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#1
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I just wanted to finally say hi. I managed to register without having a panic attack. I've been expecting to have back surgery. However, it ended up worse then expected after my discogram. I have 3 grade 5 tears on my L3/4, and a grade 5 tear on my L5/S1. My neurosurgeon sent me to Plano,TX to get evaluated for the Charite--perfect for that supposedly, my ins. won't approve. Now, they want to put me in a research group. If I agree, I'll either get the Charite disc or Kineflex disc and boom most of my medical bills will be picked up through the study. Call me cynical but I'm freaking out. I've been in pain for so long. And all they do now is up pain meds, up this new drug, and I'm miserable. I really hope that by coming here I can connect with people who have experienced something like me. I have a son who will be 2 in May, and another son who just turned 9. I'm tired of living on the peripherals of life b/c of my pain. But I don't want to end up getting a disc that the FDA never even approves of to begin with. I'm so frightened that I won't have all of my bases covered. All of the right questions asked, etc. If any of you have been through this,please feel free to offer you opinion. Right now, I feel like I'm drowning in mud and I can't get started. Please help me....scared to death in TX Thanks
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#2
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Hi MBeth and big Welcome. You are in the exact right place, right here. Feel confident that it will be only a matter of time before you gain the information you need to make an informed decision. Not to mention gain the help to appeal insurance co. denial. I too was drowning in mud just over a year ago. I eventually came to decisions that I thought were beyond me thanks to all the members. I suggest using the Search Function in the left column and FAQs for Kineflex as there are member�s participation that I am sure will gladly reply to your emails.
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(Bill) 14 yrs L5-S1 pain & tear Discography 2003 DDD 10 yrs. chiropractic 6-14-05 L4/5 & L5/S1 Prodisc Yale New Haven CT Dr. James Yue |
#3
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Welcome. Mbeth! Hey, there are many folks here who have had the Kineflex...I'll chime back in soon to help you out!
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"Harrison" - info (at) adrsupport.org Fell on my ***winter 2003, Canceled fusion April 6 2004 Reborn June 25th, 2004, L5-S1 ADR Charite in Boston Founder & moderator of ADRSupport - 2004 Founder Arthroplasty Patient Foundation a 501(c)(3) - 2006 Creator & producer, Why Am I Still Sick? - 2012 Donate www.arthropatient.org/about/donate |
#4
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Hi mbeth,
Hang in here, we have every disc made almost with a patient who has it inserted. Loads of help with the USA medical sytem.Out of over 700 there is someone experienced what you want to know- - - -take your time I have left you a "Welcome Message" and a link to the FAQ`s Best Alastair
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ADR Munich 26th July 2002 L5/S1. Aged 82 now Your best asset is your health My story is here http://www.adrsupport.org/alastair.html Thank goodness for Dr Zeegers I am painfree I am here to help,I live in the UK I now run the UK spine site and can be contacted at www.adrsupportuk.com/ |
#5
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I spent a few minutes sifting through some relevant topics for you. Some of these are topics by people that have had surgery. From my standpoint, many of these patients have done very well. Nichole was having a tough time post-op with some pain, I hope she's doing better.
I encourage you to read every topic carefully, feel free to email or private message these folks as well. Kineflex Cinical Study http://www.adrsupport.org/private-cgi-bin/ultimatebb.cg...;f=3;t=000762#000000 Kineflex L4/L5 Surgery http://www.adrsupport.org/private-cgi-bin/ultimatebb.cg...;f=9;t=000076#000000 Kineflex L5/S1 Surgery � Greg http://www.adrsupport.org/private-cgi-bin/ultimatebb.cg...;f=9;t=000073#000000 http://www.adrsupport.org/private-cgi-bin/ultimatebb.cg...;f=1;t=000997#000000 L5/S1 Kineflex ADR (Walker) http://www.adrsupport.org/private-cgi-bin/ultimatebb.cg...;f=9;t=000043#000000 Kineflex Lumbar Aritifical Disc Clinical Trial http://www.adrsupport.org/private-cgi-bin/ultimatebb.cg...;f=3;t=000613#000000 New Clinical Trial - Kineflex vs Charite - United States http://www.adrsupport.org/private-cgi-bin/ultimatebb.cg...;f=3;t=000629#000000 Almost 7 months post-op - Nichole http://www.adrsupport.org/private-cgi-bin/ultimatebb.cg...;t=000993;p=1#000012 BTW: What is your understanding about the exact recommendation for you -- is it 2 level ADR? What levels?
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"Harrison" - info (at) adrsupport.org Fell on my ***winter 2003, Canceled fusion April 6 2004 Reborn June 25th, 2004, L5-S1 ADR Charite in Boston Founder & moderator of ADRSupport - 2004 Founder Arthroplasty Patient Foundation a 501(c)(3) - 2006 Creator & producer, Why Am I Still Sick? - 2012 Donate www.arthropatient.org/about/donate |
#6
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Are you being told that only one or both discs need an ADR? From your description it sounds like both the L3/4 and L5/S1 are pain generators. But it's not clear.
I'm curious because the Kineflex/Charite study is only for one level. You should not be allowed into that study if you need multiple levels unless they are expanding the study. However, I just received an email from the Plano facility that there is no multi level arm of the study. So I guess my point is that you might want to get some clarification on whether you have 1 or 2 disc problems, and if you have 2 levels of problems, why are they referring you to the study? You wouldn't want to go through surgery when only half of your problems are addressed. you've probably already discussed all this with your surgeon but just in case....it's something to think about. |
#7
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Dear mbeth,
You found the right place -- no more need to panic! I'll bet almost everyone here has felt at least some of what you do right now (I did), and the people here are terrific whether you need some empathy or some technical data. So get a glass of your favorite beverage, curl up in your most comfortable position and dig into the FAQs and the search utility. After you narrow down some questions, post a new topic for each question in one of the forums so that your subject line will catch the eye of the people best suited to answer your specific concerns. In the mean time, try to relax and let go of the panic. You really have found the right site to replace it with knowledge and friendship. Welcome! -j |
#8
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There are a lot of people here who can keep you at ease and gear you into the right direction.
I wouldn't give the FDA that much credit, they do not know what they are doing half the time in my opinion.
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Charite @ L5,S1. W/Zeegers March 11, 05. Successful. |
#9
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Welcome Mbeth,
We have all experienced anxiety throughout our ADR journey. It is important that you continue to gather information and ask questions. Try not to be intimidated my medical practitioners and/or insurance companies. Many procedures not finally approved by the FDA have been and are in use in Europe with positive results. As your case progresses, visit this forum and share your thoughts, feelings, and questions. We all understand your situation and empathize with you. Smiles
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Crystal L5/SI Charite 7/18/05 Dr. Howard http://www.myspace.com/luvmysibe http://www.xanga.com/luvmysibe "A smile is contagious, be a carrier ." |
#10
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Hi Mbeth,
Welcome. Don't be scared, I think you should be really excited that the discogram was so definitive. This is the first step to getting better with ADR. Many people don't get such good results and this really creates uncertainty problems. Also, don't forget that the Activ-L study will start this year (I need to give a plug for my hardware :-). Take your time because things are changing fast. This site will keep you up to date on the status of all studies. You will know, with the help of the people on this site, when the time is right because with this site you gain knowledge that will help you make the decision. Brad
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Brad, 2-level Activ-L ADR by Dr. Bertagnoli Oct. 18th 2005. L4/L5, L5/S1. ABSOLUTE SUCCESS (so far) |
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