Just got back from my visit with Dr. Oro. We were so disappointed. After 4 months waiting for an appointment and traveling many miles, we were seen all of 30 minutes over 4 days and told no surgery after two other neurosurgeons said it was needed. So, I don't know if I agree with your opinion and poem wrote by Dr. Oro. Thanks.
I'm so sorry that you went all that way for such disappointment! I never even considered traveling and I found a great NS in my own area and didn't even seek a second opinion (I got the one I expected to get -- surgery). Sometimes what you need is in your own backyard. Maybe revisit one of the NSs you saw before and discuss it again. You must feel so defeated, I can imagine. Did he have a reason why no surgery? I don't think you were the only one disappointed by him, I remember another member commenting on a visit that was similar to yours. Maybe that member will see this and add to the thread.
Again, i am so sorry! If you feel that surgery is what you need, then you advocate for yourself and go get it done :) As long as you trust the surgeon, I believe that a persons gut doesn't steer them wrong! Good luck to you and again so sorry for he bad experience!
Hi ...sorry u were disappointed at Dr Oro's, but besides not needing surgery what else did he say....
There r many Chairi specialists that may choose to wait and watch someone with chiari...not remembering ur DD's issues I can not say what her symptoms r and if I disagree with Dr Oro....u live with her and know her quality of life, Dr Oro being one of the top in this field...I would want to know y he said no to surgery and what he felt was going on.
There r many NS that will offer surgery as this is how they get paid, but doing surgery....however, I am one that would want someone that does this on a reg basis.
I also feel u r the one that has to be comfortable with the dr u choose....do research and find one u like...we all can and will not like the same drs......
I wish u and ur DD well in finding that dr that is right for u both.
Mayo is not tops in this field and I am not aware of chiari drs there...they do have a great reputation in other fields tho.
My NS actually did his residency at the Mayo Clinic in Arizona and did dozens of chiari decompressions there -- majority of them on pediatric patients. That may be a place worth looking into depending on where you live. Best of luck!
My heart goes out to you. So much effort and expense. Were you having tests and exams all 4 days and then only a 30 min. consultation?
Please, if you would be so kind; fill us in. I know alot of us would appreciate it.
Blessings to you and your family.
We sent an MRI disk to a well known Chiari specialist, back when we were trying to find help for Rachael. His nurse took forever to get back with me. Once she finally did, it was a brisk, "No Chiari" email that crashed my hopes of finding answers.
Thankfully, we found another Chiari expert in a closer location that was able to help us.
So, my point is...these doctors are humans...they are NOT gods. They can make mistakes, and you have to search to find the one that can and will help you.
Please don't give up! Hang in there, and don't quit your quest for answers and help.
One thing we have learned while on this chiari road is that one person's hero may not be our hero. We have had so many let down's it's hard to get excited about seeing a new doctor. We saw Dr. B in NY on 6/22 at TCI and it involved a great deal of travel and we waited for four hours to see him until his entire office staff left us in the office alone and he came over for about 30 minutes between surgeries and squeezed in a quick visit. He could have told us over the phone what he did in person. He sent us home for about 7 tests which we did within 4 weeks and they have been on his desk for about a month now and he STILL has not contacted us with his opinion regarding surgery or not. His staff is remiss in getting back with us and quite rude. I finally started emailing him directly and he did actually email me back within a few hours both times. What they do not understand is although time moves very fast for them, on the patients end times moves very very slowly. And if we have gone to the trouble of going all the way to NY we must be suffering and really in need of help. Especially since the Mayfield Clinic, Cleveland Clinic and Goodman Campbell Brain and Spine in Indy all let us down profusely. My husband was decompressed in FL 10/23/09 and his symptoms returned within six months. The Mayfield and CC all said it's not chiari. Movement specialist in CC said it is not anything like MS or Palsy and it has to be related to the Chiari but NS refused to see my husband again. He said to go to primary, which is a joke because they know very little about chiari themselves. At least Doc in Indy said to go to TCI. We just wish they considered us important because I consider my husband and the fact that we wish to regain our lives back to the best of our ability. We are going to see Dr. Oro the end of this month. We can only hope he can help and will do so in a timely manner. But, it's hard to get up hope, after all the disappointments.
I am so sorry ur DH is still dealing with these issues post op...and some just do, and sometimes there is no reason for it, other times it can .
As for Dr B not getting back to u for a month, that is a typical time frame when u factor in what all he does and that all patients go b4 a review of all Drs at TCI to decide the best course of action...it is not just Dr B's decision.
Yes, for the patient, time is ever slow especially when in pain, and we have to understand that even tho the Dr may be taking his time getting back, he is most likely doing a through review of the case.
And u r right again, I may love my Dr and u may not, this is y I always say research all the drs u consider seeing, and choose the one that is best for u....u have to feel comfortable with him professionally and personally.
I was very impressed by the mayo clinic in Arizona. They have great NS there that are very knowledgable about the topic. If my insurance was contracted with them I would not be nervous about following through with their suggestions... just my opinion.
That is interesting. I'm from Portland as well, and we dont have any Chiari specialist here. Well, there is one in medford, but that is hours away, and you said you didn't travel. Who do you speak of then? Curious. I know this is an old thread, hoping someone knows.
I understand your frustration....I had to wait a long time to get through the TCI review board process, too; but I have to say, I'm glad I waited for them. You see, my tests and referral to a genetic specialist changed the course of action in my case. I was originally approved for PFD surgery; however, after being diagnosed with a connective tissue disorder and cervical instability, a fusion procedure was added. I had both done by Dr. B. on 6/20 at TCI. I am 7 weeks post op and doing very well. I feel my waiting allowed them to design the best course of action for me.
just wanted to say everyone is different so we will not all choose the same ns. but my ns is dr.oro and he is fantastic. he did not force me into surgery i was givin options of trying nerve blocks first, for i have occipital neuralgia from first surgery done by diff ns. it was my decision that if the nerve blocks didnt work, which they did nothing to decide if i wanted it done. my first ns only did the craniotomy and laminectomy. dr oro is going to open dura, patch it with my own tissue, put in a plate and repair my muscle damage from surgery #1. i absolutly adore him. i didnt even have to say much when i was there in april, he just knew. he is very thorough and if he feels someone is not a surgical candidate then why have surgery?! maybe the person who posted this was just unhappy that they didnt hear what they wanted to hear. but dr oro is a fantastic ns and i would reccomend anyone to check him out.
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