handmadebyemy Posted September 6, 2010 Report Share Posted September 6, 2010 Today, for the first time, I heard of Chiari Malformation & its relationship to POTS. I had never heard of it before. What do you know about it? Has anyone talked to their doctors about Chiari? It it worth testing for?Thanks, I appreciate any help & advice.Emy Quote Link to comment Share on other sites More sharing options...
issie Posted September 6, 2010 Report Share Posted September 6, 2010 I may not use the right terminoloy in my reply. But, that is where the brain tissue starts to go down into the space below where the brain stem is and cause disfunction because of it pressing on the brain stem. Most doctors won't diagnosis it unless there is a 5mm drop. Some doctors will say you have Chairi 0 if there is a drop, but less than 5 mm. Some doctors believe that it may cause problems in some people even with a small amount of drop. Others do not believe that to be the case. They check for it with an MRI of your head and neck. It's easy to check, but you sometimes have to ask them to pay attention in the reading or they just don't look at that. I had to ask them to go back and look at it, I have a 3mm drop on one side and less on the other. The Clinic that I went to doesn't recognize anything unless there is the 5 mm drop. So no official diagnosis. But, as I said, that depends on who reads the scan. It is a possiblity of causing dysfunction - it depends on how sensitive your body is. Quote Link to comment Share on other sites More sharing options...
ChiariMSwithPOTS Posted September 7, 2010 Report Share Posted September 7, 2010 I have Chiari. I had a 6mm herniation but it looked like Chiari 0 on the MRI. Plus I had 10x the amount of pressure they thought I did when they put in my shunt. I'm 6 years post op and I have POTS because of Chiari and Ehlers Danlos. Or maybe it's just because Ehlers Danlos is connected with Chiari. I haven't done the geneology of it, LOL. About 2 or 3 years after my surgery I showed NO signs of POTS. Now all of a sudden it's back. I'm not sure why. I don't know if it's because of some adrenal/hormonal problems I had in June (it's corrected now, but may have trigger the POTS again) or I'm having intracranial pressure again with my Chiari. Either way I'm going to get to the bottom of it. If you do have Chairi, you have to have major headaches, trouble swallowing, dizziness, and more. I wouldn't seek it out unless you mainly have the major headaches. Quote Link to comment Share on other sites More sharing options...
sandymbme Posted September 7, 2010 Report Share Posted September 7, 2010 I have been diagnosed with Chiari malformation by some docs, and Low-lying cerebellar tonsils by others. By tissue descends 5mm, so I am right on the border. After doing a cine-MRI and a spinal tap with fluroscopy, the "experts" decided that it is not the root cause of my POTS, not does it significantly contribute to my cerebral-spinal fluid pressure. That being said, I have had very little success with any form of treatment...Sandy Quote Link to comment Share on other sites More sharing options...
handmadebyemy Posted September 7, 2010 Author Report Share Posted September 7, 2010 Well I definitely have the major headaches - almost daily for 12+ years. Has anyone had the surgery to correct it & it so has it been beneficial? Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.