Me Nebraska, USA mymocha@... My 2 tear old just had surgery to release his TSC at the Chiari Institute in New York. This is all they do and they do it better than anyone. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2007 Report Share Posted November 5, 2007 Also known as Arnold Chiari Malformation (ACM). It is when the bottom of the Cerebellum herniates into the Spinal Canal, blocking CSF. Of course, that is a simple explanation. For more detailed information, you might want to check out the Links on my Site http://www.mybookmarks.com/public/SB_Parents and go under: Arnold Chiari Malformation. Brande mymocha@... what exactly is the Chairi??? ________________________________________________________________________ ____________ Need a vacation? Get great deals to amazing places on Yahoo! Travel. http://travel.yahoo.com/ --- End forwarded message --- Quote Link to comment Share on other sites More sharing options...
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