Chiari Online Support Group

Member Recommended Doctors - PDF File List


#21

Shared on 20 of my other Chiari related pages on FB WITH a link to this group and giving you credit for the list. Also asked that anyone else sharing give you credit. Would be surprised if you didn’t see some new members shortly :wink:


#22

I have seen 3 so far and have not been super impressed. Finally bit the bullet and scheduled to see Dr Henderson at the end of October. I’m terrified that he doesn’t participate with insurance, but after my experience with the other 3, I didn’t see where I had much of a choice. I’ll do the first consult and go from there. If I’m lucky maybe I’ll be able to convince my insurance to reimburse at an in network rate if I whine enough :slight_smile:


#23

And not a single one in Maine... surprise. lol


#24

Just reading that Dr. Nathan E. Simmons and Dr. Perry Ball at Dartmouth Hitchcock Medical Center (Lebanon, NH) "specialize in the treatment of patients with Chiari Malformation" Anyone here have any experience with them?

http://patients.dartmouth-hitchcock.org/neurosurgery/spine_and_pain_management.html

Raist, that might be an option for you if you don't want to chug into Boston/MGH/Tufts.


Raist said:

And not a single one in Maine... surprise. lol


#25

Thanks Mandy! I totally missed his name the first time I looked through the list. Bad brain! ;)

Mandy said:

Dr. Ball is on the member-recommended list for Dartmouth Hitchcock Medical Center, I haven't personally heard anything about them, but it's great that more surgeons are specializing in Chiari. Thanks NHMom :)


#26

Dr Trumble Orlando,fl is a Godsend best chiari surgeon ped/adult both


#27

I will agree with Vonda,I too had a small herniation and a hard dx to make.If you do your homework and know the symptoms of chiari,you must research the specialists for yourself too.You can get some very good advice from lots of people on the site but you have to advocate for yourself.I fell through the cracks for many years.I was doing all I knew to do but I didn’t have anyone to help me and the Dr.s in this area was absolutely no help at all,and I suffered for that reason,finally I found Dr. Rosner on line.I had finally got a computer and that was my salvation,I found this group about the same time I found my NS.The list of former Dr.s was so many that I had lost count 20+ because of their lack of knowledge in the chiari field and especially chiari 0 no matter where I went I was treated as if I was a crazy person. After researching the chiari symptoms I had made my own diagnosis but needed that specialist to confirm it and eventually he did and did decompression.


#28

Hi Lynn Messer-Just wondering how you're doing these days. When was your surgery? Who did you go to? We'll probably need a follow up surgery & I'm trying to figure out the best way to go with it. Would like as many doctors' names as possible from others who have been there & done it. We'll probably be returning to Heffez, as we both have the greatest confidence in him, but I believe that his office is going through some changes & it's complicating the issue. Also, the traveling is a real difficulty for us. I don't have a lot of confidence in many neurosurgeons & because yours was a Chiari 0, I would really appreciate your input.

Lynn Messer said:

I will agree with Vonda,I too had a small herniation and a hard dx to make.If you do your homework and know the symptoms of chiari,you must research the specialists for yourself too.You can get some very good advice from lots of people on the site but you have to advocate for yourself.I fell through the cracks for many years.I was doing all I knew to do but I didn't have anyone to help me and the Dr.s in this area was absolutely no help at all,and I suffered for that reason,finally I found Dr. Rosner on line.I had finally got a computer and that was my salvation,I found this group about the same time I found my NS.The list of former Dr.s was so many that I had lost count 20+ because of their lack of knowledge in the chiari field and especially chiari 0 no matter where I went I was treated as if I was a crazy person. After researching the chiari symptoms I had made my own diagnosis but needed that specialist to confirm it and eventually he did and did decompression.

#29

Vonda,my NS was Dr. Rosner in Hendersonville,NC he is one of the pioneers in the chiari field.I am haveing some difficulty with dysautonomia symptoms,breathing,sleeping,heart and blood pressure problems.My MD has given me a beta blocker to regulate BP&heartrate,things seems to be getting better since I’ve started on the medication.Dr. Rosner dx mine even though it’s hard to deal with when it’s a very borderline case.I would have not been able to have gotten any help at all if not for his expertise.The only complaint is the charges they’re off the charts!! There’s not words to describe how wonderful it was to finally find help,mine was a long journey…28yrs.If you have a chiari with a small herniation the reg. Neuros can’t dx it,anything less than 5mm they won’t acknowledge as symptomatic.I am here to tell anyone that that is a wrong measure for dx.That’s why so many are suffering,it is just wrong!I can’t say I am smarter than the Neuros they are knowledgeable but because of the road I’ve walked for so long, experience means more than head knowledge.Hope you can find the right path to take,you’re in my prayers.


#30

Another recommendation - Dr. Khaleed Aziz, Allegheny General Hospital, Pittsburgh, PA


#31

I would like to add Dr. Anthony Capocelli to the recommended list. What an incredible blessing for us in central Arkansas that he is now here in Little Rock. My son had decompression surgery 8 years ago at the Univ of Chicago and it was well worth the trip. Dr. Frim is an amazing surgeon and I would highly recommend him for pediatric patients. My son is now 15 and we saw Dr. Capocelli for follow up last week here in Little Rock. It's an amazing experience to talk with a neurosurgeon whose clinical interest is Chiari and who keeps up with the current research. Our experience with other neurosurgeons in this area have been either terrible or unimpressive. I can't emphasize enough how important it is to find a surgeon whose clinical interest is Chiari. Any neurosurgeon can do a decompression and will consider themselves very competent at it. They may even do several a week, but if they aren't keeping current then it's likely they are following old protocol. They may have been trained last year, but it's likely they were trained by surgeons using outdated protocols. It makes a huge difference. Your primary care physician will likely have no clue that this is important because they were taught that Chiari is no big deal. Ask lots of questions and do your research!


#32

I would like to recommend Dr Glenn Harper in Round Rock at Seton Williamson.

He has been absolutely amazing in the whole process. He has a great bed side manner and actually keeps up with research done on Chiari.

There’s another doctor in the Austin area at Dell Children’s Hospital that is amazing. He’s led several workshops on Chiari. I cannot think of his name, but when I do, I will post his name.


#33

Where is the list of doctors?


#34

Hope, you need to look at the Doctors List under Chairi Info for Members. HERE is a link.


#35

Don’t know if Any one has Posted yet,Dr John Oro in Aurora Colorado Retired in 2015


#36

I’d like to post my surgeon. Dr. Jason Voorhies. He was out of Toledo, OH. Recently moved to Fort Wayne, IN. I’ve been out of surgery 1 year and 3 months. He was very good surgeon. All my follow up visits he was direct and straight to the point. Got me back to “myself” as quickly as possible. Great surgeon!