My Posts
15 hours in the Chiari Malformation Community - 27
Hi the member u r replying to has not posted since 2011....u may want to send her a PM (private message) which will generate an e-mail informing her someone is trying to make contact. U can also create a new thread on this topic to get the currently active members to participate. I agree with u it is very frustrating when a Dr tells us symptoms w...
19 hours in the Chiari Malformation Community - 3
Hi....the orbs or visual disturbances are not uncommon for those with Chiari...some only have them pre op....while others may continue to have them post op due to dome nerve damage. Have u had surgery for ur Chiari? Have u been DX'd with EDS....as it can also be related to CCI which makes it very difficult to hold ur head up....
Apr 18, 2014 in the Chiari Malformation Community - 4
Keep in mind MRI's were not used for general DX until the late 1980's and the cost so high they were not in common use until the late '80's early 90's..... So even for myself a MRI was not offered until the mid 90's....so...with that in mind u can see y it is difficult to know if older family members may have had it or if...
Apr 18, 2014 in the Chiari Malformation Community - 20
Thanks to everyone that participated in this thread so far, I encourage more to do so as we will use info from this to create more Health Pages so all info is in one place...I do that will threads, polls and certain monthly topics as I am trying to get info that may help someone else as they come here new and in need of what to do next or try next.... ...
Apr 18, 2014 in the Chiari Malformation Community - 12
Thanks for popping back on as I am not as familiar with this issue since I do not have first hand knowledge...like urself....I appreciate u coming back on and helping this member. How are u doing?
Apr 18, 2014 in the Chiari Malformation Community - 12
I can look but not sure I will be able to tell ...someone like zygy2 since she had these issues would be better to offer insight.... I did look and did not see ne photo's.....??
Apr 18, 2014 in the GERD (Acid Reflux) Community - 1
Hi and welcome to the GERD forum. It is possible it is GERD, as we can feel anxious when a Dr does not take us seriously....And when we do not understand what is going on..... It can also be a thyroid issue, my sister had thyroiditis so bad she could not swallow her own saliva and that is what made me think of it....do see a Dr and look to ur fami...
Apr 18, 2014 in the Rare Diseases Community - 3
Not sure if it is hereditary or not...but u do have to take notice when more then one family member is DX with the same conditions/issues. Did u get a copy of ur thyroid labs?...Do u know if u were tested for an auto immune thyroid condition or did they just do TSH? If so, u can have "normal" levels when in fact something else is going on.....
Hi and welcome to the Spinal Cord C/D forum. I did reply to this same post in the Chiari Malformation forum...please see my reply there....I do indicate since u have a syrinx (known as Syringomyelia) that could be part of ur issues and further testing will help determine how to move forward with treatment once u have a clear idea what else is going on...
Apr 18, 2014 in the Chiari Malformation Community - 2
Hi and welcome to the Chiari forum We do have a list of Drs that the members here compiled of Drs they have been to, treated by and liked....the list is not a referral nor an endorsement....use the list as a starting place to research Drs in ur area and be advised u may have to travel to get to one....also keep in mind what or who works for one, may...