Has anyone been to Dr. Oro?

[denverluv]

Hi! I am newly diagnosed (last week) and through searching through different forums I found out about Dr. Oro. The same day I called my PCP to tell them to send my referral to him. Anyway, I am not sure if they have yet, but in the meantime, has anyone here seen him? How is he? How long did it take you to get in to see him? I am my PCP has put in the referral because even though I was just diagnosed, I spent three years going to them and the ER with my syptoms untill they finally did and MRI - I am at the point of exaustion from the symptoms - I just want to see a DR. that knows about this and can help.

[tmcaot193]

I AM AN OCCUPATIONAL THERAPIST AT TMCA AND I TREAT DR. ORO'S PATIENTS AFTER SURGERY. I CAN TELL YOU THAT HE IS AMAZING AND "THE GUY" FOR CHIARI SURGERIES. WE HAVE GREAT SUCCESS. WE HAVE CHIARI PATIENTS UP AND MOVING THE NEXT MORNING.

[denverluv]

Ok no  I never been DX with that and I don't think I have that - I think I developed a sensitivity to the rods themselves - I think they were those old school metal rods? Anyway, I am not sure if I ever really had a sensitivity to them - I just know my back was hurting. It's a mess - a few years back they said I had DDD - then last year they said nothing was wrong with me - but now that I think about it - it was two students going over my case - I only saw the doctor one time - when she said she saw nothing wrong with me. She said that my lower spine had some curvature but they would not operate because I would not be able to move my pelvis and as a young woman sexually that would not be good. Ok. So - I told her that was really strange because I never had a curvature in that spot before - it was the middle of my spine - I mean, really, I know my body right? I told her - I can see myself twisting! My husband can see it! She blew that off - I told her - no, we have been together since I was sixteen, he KNOWS my body better that I! If he says it looks like it then it must be! Ok, sorry to go off on a rant - it just really blows my mind to have someone tell me "you have always been like this you just never noticed" Ok. weird. LOL

[denverluv]

Oh no -I was not upset with her - just kind of funny - see my mom had me when she was 41- she is now 70 - so it was kind of funny she "forgot". I think the doctors did tell her was not anything to worry about - and at the time, my scoliosis came on so quick and severe that that was probably at the forefront of her mind.
I have no Idea what EDS is - but now I am going to go check LOL!

[shanmomof3]

I was wondering about EDS too. Oh and dont be too upset with your mom about not telling you she was probably told "it's no big deal" since your other drs were not chiari specialists. JMO -- Shannon

[selmaS]

hmmmmmm do u know were u checked for Ehlers-Danlos?...since u developed a sensitivity I wondered about it.......

Glad we were of some help...keep us posted : )

"selma"

[denverluv]

LOL - I do not know if my cyst was a syrinx - that all came about when I was about 9 years old - and yea I did have a tethered cord - all that was fixed between 9-11. I had rods put in but had them taken out when u was 15 because I developed a "sensitivity" to them. I guess they told my mom I had the CM back then but I was not showing any symptoms so my dear mother never told me about it. (I guess the headaches meant nothing to her LOL) It wasn't untill I came to her to tell her of the DX she said - "oh that's right" well uh ok thanks mom. But see what is so funny to me (weird) is that they did do a spinal tap last year and said all was well. They did all that because I told them about the numbness, etc. and that it felt like I was twisting. The doctor said - stay as fit and trim as possible, I see nothing wrong with you. Ok well kinda hard to exercise when your head is about to blow LOL!  So I don't know. That's why I am trying to get in to see Dr. Oro. You guys are awesome - thank you!

[selmaS]

Hi...u sound like u have many of the typical Chiari symptoms...but u may have some related conditions as Shannon asked was ur cyst a syrinx?

I also wonder since u had the shunt and u have scoliosis if u may also have tethered cord.....

Most here can understand what u  r talking about.....it is easy  to get depressed and in most cases it is bcuz no one understands us....but u found us, and everyone here understands : )

"selma"

[shanmomof3]

oh forgot to ask ... The cyst that the shunt is for have they ever called it a syrinx? Just wondering ...

[shanmomof3]

Hi and welcome to the group! I have not seen Dr. Oro but i did send my records to him and his assistant Kelly told me it takes 3 to 6 weeks for him to review everything but maybe he will get yours sooner since your pcp sent it! I do know that kelly answers her email faster than she returns a phone call lol Hope this helps! -- Shannon

[denverluv]

Thanks for responding! Mostly the headaches - see it all came on kind of slow - and I kept telling them look my head hurts everyday - I understand people get migraines but this is ridiculous. I told them my eyes get blurry, I get numbness in my fingers, my legs get this weird feeling like they are hollow but heavy, I am always tired - I mean worn out. I am a stay at home mom and my kids go to school - I told them I have no reason to be so tired. last year they did give me a (oh and that too - my forgetfulness) i can't think of what it is called - kind of a spainal tap? Because I have scoliosis - they wanted to see if that was ok and I have a shunt in my back to drain a cyst on my spinal cord - but apparently that was ok. Anyway, I kept going back telling them me head hurts, sometimes I cannot understand what people are saying to me, soemtimes I can't find the right words - just differnet things. They said - take anti-depessants. I told them no, I am not depressed. Finally, one day I get this piercing pain in the back of my head, I freak out, get home, go to the restroom, then (sorry this is personal and gross) then have incontinence (right after using the restroom!)  - my head was pounding after that, my one eye was drooping, one pupil was larger than the other - basically feeling like you know what. Then the do the MRI - diagnose me - here I am. I also have been getting this weird pain in my chest with pressure, they have done a EKG (normal) but last night it happened again, I was sweating all night, could not sleep, woke up feeling worse than ever - hurting inside my fingers and legs and feet, numb in my fingers, and my head and neck hurt like no other. It seems because I will not take narcotics I am doomed LOL. OH - I have Medicaid (in the process of getting it back because in the midst of all this I forgot to do my re-certification - boo me). Anyway, sorry for the long post - also wondering is anone else experiences this? And I just want to feel better - it seems my PCP might not know about CM too much - righ after she gave me the diagnosis she told me I was so tired because I was depressed!

[selmaS]

Hi and welcome to the Chiari forum.

May I ask, does ur insurance require a referral?...if not, u can just forward ur MIR films(disks) to him for review......

I met Dr Oro at a conference and he is one of the kindest men I have ever met....and I wish I was closer to go to him, but I am just as happy with my NS that I went to....

We do have several members that have been to Dr O.....I am sure someone will post their experience with him.

U r so lucky to have a true Chiari specialist close to u......many of us have to travel quite a bit to get to one.

Can u tell us a bit more about the symptoms u r experiencing?

"selma"