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  #1  
Old 09-01-2007, 12:11 PM
Axeman Axeman is offline
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Hi all,

New to the board here, I'm glad I found this forum. I received the Charite disc as part of the clinical trial in Feb 2003 at Cedars Sinai Hospital in L.A. with Dr John Regan (L5/S1). Since then not only my pain has not gone away but I'm slowly getting worse. I live with excruciating pain 24/7 and after reading that there are more and more problems with these types of devices, I'm very scared that I could die or become paralyzed. I realize now that I should have gone with a spinal fusion instead but I know it's too late. My question is: can anyone tell me if there have been cases of Charite (or other types of replacement discs) that were removed successfully? I'm looking for the best possible expert doctor in this field to get help and I'm willing to go anywhere in the world. I would really appreciate any help or if someone can point me in the right direction.

Thanks and good luck everyone.
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Old 09-01-2007, 01:03 PM
Alastair Alastair is offline
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Hi Axeman,
Yes the Alphaklinik have removed and replaced the Charitee ADR on many occassions. They are using the ActivL and ActivC at present. However do realise this is another MAJOR surgery and I would beg you to try and find a different solution.

A trip to Munich might solve your problems without this needing to be done, it might be some thing minor that can be fixed as a day patient.

Dr Zeegers is the worlds most experienced ADR surgeon.

I had my Charitee implanted in Munich 5 years ago and I have had no problems. You need to be with real world experts to have this done.

Good Luck
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/
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  #3  
Old 09-01-2007, 01:22 PM
Axeman Axeman is offline
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Hi Alastair,

Thanks a lot for the reply and for your sound advice. I just took a look at Dr Zeegers website and I will do more reading over the weekend. I'm planning on being in Europe early next year, and I will definitely make an appointment to see him. I don't necessarily want the Charite out, but it hasn't helped the nerve pain in my buttocks, leg and groins. As long as he can help me live somewhat pain-free and the Charite doesn't break, I have no problems keeping it. But I totally agree with you and I want only the top 5 world expert to work on me to resolve this issue.

Many thanks!
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Old 09-01-2007, 01:51 PM
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Harrison Harrison is offline
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Hi Axeman, sorry abour your pain...as well as the following questions:

- Can you tell us a little more about your latest imaging studies? How is the placement of the device?
- Assuming you have the radiologist's report (if you do not, it's easily obtained), what does the report say about your lumbar spine?
- What is your understanding of the pain generator(s)? What do the doctor(s) say about the cause of the pain?
- Do you have other pains other than what you described? Other symptoms?
- Do your facet joint(s) seem to be in good shape?
- Was their subsidence (sinking/sliding) of the device?
- Do you know if you have osteoporosis?
- How are the other segments of your lumbar spine? E.g., are they badly degenerated?

If the device is correctly placed, you may want to seriously consider thinking about the other ways to diagnose and treat the pain, as revision surgery is a VERY big deal! More on this soon, back to you...
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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
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  #5  
Old 09-01-2007, 08:57 PM
Axeman Axeman is offline
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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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Old 09-01-2007, 11:00 PM
LBP LBP is offline
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Axeman,

Assuming fusion would have been better...I don't understand the premise that you must get the charite out in order to get fusion. I'm not sure that you can't have a fusion with the charite in. Can't the charite device just take the place of some other fusion device (cage/ring etc) to separate the vetebrae while they fuse everything stiff around it? I thought I read in some literature that when there's a failed ADR, sometimes the ADR device stays in place and fusion is performed. While it doesn't sound like you have a failed device but rather you were not an ideal ADR candidate, maybe the same approach is appropriate.

But have you read up on the people that have not had successful ADR results because they had facet issues that were not properly dx/exhausted before trying ADR.

For example, what's the latest with djscal...didn't he discover facet issues after having ADR and not getting relief from ADR? I think you should be reading his post-surgery recovery info...it looks like he been dealing with Dr. Regan, and has since consulted with Dr. Zeegers and is considering facet joint surgery????
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Injured 9/01
Annular tears L4/5 & L5/S1
denied adr by insurance for 2 level charite as well as hybrid fusion at L5/S1 with Charite at L4/5.

New ins paid for 2 level lumbar prodisc surgery on 4/7/08 (at age 39) with Dr. Westerlund, at Core Orthop
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  #7  
Old 09-02-2007, 07:23 AM
Alastair Alastair is offline
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I think that as Dr Zeegers has done over 1500 Charitee implants (most in the world) he is the person to see. ADR is relativly new to the USA and also they have some unique diagnostic equipment at the AK.

Facet joints are an enigma at the best of times facet joint surgery is frightening to even think of
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/
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  #8  
Old 09-02-2007, 08:04 AM
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Harrison Harrison is offline
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Quote:
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.
Axeman, I suspected something else was going on, but I am sorry to hear that there may be something complicating your diagnosis -- and treatment.

Let's talk soon, call me if you are available today...
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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
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  #9  
Old 09-05-2007, 12:31 AM
Axeman Axeman is offline
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Harrison and everyone else,

Thanks very much for your replies and suggestions.
I'm in the process of setting up an appointment for a new CT scan/MRI to see how my disc is doing. Last time I checked was at the end of 2006 and everything looked fine. Once I have the new films, I'm going to make copies and send them as well as my history to a few docs you guys mentioned and pick their brain. I want to make sure I setup a time to go to Europe and see the top 2-3 experts in the world. I'm done dealing with these jokers who call themselves doctors in the US. Harrison, I have a crazy week at work, but I will try to give you a call towards the end of the week, or over the weekend if you're available.

Take care!
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  #10  
Old 09-05-2007, 05:26 AM
annapurna annapurna is offline
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The Charite will distort the MRI and CT work in the region next to the ADR. Make sure they get good flat x-rays, including flexion and extension, as they'll help if there's something obviously wrong with placement. If there's something subtle and you end up needing the fine detail of a MRI, there is a way to image the facets using MRI but it takes a radiologist willing to tweak his instrument to get it to work. There is no practical way to image the ADR itself using MRI or CT.
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Laura - L5S1 Charitee
C5/6 and 6/7 Prodisc C
Facet problems L4-S1
Knee, Shoulder, Toe, Finger, Elbow Problems

Jim - no spine problem but lots of other fun medical challenges

"There are many Annapurnas in the lives of men" Maurice Herzog
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