It really depends on how the EDS may be affecting you as to what you can do....it can cause headaches....which many think is caused by the Chiari but it can be the EDS.....I tend to have my ribs pop out of joint a lot and am able to get it back into place by myself.....if I had some really annoying issue I would see a Dr for it but for me, now, I am doing ok handling my EDS.
But it is important to know what type you may have ...especially with POTS.....as the heart can be involved and it would be difficult to know what is causing what symptoms with you,
Endometriosis is related to EDS as it can cause scar tissues to form and that is what endometriosis is.......
It may be other underlying conditions rearing their heads and not the Chiari giving you the lasting ones....How long since your surgery...I know you said a few yrs....
Oh ok...did he refer you to Dr Francamono in Baltimore?..That is where they sent me to get a more detailed EDS DX.....I have yet to get there as it was more then a year wait and I do not drive to find someone to commit to drive that far out is not easy.....
I was lucky in that my Dr is always willing to learn something new, and did so as soon as he heard my DX.....and bcuz of it I did not need a local NL either ....he takes care of everything for me.
If you have POTS and possibly EDS it is those conditions causing your symptoms not the surgery ...and you may have helped in more ways then you can imagine right now.......I still have some symptoms now but mostly if I over do it or weather related....but I am able to do more now then I could have a few yrs post op or b4 surgery....so I know surgery was the right thing for me....but I had times I wasn't sure either...it can take time especially if you do have EDS to heal from this and see all the benefits.
More than one chiari patient is very helpful, as I found that when doctors saw more than just me with CM they were more driven to research it. My current primary has no interest, so I think my best bet is to look elsewhere. I have been diagnosed with POTS and Dr.K said I may have EDS and may not, he said he is uncertain. I'm just really regretting having the surgery now with the slew of symptoms I still have on top of it!
I live almost 2 hours from Great Neck , New York- not far by any means but not able to have a primary care locally. (He only had suggestions for local doctos) There is westchester medical which is not far from me really- and they had good doctors I saw as a child at that center.
Hi Michelle and welcome to the Chiari forum.
Dr K is a neurologist and not a Chiari NS, but I know he is well informed with Chiari.....may I ask, have you also been DXd with any related conditions like EDS? Dr K DX me with it....but I do not live in NY,,,,,so I can not help you with a PCP....What I have done is work with a PCP that was willing to learn....and that to me is the best you can have....mine does research and now has more then just me with Chiari for a patient...
I had my surgery in '09 and I am much older and it may have been a longer time for me to heal and I do have related conditions which also have continued to cause me symptoms.
Can Dr K advise you on a PCP that he knows , knows about Chiari?