Recent info/experiences with Speciality Chiari clinics

[jonzkat25]

Just had  MRI 's of brain on down to the tip of my spine,(with and without contrasts) ordered by local (Sarasota, FL) NS.  Shows a Thoracic syrinx, and he says go to Physical Therapy for back pain, and come back in 6 months to do another series of MRI's.  But I have, constant headaches, dizzy, brain fog. He said that I need to go to a Neuro for those symptoms and gave me some local Drs, but I feel that I need to get to a specialist ASAP, I have BCBS/PPO and don't see that insurance listed for the clinics in Wisconsin, Iowa, Colorado, and couldn't find insurance listed on the UCLA site. Anybody have any experience with BCBS at a Chiari Speciality Clinic?
I am so glad that I found this forum, I already found answers to some questions in past posts. This is such a blessing not to feel so alone.

[selmaS]

  I sent u a PM and u should be able to reply to it......

DO u have the copies of ur MRI? Just wondering if it is easy to see if u have a herniation....many times it is something we all can take notice of if u have the right slice....

I remember saying those exact words after I had 2 bad visits in a row....I said to my DH I will not go to another one unless I know they really know chiari.....we should not have to go thru all this when we feel like this....ugh

[jonzkat25]

My dx is a thoracic syrinx, and yes I would like to know more information, but when I tried to PM you,  it wouldn't go through :(  Not sure as to why?
Want to use my email?
Good point as whether I will even be accepted at Dr Oro's clinic and I'm guessing that it might be the same at the other speciality clinics too?  I sure have so many of the same symptoms as Chiari's, but my MRI's showed just the syrinx.. ?? I know one thing for sure, I'm not wasting my time going to anymore NS or NL that aren't experienced with this!

[bagheesmom]

Dr Oro is also a specialist that will only see Chiari patients if they have the minimum of 5mm herniation.  FYI. I dont know know about just a syrnix.

[selmaS]

  If u r considering those 2, GO to DR ORO!!

I will not explain my reasons on the public forum, but u can PM me if u want to know more : )

I went to the conference back in '08 and considered going this yr too, not sure I will make it tho....$$$

DO u have a dx of chiari already or are u looking for a dx? if so u may not get in either place....it all depends on what ur MRI shows and what ur dx is....

[jonzkat25]

Well your experience is encouraging! Please keep us updated on how things are going. Take care and thank you so much!

[jonzkat25]

Yes I do feel  that it should be ruled out.   There are changes that I have noted since I started keeping  a daily record of my symptoms, activities and such.  At first they seem unrelated until I read some media coverage from the clinic in Wisconsin- Milwaukee/Dr Heffez, and I started  putting two and two together. I considered attending this years ASAP convention, to get a chance to educate myself more, but I won't have enough time to take off from work and still make a  trip to see a specialist too, since I am worn out looking for anyone locally that is knowledgeable/qualified and experienced.
Have you any knowledge/or past feedback regarding the clinic in Wisconsin? Also I have read very, very good things about Dr Oro.. I am so worn out, I dont think that I have the energy to go anywhere that is going to be a battle just to be seen.
May I ask your opinion between those two? Sorry for the long post, I really appreciate your time and concern!

[bagheesmom]

I was just seen at Dr. Oro's clinic last week for my consult (june 11-13). I faxed them my MRI report, got a return call in 5 days to schedule. It took 6 weeks to get in for my consult with him. I didnt think that was bad at all, it takes me that long if not longer to get in with someone here at home.

[selmaS]

  Hi and welcome to the Chiari forum.

I see u got quite a bit of info already, and some Chiari specialists do not work with ins, but the clinic and or hospitals they work with do...so many times u pay out of pocket for the office visits and everything else is covered...do contact the Drs u r interested in and speak with the billing officer and ask what u would be responsible for.

I am curious as to y u r looking for a Chiari dr, when ur dx is a syrinx...looks like u did a lot of research already to know they r linked....

Just wondering if u feel u may also have chiari?

[Viva001]

Also keep in mind that there are some very good Chiari specialists who don't belong to a clinic.

[linnielou232]

Wanted to answer your question about where I found my NS.  I was blessed enough to find a specialist only a couple miles from home so it made things so much easier for all of us.  I do know a lot have to travel, but worth it.
Linda :)

[jonzkat25]

Thanks for the information, I just looked over that site and it's very encouraging. The only other clinic that I have found that is a provider for
BCBS is in Wisconsin. Did it take a long time to be scheduled for the consult?
He seems like he is the expert, from what I found on him when I googled his name! Wow! Thank you so much for the information, so glad that it worked out well with you going to him!

[jonzkat25]

Thank you for your prayers and advise. Unbelievable support already from this forum! I am so glad that you found some relief and are feeling better. Did you travel or did you find your dr locally? I am so confused as to where to start after the first guy's lack of  interest! Thanks again for sharing.

[Rylanesmom]

http://chiaricare.com/

His website:)

[Rylanesmom]

Yep I have bcbs and had surgery by he amazing dr John Oro in Aurora Colorado.  You should call them and fax your reports over.  They will evaluate them and if they feel you should be seen they will schedule an appointment.  He is a true chiari specialst and is amazing.  Usually a syrinx with chiari leads to surgery.  If you are symptomatic I would not be omfortable with PT or waiting.

[linnielou232]

Most of us know the NS run around.  I left 1 NS and knew right away he wasn't for me, the other just said I wasn't a surgical candidate.  "What?"  I was in misery.  I finally found one that listened, explained, and did my surgery and I'm much better 2 yrs later because of it.  Just be persistant.  You know your body and you know how much you can take.  This forum was a answer to my prayers also at the time of dx's.  I found so much info, support and understanding.  We all have our difficult days and it is nice to talk to someone who understands. Your in my prayers.
Linda :)

[jonzkat25]

No, surgeries- just found out that I have a syrinx. And you are so right about the 'cat and mouse game' that is exactly how it feels at this time! LOL! Just really hoping to get some input about recent experiences at the various clinics here in the States. Keeping my fingers crossed that my insurance won't be a problem. Thank you so much for the encouragement, bless you!