My Posts
15 hours in the Chiari Malformation Community - 102
There are more tests to be done.....CINE MRI and MRI's of the thoracic and lumbar spine.... And then testing for related conditions.....EDS, ICP, POTS (which can affect heart rate and BP).... Use the link above to look for Drs ...keeping in mind the list is not a referral nor an endorsement for those listed on it....use it to research the Dr...
16 hours in the Chiari Malformation Community - 102
Link to list of Drs - http://www.medhelp.org/posts/Chiari-Malformation/-List-of-Chiari-Drs--USA-2013-2014/show/2046186
16 hours in the Chiari Malformation Community - 102
Hi and welcome to the Chiari forum, We do have a list of Drs for you to use in researching Drs.....the list is not a referral nor an endorsement for those listed on it.... Also keep in mind you may need to travel as many of us do go out of state to get to a true Chiari specialist. May I ask did they do testing to see if he has a CSF obstructio...
17 hours in the Neurology Community - 2
Hi...there are several conditions with very similar symptoms....so 1- request copies of your MRI and the report....2- get several opinions.... I have a condition with similar symptoms which is often misDX'd as MS but is more common then MS...but not as well known so finding Drs well informed and experienced is not always easy.... The thing is...
17 hours in the Chiari Malformation Community - 20
Yeah it could be ICP or POTS....so do let your Drs know about that...there is a tilt table test you should have.....
18 hours in the Chiari Malformation Community - 20
Yes a few members have been to him....you can use the search this community feature to pull up older threads on this topic...and read what others have posted as they may no longer be active members,you can PM them to generate an email..... You said depending on your position, this could indicate POTS.....so have a Dr test you.... Are the HA's ...
19 hours in the Chiari Malformation Community - 20
I know how you feel....and you sound like you are in a flare up...relax and allow it to calm down....Chiari symptoms cycle so, it can feel like it went away or stopped when it is just dormant and it can depend on you, what your activities are and how stressed out you are as to when another flare will happen...or how long it will last...so do try and relax...
19 hours in the Chiari Malformation Community - 1
Hi and welcome to the Chiari forum. Unfortunately far too many Drs do not know enuff about Chiari and use old methods to DX....looking at the length of the herniation instead of seeing if it is causing a CSF obstruction,.....Many will say it needs to be 5mm's or longer, the problem with that is Chiari is the malformation of the skull not the her...
21 hours in the Back & Neck Community - 3
NO Chiros if you have a syrinx from Syringomyelia or possibly have Chiari Malformation....you said you had surgery...most times it is a posterior fossa decompression for Chiari that can help when one has Syringomyelia.... Find out ALL that was done for your surgery and get a NEW MRI as it could be scar tissue or may not have been done large enuff t...
21 hours in the Chiari Malformation Community - 4
http://www.medhelp.org/posts/Chiari-Malformation/-List-of-Chiari-Drs--USA-2013-2014/show/2046186