So, I was wondering who is out there from Virginia and can let me know your experiences with the Doctors out here. I have seen one in Richmond that was no help at all and have another in mind. Any input would really help. My breathing issues are really becoming a bigger annoyance than previous and had some sort of arrhythmia stuff going on the other night. I just want to see someone who is not going to just send me home with no new tests done
Thanks.
Lidia
I actually found a NS who works with the O & P company I work for. I just don't know how much experience he has had with Chiari. But I made the appointment to at least have him check me out after I get my MRI and can order the CINE. I so appreciate and love this website and can talk to so many people who can give me some sort of direction, relief and comfort with what we go through sometimes on a daily basis. I just wish the doctors knew more about our condition so that we didn't feel like a hamster on a treadmill. LOL, but maybe someday.
Thank you I certainly will :)
Lidia
I hope so, I will find out in 3 weeks. So far away being that I haven't slept in about a week due to my respitory issues for the past week that have resurfaced. Maybe they will go away by then lol! I will definitely keep you posted on my MRI and visit. Hopefully it will be good and he will be a good reference for people in my area of VA who may need to see someone.
Hope you are having a pain free day! :)
Lidia
Where in VA are you?
I am in Newport News
Oh. I’m in Northern VA. I have found I have to travel a couple hours at least to find chiari specialists. The 3 I have seen so far have not really impressed me. My next appt is with Dr Henderson in Maryland.
Oh. Yeah, I have been to Richmond to see one NS and he asked me why I was there. I told him to monitor my CM and he basically told me that if I don't need surgery he can't help me. No further testing, No new MRI! Nothing! Just basically that I was wasting my time and his. I have a NS appt. here in Newport News next week with copies of a new MRI to bring and see if I can get a CINE MRI. Hopefully he can do further evaluation. I just need someone who knows what to look for and not make me feel that I am just rolling along to the next dr. Get's kind of expensive. lol Let me know if you find someone there. I would travel to MD. Maybe make a weekend out of it too. Haha.
Good luck with your visit. :) Keep us posted.
From the people I have talked to in groups on Facebook etc, he is loved by his patients. People travel from all over the country and Canada to see him. The issue is, he doesn’t take insurance so you have to submit for reimbursement. It’s going to be expensive, but after seeing the other three, including one at UVA and one at NIH, I feel I have no choice. This is something I’m not willing to settle on. I have not heard one bad thing about him. He speaks at all the big conferences. I found some u tube videos of him speaking at a chiari walk last year and he was great. He actually seems to BELIEVE where most other docs don’t. If you look for the videos, they are posted in three parts. I guess they couldn’t fit it all in just one. If interested, I would consider getting the ball rolling cuz his wait time can be a bit long since he is so sought after. He wants you to get upright flex ion and extension MRIs before your visit so he can review them with you. I don’t think you will be disappointed.
From the people I have talked to in groups on Facebook etc, he is loved by his patients. People travel from all over the country and Canada to see him. The issue is, he doesn't take insurance so you have to submit for reimbursement. It's going to be expensive, but after seeing the other three, including one at UVA and one at NIH, I feel I have no choice. This is something I'm not willing to settle on. I have not heard one bad thing about him. He speaks at all the big conferences. I found some u tube videos of him speaking at a chiari walk last year and he was great. He actually seems to BELIEVE where most other docs don't. If you look for the videos, they are posted in three parts. I guess they couldn't fit it all in just one. If interested, I would consider getting the ball rolling cuz his wait time can be a bit long since he is so sought after. He wants you to get upright flex ion and extension MRIs before your visit so he can review them with you. I don't think you will be disappointed.
http://metropolitanneurosurgery.org/practice/henderson.html
These are tests he wants patients to try to get before coming in so he can see big picture:
IMAGING TESTS FOR NEW PATIENTS:
To have insurance companies cover imaging tests, patients must see Dr. Henderson first to receive a script from him. New patients may get the MRI and/or CT-Scan listed below by having their local doctor prescribe them. This way, the patient may have the tests performed locally or they may fax the scripts (written by their local doctors) to the Washington Open MRI and/or Bethesda MRI for the CT-scan, and contact these facilities directly to make an appointment before their appointment with Dr. Henderson.
Thank you so much for that info. I am going to keep this info incase Dr. Kostov can't help me so that he can write the scripts for me and I will get on his wait list. I will do anything at this point to see someone who actually participates in the studies of what we have.
No problem! In case I forget, reply to this or send me a message or something and I’ll let you know how my appt goes 10/30 if you remind me lol Let me know how yours goes too. Do you just have chiari or do you have other issues as well? Syrinx?
I only have Chiari. So far anyway, lol. Hopefully that's the only thing. With all the symptoms I get, this surely is enough. :D I will let you know next week how my appt goes. Should take a few days to get my MRI back then I go to NS. Fingers crossed no surgery needed.
Hope you are having a great day!!!