New to this site and set of forums

I live in Missouri and I feel so alone out here lol. NO ONE I've spoken to (aside from certain doctors) has any idea what an AVM is! Would like to know if anyone knows of really good neurosurgeons in or around Kansas City, Missouri or Columbia, Missouri! Would be great appreciative if anyone has any ideas!

I live in Missouri and I had my embolisation at Barnes Jewish, which is #9 on the list of top hospitals. I think it is the one of the best in the Midwest. The other good hospitals are Case Western and Cleveland Clinic but I think out of the 3, Barnes is the best. I will find the list on this website and see if any hospitals in Columbia, Missouri are on the list but I doubt it.

I found the list(btw the list posted by Louisa). Best hospitals in the US are: #5-Clevland Clinic, #9-Barnes Jewish, #11-Northwestern, #22-Univ of Kansas Hospital, #28-Cse Hospital, Cleveland. Im too tired to look up Columbia, MO and I would be shocked I’d they made the top 100.

I am sketchy with Barnes Jewish as that's where I had my high risk appointments with my last daughter and I was NOT pleased with the treatment and care I received there. The people were nice enough, but I think the doctors that were in care of my daughter and I were careless, from what I've experienced. I won't say that perhaps the neurology department isn't better, but that's also 4 hours from where I live and I hesitate from my own personal experiences. I was told with my last daughter that I would be fine to have her naturally if they used forceps and/or a vacuum to help me. My few symptoms only got worse after having her where as they were minimal to nil before. Also from what I've gained from my neurosurgeon now, having her like that screwed up the one embo I did have and loosened it or got rid of it almost completely (I'm terrible with technical jargon lol). So I'm just very hesitant.

Well you have to go for the hospital and Doctors you feel most comfortable. Maybe you should interview Doctors at the University of Kansas Hospital. Did you see the US News thing that Louisa posted?

I did, I didn't see my doc on there, but it was late and I was half asleep lol. Thank you for the advice by the way. I wasn't trying to be rude and apologize if it came across that way. I just am very iffy about that place. I intend to call his office and speak to him soon. There IS a place on that list, or a doctor I should say, that's about the same distance as Columbia and I was thinking about calling and talking with him as well as another opinion.

No, you didn’t come across as rude at all. I wish the best for you.

Thank you hon, sometimes when I write things I have to keep the flow or forget where I'm going with something. Then when I go back and read it, it seems like it was rude lol.

If you are willing to make the drive, the Doctors in Omaha, NE at UNMC are absolutely wonderful! My neurosurgeon helped put together a "team" of neurologists for me. Each doctor in the Neurology department goes over every case together and the nurses are absolutely wonderful!

Hello LotsToLiveFor! You are not alone. I see this was posted well over one year ago, and I hope that you are well--please update us! I know what you mean by AVM ignorance. Heck, I had never heard the term until it happened to me. It is also termed a stroke, but people seem to stop listening when they hear the word "stroke"--they think I had the more usual kind that everyone is familiar with. I come to enjoy educating people briefly about AVM. I no longer use the term "stroke" and instead use "AVM". Best wishes and I pray that you are doing well!

I live near Wichita KS and have also ran into that. My husband has actually had to explain what my AVM was to some doctors when it showed on film. My surgeries took place out in CA and when I came home it was difficult to find a neurologist who would play second fiddle by reporting to my Neurodurgeon in CA so I finally asked my Dr. In CA to recommend a dr and he did. That Doctor happens to be from Ponca City OK but had a couple satellite offices within 30 minutes from me. I am still with that neurologist today. It surprises me that you are having such a difficult time in Kansas City I would have thought they would be more advanced there. Good luck and God Bless.