Wednesday, October 6, 2010

Worth the Wait?

Apparently Dr Oro is on some type of unexpected leave...I've heard that it is a result of some accident that he is recovering from, but that news is not directly from either him or his staff. As a result all of his consultations, surgeries, and follow up appointments have been cancelled and are expected to be rescheduled for 6 weeks later. His follow up appointments are being performed by his RN. How do I know all of this? Because I have been contacted or been in contact with someone in all of those stages. All are frustrated. All have their emotions running high. All have reached out to me hoping that I can offer them some solace or wisdom or something.

Three years and 4 days ago, Dr Oro performed the surgery that changed my life. When I look back at events that were "defining moments" in my life, my decision to have Dr Oro perform my decompression is near the top of my list. I'm not a doctor. I can't guarantee that anyone else will have the same outcome that I did. I can't guarantee that surgery dates won't be changed at the last minute. I can't guarantee that the hospital staff will do everything "right" post-op. I can't even guarantee that Dr Oro and his staff will provide you with the same great, compassionate care that I received. But I believe they will.

Based on my experience with Dr Oro, I believe that he is worth the wait, however long that may be. He "fixed" me and my 31mm herniation. He gave me a quality of life I didn't believe I could have. Could someone else have done the same? Maybe. Would I tell any of my family or friends to go to anyone else? Absolutely not. Is waiting or having your appointments rescheduled hard? Absolutely. But it was my experience that Dr Oro and his staff go out of their way to give you the best quality of care when it is finally your turn in the line up. The wait is long, quite simply because he's that good. (Someone really should work on cloning him!) I know that when I made the decision to let someone cut open my head and move stuff around, I wanted the very best person to do so. I have never regretted my decision to fly to Colorado and have Dr Oro perform my surgery for a second. You have to decide what works for you and your family, but if you're looking for the happy ending, here I am!


Unknown said...

I have to 100 percent whole heartedly agree with Jenn. As someone who didn't wait for Dr. Oro when having chiari surgery, he ended up being my last stop on a miserable journey, and I can say that I do regret not going to him first. I fell into the trap of numerous nuerosurgeons telling me that a decompression was a very straight forward, easy procedure, that they could do with their eyes closed. After waiting about 2 years after diagnosis, and hearing the same opinion from three different doctors, I decided to have the surgery close to home by a local surgeon with a great practice. To cut the story short, 10 months and 3 more surgeries later, I finally got myself to Colorado and had Dr Oro do things the right way. I haven't had any troubles since, and never imagined I would feel as good as I do today. I can assure all of you that Dr. Oro is worth the wait, the inconvenience (if you aren't a CO local), and worth the money spent to travel there. Is there a local Dr that may be able to do just as good in your particular situation? Maybe. But why take the chance? Going into surgery I though I was an easy case. I had a very minor chiari that I was able to live with for years with little interruption into my daily life. I so wish I went to DR. Oro the first time, and saved myself 10 months of the scariest, painful time of my life. Thank god I had my twin Jenn to get me through ;)

Lisa said...

thanks jenn for your insight in all of this. i am in the middle of a big mental game of not being ready, getting ready, being ready now waiting. it is the largest roller coaster of my 36 years. I am trying to keep my head in check and wait for a phone call that things with Dr. Oro are progressing.

david_hatton said...

love the blog, im a regular reader, it is beautifully written. hope all goes well for surgery

think you might like some of my posts and blogs, feel free to check them out.

all the way from england


Ms. Henderson said...

Hello! I was diagnosed with Chiari Malformation in 1996 when I was 15 years old and had surgery done at that time at NYU with a very good neurosurgeon. At this time I am 30 and pregnant and my question to you is whether you were advised to have a C-section or if that was a personal choice.

Anonymous said...

Good Evening! I hope all is well with your little ones.

Your MRI picture looks just like mine. I was diagnosed with Chiari and Syringomyelia 12/22/99 and had surgery 1/11/01. My herniation is 33mm and the syrinx ran all the way to at least L1.

Iam now 29 weeks pregnant (I also have a 16 year old daughter). We have chosen to do a c-section to make sure I am not putting any extra stress on my body. I spoke with the anesthesiologist today, he is opting for an epidural since I still have some of the syrinx that has never disapated.

I have been a little nervous about the whole c-section procedure, because I had my daughter naturally without any medication.

How long did it take for the c-section area to get numb enough for surgery?

How was recovery afterwards?

Thank you for this blog, it has helped me feel less aprehensive.


Anita said...

Thank you so much for sharing your story with all of us. You are an inspiration. It seems that you live in the southern california area. If so, can you share your findings about local doctors such as those chiari specialists at UCLA. My daughter lives in MT and needs surgery, it sure would be nice to take care of her here in so cal, but we're more than willing to go to CO if Dr Oro is that much better!

Anonymous said...

I live on the central coast about an hour south of Stanford University. I chose to do the surgery there with Dr. Gary Steinberg. I know that Dr. Urlich Basdor (not quite sure of the spelling) at UCLA is the doctor most people use in Southern CA. He is suppose to be the best in that area.

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Anonymous said...

There's probably thousands of others who. Are reading your blog but not posting. I just wanted to say thanks for sharing your story. It has helped me a lot bc I too have cmI. I am fighting hard with my hmo to get me to a dr like dr oro but its doubtful. I am already having these little seizures but they are negligent in getting me a new brain/head mri. My spine huts so bad on one side and vomit from pain. I have almost all the symptoms u did and my chiari was 5mm in 2000. I have no idea where it sits now bc hmo is lagging. We plan to pay cash to get new mri if they don't approve by next week. God bless you and I hope you remain sound and happy.

iheater said...

Thanking you for sharing your story with us

Roxie said...

I live in upstate NY, just below the Adirondack mountain's. I, too, had a chiari malformation in August of 1993. I had this since birth, but didn't know it until I was injured on the job and it brought on some really bad symptoms. I went from doctor to doctor for 17 months before an upper obsteminties doctor did yet another mri. He called me the very next day and said I needed to see a neurosurgeon right away. I was already a level 3! I had no choice but to have the surgery to decompress. I had a great surgeon in Syracuse, NY who had done these before. He informed then, that if I didn't have the surgery I would likely have a stroke or even be in a wheel chair the rest of my life, I was only 39 at the time. Everything is not perfect, but that God awful pain is gone. I now have fibromyalgia and R/A. So, almost 20 years later everything concerning the chiari malformation is in control. I know that there is a chance it could come back, but I will face that if and when it ever happens. My doctor told me in the beginning that the brain wanted to sit down low and could possibly drop again, I'll believe it when I see it. May I ask you why purcoset is a bad thing, I just had a bad reaction to taking it for the pain. I could go on and on, but I think you all know what I'm feeling. When I was diagnosed, I had no one to turn to for support. My own husband didn't understand, because he had never had pain or surgery before. Bless you for telling your story.

Anonymous said...

Oh daughter was diagnosed with stage 1Chiari malformation. Im scared to death. However yall stories are hopeful. Thank u all

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This is just my story of my experience with Chiari. Until I was diagnosed, I'd never heard of it, and I just want more people to be aware of it. I'm not a doctor, so don't quote me on any of this stuff - k? If you are looking for information about Chiari Malformation, a lot of the more informative posts are the older ones.