what should i do

[derek1983]

hello im new to this site and new to chiari i have so many questions first off how do i find a doctor that knows about this in my area i recently saw a specialist in plattsburg ny who had to google chiari malformation in front of me before telling me anything and that really ruined my experience with her she did not know how to read my mri so i have no clue how serious or not my case is. i have headaches constantly and if i have a cold or allergies and start coughing i feel intense pain in the back of my head neck area and pass out this happens way more than i would like it too on one occasion i hit the floor and had to go to the er with face injuries if anyone knows of a good specialist in the upstate ny area id love to hear from you thanks

[selmaS]

  Hi and welcome to the Chiari forum.

One thing I did learn about Chiari is  the condition is not rare, but well informed  and experienced Drs are.

U may not have a Dr in Up state NY, but u do have a few top Chiari Drs in NY.....we have a list of Drs for ur use to research Drs as it is not a referral...it is only a means to help u get started.If the name is on the list, then the Dr successfully treated a member here.....but u have to visit a few and research them to find the right one for u.

I traveled out of state to get to a Dr as I found going to a few here, that they all do not have  the experience with this condition.

The list is in our Health Pages -http://www.medhelp.org/health_pages/list?cid=186

AS well as other helpful info on chiari....see lists on ?'s to ask the NS...activities to avoid....etc....

Know u r not alone in this journey : )

[derek1983]

also thought id add a bit more my p.a. seems to think its a stage one condition that i was born with but it seems to have escalated in my opinion in the past 3 years ive always battled with colds allergies etc so im constantly coughing various times of the year i get migraines atleast once a week lately ive noticed my legs will go numb tingle neck pain is something ive dealt with for a while but the passing out is my main concern i dont know if anyone else experiences this but it really scares me id hate to start coughing in the car and pass out and hurt someone else especially my children or another motorist and the doctors ive seen just push the chiari aside and try diagnosing me with other non related problems

[derek1983]

thanks selma appreciate the help just trying to sort this all out hard to find someone who understands in the medical field in my area ill be looking into a few of the docs on the list  have a great day :)

[selmaS]

  Look to when u go out, r u passing out, do u know u r going to pass out? Some of us do pass out and some have drop attacks where we go out for a shorter time then passing out, as we r aware, but can not respond or react.....

Keep in mind we r here, so ask ?'s when u need to or just vent...as we all understand : )

[derek1983]

i am def aware and its a short period of time just kinda black out i guess and intense pain in the back of my head its seconds that im out but it happens so fast sometimes i can run to the couch or something but sometimes i have to drop right then and there

[selmaS]

  So u feeling coming on....then u r passing out...with a Drop attack u feel fine, then the next thing u know u r mid fall with no idea as to y.....and u can not react....but u know what is going on around u.....

  Make sure ur Dr knows u r passing out....it is important, and try to take notice if it happens if u move or change positions or turn ur head a certain way, mayb too fast...?? This may help the Dr understand what is going on.

[derek1983]

i believe its from me moving my head forward with a coughing motion because if i try and control my breathing and coughing fits i can sometimes not let it get all the way to passing out just a fuzzy feeling with the same neck back of head pain

[selmaS]

  Make sure u r check for related conditions...such as POTS and EDS as they may play a role here....so many have found out post op after having set backs...it is best to check b4 and know so ur Dr can take precautions and u can be prepared.

[derek1983]

thanks ill look into those appreciate all your help

[selmaS]

  No worries...the Health Pages has some info on all of these, and we do have a  Group for EDS with more info in the group- links to videos by a Dr Driscoll who also has EDS and  she is very good  in how she explains it.