Thread: Charite removal
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Old 09-01-2007, 07:57 PM
Axeman Axeman is offline
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Join Date: Sep 2007
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Hi Harrison,

I'd like to apologize in advance for this novel but here are some answers to your questions:

This has been going on for 10 years now and there is no clear diagnosis in my case. Everything started with some urinary problem and GI symptoms, then lower back pain, and the symptoms got worse and worse over time. At first because of all my symptoms I was seeing multiple doctors (urologists, GI specialists, neurologists, etc) so it was very difficult to say what was causing what. Since the GI symptoms were so bad and constant, I spend a couple years dealing with all kinds of tests including upper/lower GI tests, liver tests, sigmoidoscopy, blood work, etc and of course nothing really panned out, I went from one doctor to another and they all told me that it's all in my head/stress/IBS etc, etc. I was on every depression meds known to man, but of course I kept getting worse. Urologists couldn't find anything either after many (painful) tests.
Somehow I landed at Cedars Sinai in 2002 to see yet another urologist and GI doctors and I complained about the constant lower back pain shooting in my groins and right leg and the fact that I couldn't stand on my feet for more than 20min or this knife like pain would start in the middle of my back around the thoracic area.
I started seeing the spine doctor over there and after many tests someone finally came up with something concrete and they saw that I had a ruptured disc at L5/S1 that was leaking and could potentially irritates all the nerves in that area and cause some of my symptoms. After a lot of discussions and me doing some research, I heard bad things about spine fusions and found out they've been doing disc replacements in Europe since the 80's. Since I'm from Europe originally and have more confidence in their treatment I though this could be the solution to my problems. Dr Regan at Cedars told me that he was trained in Strasbourg and Germany on the Charite disc and was doing a clinical trial, and that I would be a perfect candidate. To make a long story short, I had the surgery in Feb 2003 which went pretty smooth. My symptoms did not improve and the same pain, urinary and GI symptoms were still present. They checked the positioning of the disc and they said its perfectly placed and basically couldn't deal with my crazy problem anymore. During a visit in France I met probably one of the best doctor in the world who's a Professor in Radiology and Neuro Surgery. He had helped one of my parents friends get her life back after a similar 10 years battle that no one could figure out. I saw him on my occasions and he told me that I made a mistake to have opted for the Charite and I should have done a fusion instead. He kept working on me during every visit I made to try to find out where the pain was coming from. Between him and another doctor in Phoenix, Arizona (Dr. Yeung) they figured out my pain is coming more from the facet joint that is pinching one of the nerves. Dr Yeung made 2 injections in that area and for the first time, some of the horrible pain in my groins and leg went away for a few days. I was ecstatic as I knew that I wasn't crazy and something was actually causing all my suffering. This is where my case is at right now, Dr. Yeung is also sick of dealing with me, because as he said "I'm too complicated of a case"..you gotta love doctors in the US! So I'm stuck and don't know what to do. He wanted to do a few more injections but I just can't afford to make $600 injections every 3 days that are just masking the pain and I need to find a permanent solution, I know someone out there can help me. I do have scoliosis, and I do have some bulging around T4 I believe, but no one has even dealt with that part yet because the main problem is at L5/S1. I've been reading some of online articles about the Charite failing and the lawsuits, so of course I'm terrified that this device could cause me to die or be paralyzed and I don't know what to do. I wish I could just have it out of me. I have to schedule another CT Scan/MRI to make sure nothing has moved or deteriorated. As of the last check-up in 2006, the disc was still fine.
Anyway this is my dilemma and I'm willing to do whatever it takes to find a doctor who's willing to listen and help me. I have had no quality of life for the past 10 years and now with the fear of potential death it's not making the depression and anxiety any easier. I'm curious to find out if anyone has had this disc taken out successfully without dying? And if the device fails, what are the surgeons doing to deal with it?
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Feb 2003: John Regan ruined my life!
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