Going to See Dr. Oro

[rmlyonsfamily]

So things with Mike have not gotten better.  He was diagnosed with Intracranial Hypertension, but we've recently learned that he may not even have it.  He does have high pressure, but it's not significantly high (235) and they don't feel like he presents like the typical IH case.  Not sure we agree...  but regardless...  we press on.  

To catch you up - he had decompression surgery for CM 8/1/12 in North Carolina and did well afterwards for 11 months.  We have since moved to AZ.  Then, July 26th he had a headache of all headaches that landed him in the hospital on the 28th for 3 days.  After a bad experience at Barrow we ended up at Mayo and have been pleased with the NL, but the NS was a different story.  He's had a constant headache since 7/26 of 6+/10, vision is horrible, hands are burning, feels spacey, cognitively struggling with simple problem solving tasks, neck pain, etc. etc.  You all know the feelings and symptoms.  After reconvening with our PCP, they've set up a referral with Dr. Oro in Colorado who has agreed to take Mike's case.  PCP has sent everything up and we should hear from them early in the week with appointment dates.

So - I'm just wondering what everyone's experiences have been with Dr. Oro - specifically those of you who had a surgery already by someone else and are then saw him b/c of complications, etc.  Kind of nervous about it all.

[selmaS]

  Good luck - and safe travels <3

[rmlyonsfamily]

Dr. Oro's office called.  We check in Mon Nov 11th and will be there 3 days.  

[selmaS]

  Hi we do have a few members that have been to Dr O.....and I have heard nothing but good things.

Rylanesmom is a member that went there as well as Dana....she flew and I know post op, most NS's will want u to stick around for a few days to make sure there r no issues bcuz of the distance u will be from him....

I wish Mike well and so sorry to hear he continues to have these problems and pains so far post op.

[Sexybare]

Hi my name is Dana. Dr oro is my ns. I had first surgery at u of m in michigan and had complications. Dr oro did my second surgery. He is wonderful. I still have complications due to many disorders I have that r elated ti chiari. I just saw him again for more tests on sept 16. We drove there and back for my surgery because flying hurts me altogether and I was not about to deal with that on top of surgery.  Wishing u luck :)

[ninigrli]

So sorry to hear Mike is not doin well. I had the surgery last year and few months after having all kinds of strange isssue I didn't have prior to surgery. Just like you I sent my information to Dr Oro office and they would like to see me. Will be heading  there next month.

I was told it will be a 3day thing. You will do all typess of test depending on your situation and on the 3day you meet with Dr Oro. I'm sure you will hear from other who have seen him. I did hear from one peron who had her second urgery with him and I also communicated with someone  who's daughter had the surgery with him.

[rmlyonsfamily]

And if you traveled to see him how far and did you drive/fly?  We are 12 hours.  Can you fly immediately after surgery?