Aa
Aa
A
A
A
Close
18601554 tn?1467203337

Primary Care (NY) who understands Chiari?

I am looking for a primary care doctor to help coordinate my multiple doctors I see for Chiari Malformation.

I regularly have appointments with an edocronologist, cardiac specialist, pain specialist (all in Poughkeepsie where I am located near) I currently am having GI and gynelcological issues which I have not figured out yet. As you may know it gets complicated to coordinate care with Chiari. Also, my chiari specialist in Great Neck, NY, Dr.Roger Kula.I am looking for a primary care who KNOWS about chiari, doesn't TREAT it, but has seen it before. Sometimes I feel like I am speaking a foreign language to my current primary care doctor. =/ So for the last several years since neurosurgery, I have been acting like my own primary care doctor- which is NOT working out well. Overwhelming since I am currently in college and of course have a life beyond Chiari!

Thank you!
-Michelle
4 Responses
Sort by: Helpful Oldest Newest
620923 tn?1452915648
COMMUNITY LEADER

  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....
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER

  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.
Helpful - 0
1 Comments
Thank you for your support, Selma!
I have not heard of Dr. Francamono! Is there anything you may try to help treat symptoms of EDS? Before you get to this appointment? I was only diagnosed with it last appointment, and Dr. K said it was not severe.

Yes, I do have POTS and EDS as well, as Dr. K told me. It seems many of my other diagnoses all trace back to Chiari. Although when something seems strange it is easy for Chiari diagnosis to become a catch-all when a dr does not know enough about it. They do the technique of "not my specialty- not my problem!"

So I feel that I end up being pushed around everywhere! I am still looking for primary care drs in my area. I have been having severe lower abdominal pains- after having an upper endoscopy, colonoscopy, they will do a laparoscopy soon to test for endometriosis- not sure if they could be related to chiari at all. It is too much to do on my own- and still crossing my fingers that SOME kind soul will be able to take me on as a patient! I wish you the best of luck in dealing with chiari, these dr appointments are very important and our life is well worth it.

I have found regretting having the surgery, it's hard to just settle this fight in my mind and say "it was the best decision at the time I could have made." I just feel it's caused extra symptoms that I need to take care of, including all of the debilitating previous symptoms!
18601554 tn?1467203337
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.
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER

  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?
Helpful - 0
Have an Answer?

You are reading content posted in the Chiari Malformation Community

Top Neurology Answerers
620923 tn?1452915648
Allentown, PA
987762 tn?1671273328
Australia
1756321 tn?1547095325
Queensland, Australia
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease