Primary Care Physician in NYC who is experienced with CM?

[BokkieNYC]

Hi there

My husband was diagnosed with CM in early 2010 after about 2 years of battling with his symptoms.  We now live in New York City (since 2009) and are trying to find a Primary Care Physician who has experience dealing with CM patients to handle all his "other" symptoms/illnesses.

Can anyone recommend one? We will check if they're on our insurance, we just need some names.

Thanks

[selmaS]

  Yes unfortunately I have and all of us have and the members here have dubbed that treatment as "The Royal Chiari Run Around"...Drs that do not listen or send u off to another dr and another....ugh!

I also went to TCI and had my surgery there...so ur DH  will the care he needs and I am sure they can offer some names of PCP's they have worked with in the area.

  Hang in there : )

   "selma"

[BokkieNYC]

Thanks for the suggestion.  

He is going to see Dr K at TCI next week, so we'll definatley ask him then.

Dr K was actually the first NL to confirm that DH has a CM.  We're still stumped that the CM was noted on his MRI back in 2008 but NONE of the NL's or docs we saw since then even bothered to look into it. Eventually we decided to do the research and contact the Chiari specialists ourselves.

At the very lest we would like to find a PCP who is willing to learn, but so far none of them take his current Dx and symptoms into account when treating him for other minor stuff.  It's like they don't even listen :(  

I'm sure you've been through this personally.  Seems to be a recurring theme to having CM.

We will persevere tho.

[selmaS]

  Hi and welcome to the Chiari forum.

Being in NY u r close to The Chiari Institute in Great Neck and they may be able to offer some names of PCP  they have worked closely with.

Not all PCP's will have the info, and experience to help...and u may have to help educate them...mine is open to learn and is doing a better job then most NS's and NL's I have seen.

U will also want to find a good NL in the area, and they may help u find the PCP that is best suited for ur DH.

   "selma"