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.
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!
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
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!
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!
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
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.
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