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Old 05-20-2015, 01:51 PM
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Cynlite Cynlite is offline
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Join Date: Mar 2015
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Your strength is being tested. I must say, you are doing a @!@@ing amazing job dealing with all of it. You are by far the most meticulous i have ever seen in your research. I mean research, of ANYTHING lol. And sorry about your mom.
Thanks Bwink! That is very sweet of you to say I handled the doctors, hospitals and healthcare challenges for both my parents and grandmother so, I have lots of experience being a patient advocate. My Mom called me a "warrior." They have all passed now so, I can direct this energy towards myself finally. They had to come first before my health...that's what love does. Anyway, it is just my way to be fully informed before I do anything. I drive doctors a bit crazy LOL.

Dr. Zeegers wrote me back today, is sorry and finally said he is working on my case. It will be 4 weeks on Friday since he has had the completed package so, people don't expect a quick turn around from him either on his diagnosis. Well, at least he is going to get it to me which is what I want! I am not a patient woman in general and particularly this last month! I know that the good surgeons are really busy and everything takes flippin' forever but, I don't have to be happy about it.

I now have four different opinions from 4 surgeons. The one in the U.S. that said I should fuse my C5/C6 I'm throwing out as a loser and his associate who said I was not an ADR candidate is getting thrown out too since he would not even see me! So, I really only have two opinions 1) Dr. Bierstedt and 2) Dr. Clavel. They each want to do something different from the other and Dr. Clavel's opinion is pretty aggressive. It's kind of freaking me out. I have a consult set up with Dr. Clavel next week and hopefully he will help me to understand and feel better about what he thinks is going on with my spine. I'm really glad that Dr. Zeegers is coming through now because I definitely need more information. I really, really wanted to book the surgery this month but, I keep telling myself that I have to continue to be patient as the answer has not revealed itself yet

What I believe now is that Europe is so far ahead of he U.S. that it is no wonder people cannot find surgeons in the U.S. to do the follow up. I think they are just out of their league. It's like comparing apples to oranges. However, having said that, I'm going to try and establish relationships with Dr. Pettine and/or Dr. Blumenthal ahead of time as I don't think I'll find someone qualified where I live. Hopefully, one of them will be my U.S. based surgeon. It's a puzzle, it's expensive and it's not simple but, it's my life so, I just have to do what I have to do to get better. Thank God for the people on this board who have spent hours talking to me on the phone and emailing me....I love you all!
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2006: epidural shots did nothing; 2 surgeons recommended 2 level fusion, I declined.
2007 - 2010 4 foraminotomy and cord decompression cervical surgeries and 2 endoscopic discectomy T7-T8 surgeries; total 6 with Dr. Jho (Pittsburgh,PA) My C6/C7 autofused around 2009.
2013 - 2015: epidurals 3 times (again did nothing) and 4 Radiofrequency ablation (or RFA) procedures.
2016 more RFAs, hit the 10 year mark of this insanity and pain, 3 level M6-C ADR with Dr. Clavel May 19, 2016
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