Hi and welcome to the Chiari forum.
We do not recommend Drs, but will help you learn about Chiari and we do have a list of Drs other members have used for you to use to research the Drs.
Keep in mind the firsts question you need to ask one of these Drs is do they treat children as not all do....next...does she require surgery at this point....ie- does she have a CSF obstruction, a syrinx...other related conditions.....
And of course- how many Chiari patients does this Dr see i a year, ,month, ,week,,,,?
I will bump the thread up with a link to the list of Drs.
Are there any Chiairi specialists in Kansas one would highly recommend for my six year old grand daughter?
I have heard that dr. Oro is quite restrictive if it comes to the surgery. It doesn't really matter your herniation is 2 or 7 mm although the difference is quite amazing I would say especially that it was measured by 2 so called chiari experts. On the other hand even if you are 7 mm, you can still be asymptomatic.
There are also other aspects. People that have underlying conditions tend to show off more symptoms but still it is better to treat all the problems instead of saying that your chiari is a bogus and your real problems is CFS for example.
TCI is of course an option. What about a university based NS in New Mexico (one on your insurance)? Even if s/he isn't known for treating Chiari, it might be worth a try since it's so much cheaper. This is what my neurologist is recommending for me...who knows how it will go. Since he knows the NS team at the local university, he was able to recommend someone who specializes in the base of the skull.
Tough decision for sure..I wish I could help you more!
You are not being a crazy person. This surgery is risky and is not something to be undertaken lightly. I am sorry that you have gone so long and been in so much pain. I hope that you get some solid answers at your next appointment. Keep us posted.
I've seen just about every type of specialist over the last twelve years. I've been diagnosed with everything from R.A., fibro, IBS, low blood pressure, hypoglycemia, cystitis, etc. and those were explanations that I was willing to accept and live with until about a year ago. The headaches, joint pain and fatigue matched up with the auto-immune type of diagnosis until I started losing strength and use of my right arm and leg. When my rheumatologist saw these changes he ordered MRI's of my neck and back. The C-Spine showed a 5-6mm Chiari ("boderline" chiari according to the Radiologist). Because I started having drop attacks, urinary problems and am walking with a cane on some days, I decided to consider surgery (thus the trip to see Dr. Oro initially). I don't have a syrinx or apnea or anything super serious like that as far as I know. I guess my real concern is that I could continue to lose what function I have left in my arms and legs if I wait too long. Dr. Heffez told me he couldn't say how much worse I'd get but did say he knew I would never get better on my own.
I live in New Mexico and there aren't any reputable NS out here so my only option I think is to get a third opinion at TCI - which is not covered by insurance and would be a pretty pricey trip. I guess the cost would be worth it since I'm so confused right now that I can't make any decision with any confidence since two renowned Chiari doctors have given me day and night diagnosis/recommendations. Uggh. I appreciate all of the input - I think my gut was telling me to just find a way to shell out the dough for the trip to TCI, but I needed some reassurance that I wasn't just being a crazy person!
I agree with lydelia...get a 3rd opinion. The rest of what I have to say is 100% my opinion and I know some will disagree but here goes:
What other doctors have you seen? Did they have any alternate ideas to Chiari at all? If you are only looking for CM, eventually you're going to find it. If you've been to every other kind of doctor and gotten 0 answers (not even a remote possibility!), then I definitely understand your dilemma.
Did Dr. Heffez say you should be in a hurry to get the surgery done? Did he say there are any risks to waiting (sleep apnea, heart trouble, syrinx)? If not, please don't rush into it. You should feel confident in your decision. Brain surgery, no matter how simple, is not something to be taken lightly. Too many people have this surgery, feel better for a little while, and then all their symptoms come back.
I just got back from seeing Dr. Heffez. He's the first person to say CM is a good explanation of my symptoms, and no one else has had a clue. It's been 2 years of constant pain and I'm still hesitant! I'm going to a 3rd NS soon...if at least one doctor agrees with him, I will feel so much better.
While I have not had any experiences with Dr. Oro or Dr. Heffez, what you are saying concerns me too. Two, touted and well respected Chiari specialists, giving such different opinions is nerve wracking. For my part, I would tend to lean more toward what Dr. Heffez said, since "You're Chiari can't be causing that," by Dr. Oro seems like a very uneducated, and really odd remark for someone who specializes in Chiari. My advice would be to get a third opinion, as much as that is going to suck, having to wait again to see what someone else says, when you have already seen two people.
I am sorry that this happened to you, and I want to say again, that I think a third opinion is your best option.