I cant find the place to post my surgery date. I met with my 2nd Opinion doctor yesterday, and THANK GOD I did, He is amazing, and really knows Chiari inside and out. We were clearly impressed, and scheduled the surgery for May 9th. in Ft. Smith, Arkansas.
We came from Memphis, TN, where the NS had said he didn't want to do a CINE study because he would know what he needed to know once he got in there***(made me scared). I am not a car, you can't just pop the hood and have a look and then go sort out the right tools.
So we cross-referenced list of specialists, and found Dr. Anthony Capocelli who trained at the Chiari Institute in NY and he is practicing in Arkansas of all places. He ordered a CINE flow study, cervical, thoracic, and lumbar MRIs, and neck and back x-rays. I am really fortunate that I have no syrinx or tether.
But the urgency for the surgery is that there is no CSF moving to the back of my head at all, and a small amount getting to the front, just enough to keep me from being paralyzed. My symptoms have progressed exponentially over the past two months, and he said that we need to decompress before I get to the place of irreversable damage. I currently have a small throat infection, Strep, and need to get past it before surgery.
It makes a difference. Selma and Pam, you were right! The specialist matters! He knew every technique and explained why he likes this or that and what studies have been done, and what is all means for me. No doctor has ever been so thorough with me. I will update as I know more. Thanks to this community for helping me find the right direction to look. I feel really blessed.
This is wonderful news! You are very luck to find such a skilled Chiari doctor in your area. Thank god he did the additional testing to check you CSF flow! I'm very happy for you and I will be praying for you on May 9th.
I am scheduled for my surgery at The Chiari Institute May 3rd so our surgery dates are about a week apart. Looks like we will be recovering together. :)
Thank you so much. I will lift you up in prayer for yours on May 3rd as well.
I look forward to catching up with you as we recover together, Krista. Let me know if you have any specific concerns I can pray about too. We are blessed to be getting good care. I know it's a journey, but thank God we live in an age where they can know what to do for it.
Thank you for sharing.
I was reading your post. I have the same problem. 2 years ago, I found out that I have Chiari. It has been over the last4 months that I have been having alot of the symptoms from it. Went to see 2 nero dr's. They say what I have is not from the Chiari. I live in NY and have been looking for a specilist. Than I saw your post could you please tell me more
I am so happy for you. It never has been a question whether any surgeon can do this surgery. But if they get in and find a problem do they have the experience to deal with it? In my case my skull was like a shelf instead of a gentle slope and it had to be reshapen. In the hands of an inexperienced surgeon that would have meant more surgery. You know your gut when it is right. I will be praying for you.
I hope you have better luck with doctors. The docotr I found trained at the Chiari Institure of New York, I think in Long Island. Their web address is chiariinstitute.com and all of my research showed that they are amongst the very best in Chiari, because that is clearly their focus. My problem there was that my insurance couldn't cover them. If I was in the area, I am sure I would have found my way there. I hope you have a better experiance this time. Suffering without answers is exhausting.
Dr. Bolognese from the Chiari Institute does a lot of the informational videos on Chiari which you can find online and on youtube. Have a look at the website. I will be saying a prayer for you and for good results.
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