I've made the journey from TX to CO. Tomorrow I start my 3 day visit with Dr. Oro's staff. Any advice? I'm nervous..afraid of being brushed aside yet again by another dr. Thanks for being my sounding board.
Once u get in there and actually speak to dr oro u will relax, he's wonderful and has that affect on ya. He's a sweetheart. And don't worry about being brushed aside by him, he wouldn't have had u make the trip there if he didn't see any reason. And he doesn't operate unless good reason either. He had me try meds and nerve blocks before he even considered doing my surgery. Even tho when he did open me up he said it was worse than he expected. U relax and when u meet him he wont make u nervous. Good luck, Dana
Michele he is so nice and thorough:) My visits with his team were not stressful. Day 3 is when you will find out what they think. Hang in there:) You will have time for sightseeing if you are up to it I would go down to the Garden of the Gods (colorado springs) and there is a little town not far from there in the foothills called manitou springs that has charming little shops and a restaurant called the keg is yummy. Update us after your visit.
Okay, day one completed. I saw his NP, Kimberly Sexton. Cervical Spine MRI, scoliosis survey and neuro-optho testing ordered. Completed all but the neuro-optho..I see her in the morning before my 2nd appt with the NP. The staff everywhere has been great. They actually sent me away with a CD of my MRI..which I'm using to drive myself crazy scouring the internet for comparisons. Apparently, he doesn't routinely order the cine mri anymore bc insurance companies don't like to pay for it...meaning..they won't. I am still anxious for results...of course. I just finished multiple pages of homework and am exhausted. Hopefully I'll get to do something enjoyable tomorrow after my appts. Any input on how to check for CSF blockage from a cervical spine mri? I'm already back in the hotel in PJ's..wiped out.
Thanks you guys..I need the support..:)
Many times the NS orders the MRI's to be of certain angles or slices so they can see how things r...they look at how wide the tonsils r to see if it is blocking CSF,....the CINE shows in real time if it pulsates with the BP....
But an experienced NS can tell from reg MRI pics....some like to get a more detailed look if it is possible...
AS I said each Dr is diff and one as experienced as Dr O knows what he needs testing wise.. and what he is looking at....
I saw dr oro my first day, testing second day, including cine mri and saw nutritionist and np second day and dr o again the last day for results. Keep us updated :) and try to bee bop around a lil. Its really pretty near and in the moyntains. Tho going up and down hurt my head.. where'd yas pick to stay?
We are at the Red Lion..it's nice..carpet is crazy and messes with my eyes and head..ugh. No mention of nutritionist..and apparently CINE mri's aren't done routinely anymore due to insurance issues.. Tomorrow I see eye dr, Kimberly..then am free for the rest of the day..May drive to the mountains then. Thanks for your continued support.
We flew, I came in from Austin. My mom met me here from Memphis. I'm worn out already. Hopefully we can get out this afternoon an actually enjoy this trip a little. I could sleep the whole time, but I hate for mom to be cooped up in this room with me. I'm in grad school, so have been up at 4 both mornings doing homework..I need a little fun!
Its stressfull flying and having appts. And being new to the area. In april when I first saw dr o, we sat in hotel for 4 days becuz I didn't feel well. I felt bad for my mon cuz she was bored. How'd today go?
Today was good. I saw the eye dr. There is some pressure on my optic nerve causing severe peripheral vision loss, probably from fluid she said, but she didn't rule out normotensive glaucoma (rare)..I laugh when people say, "but that's rare"..
Anyway, saw Kimberly again, went over diet, sleep, etc. I see Dr. Oro in the morning for results. I'm anxious about getting results. Will be glad when I know what he thinks.
We drove down to Colorado Springs (with my eyes still dilated in snow..horrendous!)..soon as my eyes were back to normal I was better, we shopped in Old Colorado City and in Manitou Springs..then drove back in heavy snow..I'm back in PJs in my room. Just waiting.
I had pressure as well which caused a diagnosis of pseudo tumor and we tried gluten free and diamox. Yikes snow! Isn't the Garden of the Gods beautiful? I love that little town (Manitou) did you enjoy it? Good luck today with Dr. Oro:)
Yikes! Dilated eyes and all that white! I bet that was awful! Glad you were able to get out at site see a little. Driving in the snow sounds so peaceful and claming...can you tell I havent done that in YEARS!!! Will be waiting to hear how it ends up! Good Luck!
Loved Dr. Oro. He ordered a lumbar puncture to test CSF pressure...and you all know the drill from there. My questions...if you take Diamox..how long until you know if its working or not? He hasn't prescribed yet, but will if pressure is high. I'm pleased with all he said..and glad he is ruling out things that could be a problem later. He is fabulous and I feel silly now for being so worried.
Thank you all so much. I'm on the last leg of my trip on the plane from Memphis to Austin...researching pseudotumor..of course!
Everyone is mixed with worry and anxousnous when visiting a new dr. I love him to pieces. I'm happy u like him. He's very thorough and nice. Surgery is his last option ;) remind me of your herniation and is there no csf blockage but it may be too high?
I'm not sure about the diamox question as I was in so much pain preop that I could not tell if it was doing anything and post op did not take it. I had told them that I could not tell a difference without it and they said not to take it then. PTC can cause horrible problems as well and he will be more cautious:) Heads up diamox will make all carbonated beverages taste horrible.
My herniation is 5mm. I have some swelling on my optic nerve, peripheral vision loss and flattened pitutitary glad. he wants to rule out pseudotumor bc he said if he decompresses and pseudotumor is present, the symptoms will come back...does this sound familiar to anyone.
Rylanesmom--so you tried the Diamox and it didn't help? how long did you take it before you decided it wasn't helping. Does it take awhile to become therapeutic? I'm not excited about taking it...but if my CSF level is high..then I guess I have an answer. ..
I also had empty sella and had to get cleared by endocrine Dr. He did tell me that if he did the surgery without ruling out these things then I would have less chance of success and I would think my surgery failed. My endocrine Dr did all the screening and I was clear. He said additional csf in head had just misplaced pituitary and mine was working fine. I took it for a couple months prior to surgery and it did not help me. I did not take it post op and fell my issues were not from PTC yet I am glad he was thorough and we tried all avenues. Good luck:)
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