hi all, is anyone else finding it difficult just to find a doctor? i have reffered to your list. 1 doctor only sees children, the other doesnt accept my insurance. & 1 does not pick up the phone & i have been playing phone tag for over a week, although i think they do not accept my insurance either. i want to give up at times. This would br for my 2nd opinion. i absolutely love the 1st doctor, but he doesnt specialize in skull reconstruction & works out of a hospital that rarely does these kind of surgeries. I live on Long Isalnd NY. also, does anyone have experience with Lyrica?? my doc prescribed it to help with the pain, but it makes me very shaky & not sure it is helping
thank you razzle51, there are only 2 left on that list that i have not yet tried, but i will. appreciate it!
thanx, i will try him, the others didnt pan out, aiying for 1 to get back to me, but having trouble contacting 2 of them
Dr Henderson is Great. He doesn't participate with Aetna. Who is your Insurer? When I contacted the New York-North Shore Chiari Institute for a Member they only participated with one National Insurer, I see on their website they are expanding their Insurer participation so they can see additional patients. Please let me know if you cannot find a NS that fits your needs. I highly recommend Dr. Henderson. I am working with his office for another Member at this time and they have been really nice and willing to work with out of network insurer's and patients.
Thanks again for your reply, razzle51. I think i found someone. Dr. Insinga at the chiari institute. I hear good things, so hopefully this pans out. It is truely amazing how many doctors wont even get back to me!
I should have known that wasnt the end of it. Dr. Insinga takes my insurance in his office, but not in the hospital! I set up an appointment & will take it from there. Like i said, I love my original doctor, but he is a neurologist & doesnt specialize in chiari or skull based surgery. Also, i was very upset when i called his office to set up another visit because i have amassed a long list of questions (which i thought is reasonable) & was told i can only see his assistant from here on. I had to literally fight for the appointment with him, as i have no reason to discuss a surgery with someone who will not be performing it. As much as i like him, i am not sure he is right for me if thats the way its going to be
Call DR Souweidane at Cornell NY Presbyterian. Dr Sen, chandranath is a very good NS too but Souweidane did mine (I had the works, craniotomy, duraplasty and double laminectomy)I cannot tell you how gifted this guy is with chiari. He is not the kind to sit down unless you force him to-ie:ask him to sit down and really explain it if you need him too. However, his NP is AMAZING!! She can tell you everything you could possibly need to know about whatever procedure you are having done. Good luck! Oh! I hear McKhann at Columbia Pres is amazing too…
thanx kat. I called dr. souweidane. the guy said he would call me beck in a few minutes, & surprise, no call! but i looked into it, & he doesnt take my insurance. neither does mckhann. I am very linited with who does take it & half of them are like 72 years old & dont practice!!! i do not have out of network benefits. i do like dr insinga, butsince his opinion was so different from the other NS, i dont feel comfortable unless i talk to someone else. this is next to impossible.i cant afford to pay out of pocket & im obviously going to lose my job when i get the surgery. ugggggggg
I also couldn't find a "real" chiari specialist within my network, and I asked my family physician to write a letter stating that i've been bounced from doctor to doctor, and it was necessary for me to go out of network. Called my insurance, asked for a case manager, submitted the letter.......and within 3 weeks a financial contract with my insurance and Cleveland Clinic was made, so I now have an appointment at the cleveland clinic this month. You might try that.
Did you have out of network benefits with your insurance?or did they make an exception? I do not have out of network benefits & my insurance is straihjt out of the rainmaker! they dont pay bills they are supposed to pay & constantly tell me they have been paid! Thanx for the tip, I will try anything, but I wont get my hopes up
No, my insurance has NO out of network benefits...... However, I was told by an attorney, and I relayed the message to my insurance, that I am entitled to proper medical care, and to deny me so would potentially result in a lawsuit. I had been bounced from various NL's and NS's all with a different diagnosis and treatment plan, and all ignored the MRI results of Chiari Malformation. With this information, and the letter from my primary care physician, my insurance hooked me up with a case manager, and from there it took about 3 weeks for my insurance to get a financial contract with Cleveland Clinic for my upcoming consult. After that, whatever is decided will take another financial contract between insurance and Cleveland, but should happen more quickly.
Hope this helps you. You have to stand up for yourself, because no one else will.
jessica said:
Did you have out of network benefits with your insurance?or did they make an exception? I do not have out of network benefits & my insurance is straihjt out of the rainmaker! they dont pay bills they are supposed to pay & constantly tell me they have been paid! they SUCK!!! VYTRA SUCKS!!!! Thanx for the tip, I will try anything, but I wont get my hopes up
yes, thank you. it does help. You apparently are going through the same exact thing I am. I will look into this. thanx again & good luck!
Have you contacted your insurance and asked for a network exception? Always worth a try. I have to fly my daughter 2 states away for care. No fun, but if that’s what it takes then so be it. I wish you both the best.