Best Neurosurgeon for Chiari

Question

Does anyone know where Dr Xiao Di formally of the Cleveland Clinic has gone? We were told by the Clinic he would contact his patients in January but it is now March and there has been no word from him,  Does anyone have any info?
Also is anyone familiar with a Neurosurgeon from PA Dr Jho?
Thanks for any info.

Whyspers · Answer

long time but here is the answer
http://www.cmpwlaw.com/medical-malpractice-verdict-cleveland-clinic/

Viva001 · Answer

Hi Pam, can you put me in touch w/ other patients of dr. Rosner?

selmaS · Answer

Hi and welcome to the Chiari forum.

 May  I ask  what symptoms from ur TC u deal with on a daily basis?

  Did u notice a significant decrease in symptoms after ur PFD?

 U may want to check out other chiari specialists to get opinions from...we do have a list of the members drs, not all r true chiari specialists but have successfully treated a member for chiari.

  FYI- TC release surgery is very controversial...even among Chiari specialists u will find a difference of opinion.

hilzem · Answer

Dr. Di did my chiari surgery in June 2010. He did a wonderful job. So far, everything is good. He was supposed to do the surgery for my tethered spinal cord but left the clinic. Dr. Luciano was supposed to perform the surgery, but told me it was unnecassary at the time. I'm not sure I like him. I have a follow up appointment with him in June. I wonder what he will say this time.

ajunebug · Answer

I'm sorry to hear about your son's surgery and need for more care. I hope he's better soon and you find a good doctor.

I am on a Facebook group for Dr. Di's patients. It's called the Xiao Di Fan Club or something like that. Do a Facebook search for it and it will pop up. Anyway, there was a big outcry when Dr. Di left with no explanation, and his patients started searching and talking to each other to figure out where we went. One of his patients ended up calling the state of Ohio medical board to get his contact information, and she called his personal number and talked to him. Apparently he let her know that he's left Ohio and will be setting up his practice in Kansas City in 3-4 months. This was in mid-February or so. I'm not sure if there's been any official word since then about where he's been. 

I also called the CC and sort of badgered the nurses there and they told me to "check the internet" for information. The CC is not divulging where he is because they want to keep their patients. They said they would send out letters saying where Dr. Di was going, but nobody got one, they just got letters saying he was leaving. Dr. Di was unable to contact any of us because the CC said our records were their property. So unless his patients are internet-savvy, I'm not sure they're ever going to be told where he is. It's a really frustrating situation. Like you, a lot of us had appointments or even surgeries scheduled with him. I don't think anyone has confirmed this, but it seems like him parting ways with the CC wasn't entirely amicable -- or else I think they'd be more forthcoming about where he is. Personally, I think it's super crappy of the CC to not tell us where he's going, since he is a Chiari expert and does the surgery endoscopically - we all know there's not a lot of neurosurgeons like that! They totally suck for leaving people in a lurch. But, that's what you get with them - they really are just concerned about keeping their patients, I don't think they care that we're in pain and lost our specialist. You know?

RitaN · Answer

Thanks so much for your response. If I might ask where did you hear this info?
My son was actually scheduled for surgery with Dr Di today.  Three Neuros looked at him and were all in agreement that too much bone was removed during the first chiari surgery 11 years ago. We choose Dr Di for his skill and expertise and also CC's reputation. We live in Massachusetts and my son is in college in California. Dr Luciano looked at the Cleveland scans and is not in total agreement with Dr Di or the other 2 but has agreed to look at the other scans that seem to be missing from my sons file at CC. We should hear back from him next week. I'd love to hear how your appt with him goes.

ajunebug · Answer

Yes, he's going to Kansas City, MO. I don't think he's going to begin his practice there for a few more months, and no word what hospital he will be with yet. He was my NS too and I was/am so bummed out that he left, especially because I'm in the Cleveland area! :( I am going to see Dr. Luciano in a few weeks. I heard he's a little bit of a jerk, but I'm going to try not to judge till I see him for myself. In any case, he apparently trained Dr. Di and does a similar endoscopic surgery. 

I don't like dealing with the CC either, they are a pain in the butt sometimes! But they are very well rated and have a great financial assistance program for those people in need/uninsured. 

Good luck in your search! I also hear good things about Dr. Tew in Cincinnati.

lu7997 · Answer

Kansas city is what I heard.  I am so sad.   I do have an apt with dr prevedello of OSU.  I will update what I find out.  My apt is next week.   I also scheduled with CCF for dr dis replacement.  But that isn't until the end of June. And I am just not thrilled with cleveland other than Di. I have had some bad experiences.  


Good luck I hope u find some one

octam · Answer

We are seeing Dr. Ben Carson at Johns Hopkins in April - does anyone have experience with him?

RitaN · Answer

Hi Pam
Thanks for the info. Where did you read this?  I heard Kansas but cannot verify.
Did Dr Rosner do surgery for you  and was it successful? thanks for your input.
Rita

pamk5 · Answer

I have heard that he is moving to Missouri.  Just something I read.  It could be or not be true.  I havent heard of Dr Jho.  I see Dr Rosner in NC and he is wonderful.