Chiari Care Center/Dr. Oro in Colorado??

[fibrotj]

It's me again...LOL!  I'm still researching CM specialists...& I'm not convinced that the ones here in Oklahoma are necessarily CM specialists!  Has anyone heard or know anything about the Chiari Care Center in Aurora, Colorado...particularly Dr. Oro?  Thanks for any replies!  ;)
~tj

[selmaS]

  Hi and welcome to the Chiari forum.

Thank u so much for sharing ur positive chiari surgery experience.....Dr Oro is one of the best in the field for chiari and chiari related conditions....we have a poem by him at the top of the forum.

  I hope u continue to have a smooth recovery : )

    "selma"

[lorigon3]

I live in Michigan and have CM1 and Dr.Oro did my Posterior Fossa Decompression on 8/16/11. He has given me my life back! He is a gift from God! I have been symptomatic for over 10 years. I had a headache for that entire time. Since my surgery I have not had any headaches, I am stronger and steadier on my feet, I have gained reflexes back in both legs and one arm, my head doesn't feel like it is going to explode from a simple cough and am off some of my meds. I would have this surgery 10 times to get here. The care that I received was, well, I just don't have the words to explain. Dr. Oro and his staff and the Medical Center of Aurora are the best in the world. I look forward to a much happier future with my children. I highly recommend him. He gives people like us hope !   Good luck and God Bless

[castleton]

Mazie, Let me emphasize that the statistics I gave above are all about the shunt surgery.  Chiari surgery has very different stats.  I'm not up on those numbers since that is not my issue.  Chiari surgery avoids the shunt surgery so it is much safer and more effective.  Since they don't cut into the spinal cord for chiari surgery, the prognosis is much better and there are far fewer risks. I'm sure there are problems like with any surgery, though.  Be sure to find a NS with Chiari experience. Don't be shy about asking how many surgeries he's done that would be like yours.  Compare the NS's experience.  Google them.  See what they have published, shat their patients say.  Get a feel for the support staff.  Go with your gut.

I posted my MRI on my profile if you want to take a look.  My symptoms are not too bad and except for the back pain, I've only had them a couple of months.  Prior to December, my only symptom was pain with impact exercise (running, jumping) or doing something like horse back riding or being in a motorboat.  Then I started to have pain all the time so I went to the doctor who ordered an MRI.

I was unaware of syringomyelia until I learned about it in February after seeing my MRI and told I had a syrinx.  I've been doing  a lot of research since then.  

Good luck to you.  It's a difficult decision  I also feel stuck between a rock and a hard place. I could make things worse if I do the surgery.  I guess that is why my NS's have encouraged me to wait.

[Mazie1209]

Castle, THanks so much for your quick reply!  Yes I do have Chiari 1, its 10 or 12mm (depending on who reads the mri!) My syrinx like yours is not very long (c6-t2) but is quite large in the NS's opinion and has caused cord expansion. (my profile pic is of my last mri in nov showing the chiari and syrinx) But I have much less in way of symptoms than you do, so really surgery isnt for pain relief for me really...its to prevent the growth and more damage from the syrinx.
You answer did help, I appreciate any advice!!
Mazie:)

[castleton]

Yes, Mazie, I'm symptomatic.  Plus my syrinx is idiopathic, meaning they can find no reason for it.  That means for me the only surgical option is a shunt.  They ahve high failure rates. I've seen 3 NS and they all tell me it's very large, not so long, but very wide.  It's 11 mm wide and completely fills the spinal column from C7-T3.  I'm hyper reflexive in my legs and have constant pain in my back exactly where the syrinx is.  Coughing, sneezing, lifting, laughing, twisting, impact exercise all make it worse.  I also have some weird feelings in my right hand.  Just this week I've noticed some twitching in my legs when I'm very still, like when I'm in bed.

I'm also torn about the surgery.  All 3 NS told me to wait because the surgery is so risky.  They kept emphasizing the risk of quadriplegia (1%). They said pain is not a reason to have surgery because only 50% of patients have their pain improve.  A large number of patients end up with new symptoms they didn't have before, such as numbness, more pain, even paralysis.  One NS had done a 12 year study of syrinx patients and shared the numbers with me.  (Falci at Craig Hosptial in Colorado).  

I'm also afraid that by waiting I will make things worse or give up my window of opportunity.  The research says that the longer you have symptoms, the less likely they will improve with surgery.  Still, my NS's said the same thing:  When you start losing FUNCTION is when you want to consider the surgery not when you have increase in PAIN.

Not what I wanted to hear, really, but I had great confidence in 2 of the NS's I saw: Falci and Oro.

For now I'm waiting and seeing.

If your syrinx has a known cause, your options would be quite different, though.  If they can take out the cause or fix the Chiari, they don't have to pierce the spinal cord like in my case.  Much better odds.I would do the surgery in that case, I think.

Hope that helps. Write back and tell me more.

[Mazie1209]

Sorry to jump in, but I had a question for Castleton.  Are you symptomatic from your syrinx? Like Hyper Reflexic or anything? Is it large? Im just curious bcause I also have a syrinx, but most of the NS's I have seen say I should have the surgery, and shouldnt wait.  So I have been trying to get info on others with syrinx that are electing not to have surgery..Did he say why he reccommended waiting?  Thanks for any info..Im so torn whether to have the surgery, when I feel good! But hate to do damage later because I waited.
Mazie

[fibrotj]

Thanks Castleton!  I'm considering Dr. Michael Rosner, from NC as well.  I was raised in East TN & still have tons of family there...including my brother.  However, I now live in Oklahoma again (where I was born & where all my Mom's family lives).  I moved back here right after she died...2 weeks after my 18th B-day.  My Dad (step-dad) didn't seem to want anything to do with me anymore, after she died (still doesn't).  :(  
Anyways...Colorado would be so much closer for me.  

I've learned so much from this board already.  You guys know soooo much more than all the Dr.'s put together, that I've seen thusfar!  Of course...I'm not officially Dx...however, the more I read...the more "familiar" it all sounds!  I was just reading some Chiari personal stories on another website.  All I could say when reading was..."WOW!"  Some of them really hit home with me!  It amazes me as to how little the medical field knows about this condition...which is why most of us are continuously Misdiagnosed!  I'm sick that I can't get to my previous MRI scans right now (in storage) because I'm wanting to look at them again...after researching Chiari.  But then again...I probably wouldn't know what I was looking at anyways...besides a "significant" herniation.  Thanks again!  {{hugs}}
~tj

[castleton]

Let me add that I saw him only 2 weeks ago.  They have a thorough exam and his RN is very thoughtful.  They completely believe you about your symptoms which is very reassuring.  I spent a lot of time with him looking over my MRI and he explained everything.  He answered all my questions.  For me, the recommendation is to wait for now, so he doesn't seem like he's the sort to push for unnecessary surgery.  Again, good luck.

[castleton]

Yes, I've seen Dr. Oro for my syrinx and he is thoughtful, cautious and very up-to-date on the latest research.  His nurse, Dianne, is really nice. I think he is an excellent choice, though 2 opinions is better than 1. Good luck to you.