New to ADR - considering surgery in April

[NJ Gene]

Good evening ADR members. I wanted to introduce myself. You can see what I've been through by looking at my signature. I am currently having radiating arm pain going down my right shoulder, arm, and tingling in the fingers. I've been through enough surgeries and conservative treatment and have had enough of it. I am now planning to go to Germany to Stenum Hospital in April to have ADR at C5/C6 and C6/C7. It is my belief (as someone without medical training) that the domino effect of 2 fusions putting pressure on my adjacent healthy discs won't stop until I have ADR. It is my hope that my upcoming surgery will be my last one of the neck (short of a major accident). Doctors in the U.S. suggest another foraminotomy. I truly believe that would be a mistake in my case. This is because I already had one at C6/C7. I know if I had a second one at that level, it would eliminate me as a candidate for ADR. I'm surprised at how difficult it is to find doctors in the U.S. who perform ADR. Is it because of all of the FDA limitations on the ones they've approved? The surgeon who performed my last fusion doesn't think going to Germany to get the M6 (a disc not yet approved by the FDA) is a good idea. From what I heard from former patients at Stenum, it sounds like a great product. I think there is a political element to the FDA. I welcome any feedback that others may have.

[Lillyth]

Originally Posted by NJ Gene

Good evening ADR members. I wanted to introduce myself. You can see what I've been through by looking at my signature. I am currently having radiating arm pain going down my right shoulder, arm, and tingling in the fingers. I've been through enough surgeries and conservative treatment and have had enough of it. I am now planning to go to Germany to Stenum Hospital in April to have ADR at C5/C6 and C6/C7. It is my belief (as someone without medical training) that the domino effect of 2 fusions putting pressure on my adjacent healthy discs won't stop until I have ADR. It is my hope that my upcoming surgery will be my last one of the neck (short of a major accident). Doctors in the U.S. suggest another foraminotomy. I truly believe that would be a mistake in my case. This is because I already had one at C6/C7. I know if I had a second one at that level, it would eliminate me as a candidate for ADR. I'm surprised at how difficult it is to find doctors in the U.S. who perform ADR. Is it because of all of the FDA limitations on the ones they've approved? The surgeon who performed my last fusion doesn't think going to Germany to get the M6 (a disc not yet approved by the FDA) is a good idea. From what I heard from former patients at Stenum, it sounds like a great product. I think there is a political element to the FDA. I welcome any feedback that others may have.

Yes, yes, and yes. It is because of the FDA, it is political, and you SHOULD go overseas.

That being said, I would not touch Stenum with a ten foot pole, nor would I trust them with my worst enemy's spine. Sure, some people have had success, but I have read too many horror stories about them and Dr. Bertignoli to even THINK about considering either one.

I would consult with Dr. Dare in the UK, Dr. Clavel in Barcelona, Dr. Pimenta in Sao Paulo, and AIMIS in Cyprus. The downside with AIMIS is they do not use the M6, but it is cheaper, so if that is a factor, you may want to consider them.

Also, your belief that the fusion is a domino effect is correct. It bears up under clinical trials too. ADR has a 2% chance of that happening. Those are pretty good odds.

If you need anything, feel free to pm me.

[NJ Gene]

Lilly, thank you for our recommendations. One thing about Stenum. I am not considering the surgeon you mentioned. The one I am consider is Dr. Ritter-Lang, who is actually a partner with Dr. Clavel , who you did recommend (but happens to be in Barcelona). Does that change your thoughts on Stenum? I don't think the one you mentioned has anything to do with Dr. Ritter-Lang.

[annapurna]

Ritter-Lang is the reason many people try to avoid Stenum. Clavel is the the exception to that comment and many people are willing to excuse him for associating with Stenum because he is such a good surgeon. You've actually chosen the one surgeon that is generally considered to be the biggest risk. He can do good work but has been associated with some of the bigger screw-ups on this board.

[Lillyth]

Originally Posted by annapurna

Ritter-Lang is the reason many people try to avoid Stenum. Clavel is the the exception to that comment and many people are willing to excuse him for associating with Stenum because he is such a good surgeon. You've actually chosen the one surgeon that is generally considered to be the biggest risk. He can do good work but has been associated with some of the bigger screw-ups on this board.

That is what I was going to say. Also, there have been major problems with the actual hospital facility itself. Bad infections, strains of viruses, etc.

After I read all those stories - no thank you! I am SO not taking that chance.

I very much liked all my interactions with the docs I mentioned (though I never had a contact with Dr. Pimenta, I have never heard a bad thing about him). I would feel comfortable with any of them cutting me open, based on the interactions I had. I went with Dr. Clavel for the main reason that I need six levels done, and he seemed to have the experience that best fit my personal needs (as in, he has done cervical and lumbar at the same time before).

I actually felt BAD telling Dr. Dare and the folks over at AIMIS that I was going with Dr. Clavel because I liked them all as PEOPLE (which is not an experience I have with most docs), so I think that says a lot.

Also, it was my understanding you could not undo a fusion? So you should get a second (and third) opinion. If Dr. Clavel, Dr. Pimenta, and Dr. Dare say they can't do it, I would reckon no one can.

[TPatti]

Dr. Pimenta is part of AIMIS and had considered using the M6. Does AIMIS not support the M6? I need to update where I am at but am waiting for a few tests and to get a final recommendation from Dr. Clavel. Recently I finally found a local doctor, Dr. Cappuccino, agrees I need to go overseas. He is also part of AIMIS and our preliminary discussion is that 3 disk might not work and I might need 2 disks and 1 fusion. Dr. Cappuccino said he is not sure if he would go with M6 or Kineflex and would discuss with Dr. Pimenta, they work on clinical trials together. He also implied that he may suggest having Pimenta perform the surgery depending on the final recommendation. He said that the M6 is the best disk functionally but that because I am only 42 he was not sure if we should stay with a metal disk for life span. I worry about having 3 levels with no shock absorption. I have opinion from Dr. Dare, waiting for final from Dr. Clavel and Dr. Cappuccino and not sure if I will send info to Dr. Pimenta directly or if it will go thru Dr. Cappuccino. Does anyone know if the costs at AIMIS or comparable to Dr. Clavel? If M6 is the way to go I am not sure if Dr. Pimenta has used yet or not. Dr. Cappuccino has not. Dr. Cappuccino seemed more comfortable that if it was not him performing the surgery that it should be a someone he knows and has worked with if he was to be involved in follow up. I will update in my Intro section once I have all recommendations.

[NJ Gene]

Based on everything I've heard on Stenum, I now know why they insisted on a MRSA test before being allowed to be operated on there. I have asked the U.S. coordinator of the team, Sue, to forward my medical information to Dr. Clavel. I want a second opinion from a doctor overseas. Since he is technically a partner with Dr. Ritter-Lang, she should be able to send my info to him without difficulty. If she makes an issue of it, I will get to Dr. Clavel through another route. One of my biggest concerns is that I did have one foraminotomy at C6/C7 in 2008. My understanding is that this can be a contraindication of ADR. As much as I want ADR, I don't want it if it's going to cause permanent pain at that level. Does anyone have links to some of these other surgeons (ie - the ones in the UK, Brazil, and Cyprus)? Thank you all for your feedback and help.

[TPatti]

Mr Dare
Wessex Health Nuffield Hospital
Winchester Road
Chandlers Ford
Eastleigh
Hampshire
SO53 2DW
email Karen @:Karen.Hammond@nuffieldhealth.com

Yolanda at Dr. Clavel: yolanda@bcn-sc.com

[newleaseonlife]

Originally Posted by TPatti

Dr. Pimenta is part of AIMIS and had considered using the M6. Does AIMIS not support the M6? I need to update where I am at but am waiting for a few tests and to get a final recommendation from Dr. Clavel. Recently I finally found a local doctor, Dr. Cappuccino, agrees I need to go overseas. He is also part of AIMIS and our preliminary discussion is that 3 disk might not work and I might need 2 disks and 1 fusion. Dr. Cappuccino said he is not sure if he would go with M6 or Kineflex and would discuss with Dr. Pimenta, they work on clinical trials together. He also implied that he may suggest having Pimenta perform the surgery depending on the final recommendation. He said that the M6 is the best disk functionally but that because I am only 42 he was not sure if we should stay with a metal disk for life span. I worry about having 3 levels with no shock absorption. I have opinion from Dr. Dare, waiting for final from Dr. Clavel and Dr. Cappuccino and not sure if I will send info to Dr. Pimenta directly or if it will go thru Dr. Cappuccino. Does anyone know if the costs at AIMIS or comparable to Dr. Clavel? If M6 is the way to go I am not sure if Dr. Pimenta has used yet or not. Dr. Cappuccino has not. Dr. Cappuccino seemed more comfortable that if it was not him performing the surgery that it should be a someone he knows and has worked with if he was to be involved in follow up. I will update in my Intro section once I have all recommendations.

TPatti, I have had a surgery experience with AIMIS and it was wonderful!! Both Drs. Pimenta and Cappucino are partner surgeons, with them. I have been away from the board for a bit, but I would love to tell you about my experience. One thing I know with AIMIS is that they have the ability to work with your insurance stateside. Feel free to PM me with any questions you have. I got to know a lot of the people working at AIMIS when I had my surgery. I'd be happy to put you in touch with the patient director. Her name is Claire, and she is a lovely person to deal with.

[newleaseonlife]

Originally Posted by Lillyth

That is what I was going to say. Also, there have been major problems with the actual hospital facility itself. Bad infections, strains of viruses, etc.

After I read all those stories - no thank you! I am SO not taking that chance.

I very much liked all my interactions with the docs I mentioned (though I never had a contact with Dr. Pimenta, I have never heard a bad thing about him). I would feel comfortable with any of them cutting me open, based on the interactions I had. I went with Dr. Clavel for the main reason that I need six levels done, and he seemed to have the experience that best fit my personal needs (as in, he has done cervical and lumbar at the same time before).

I actually felt BAD telling Dr. Dare and the folks over at AIMIS that I was going with Dr. Clavel because I liked them all as PEOPLE (which is not an experience I have with most docs), so I think that says a lot.

Also, it was my understanding you could not undo a fusion? So you should get a second (and third) opinion. If Dr. Clavel, Dr. Pimenta, and Dr. Dare say they can't do it, I would reckon no one can.

NJ Gene, like the others stated, there are some true horror stories associated with Ritter-Lang and Stenum!! That being said, I whole-heartedly endorse going to Europe for a surgery. I went to Cyprus, through AIMIS and had a fantastic experience. I still get choked up about how wonderful it was, and it has been almost a year since my surgery. The nice thing about AIMIS is once you come home, you are still following up with a local surgeon to do your after care. Meals and lodging (for you and a travel companion) at a 5 star spa/hotel are also included with your surgery "package." All you have to do is get your passport out, pack your suitcase, and fly over. Once you get off the plane, you are taken care of by AIMIS. They offer a free MRI review. AIMIS Spine | American Institute of Minimally Invasive Spine Surgery

It was scary for me, because everyone thought I was crazy to leave the States for medical care, but I knew in my gut it was the right thing to do. Feel free to PM me. I'd be happy to talk with you about my experience. I'm also available for Skyping if typing bothers your hands. I had the same issues, but with my left arm. Let me know if I can be of any help.