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  #141  
Old 05-20-2015, 01:07 PM
bwink23 bwink23 is offline
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Originally Posted by Cynlite View Post
Thank you Cheryl. I appreciate your prayers and kind words. I know that time will heal this loss...it's just really difficult still. I will always feel her with me in my heart and be grateful for my amazing Mom.
Cynlite,

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.
__________________
2013 - MRI and CT scan....DDD L4-S1
left side (where my pain is) interarticularis pars fracture/defect with Spondylolithesis L5 over S1 with 2MM anterior displacement

Feb. 2014 - Hybrid lumbar fusion(l5/S1), ADR(L4/L5)...2-level cervical ADR (C5/C6, C6/C7). Dr. Pablo Clavel of Quiron Hospital in Barcelona, Spain. All M6 implants (PEEK cage and plate from Medtronic at fusion level in lumbar.) SAME DAY OPERATION for both areas of the spine.
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  #142  
Old 05-20-2015, 01:51 PM
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Cynlite Cynlite is offline
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Quote:
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!
__________________
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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  #143  
Old 05-20-2015, 02:18 PM
bwink23 bwink23 is offline
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Join Date: Nov 2013
Posts: 263
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Originally Posted by Cynlite View Post
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!

That's a good choice waiting for Dr. Zeeger's opinion. I would throw any surgeon's opinion out if they don't do any ADR surgeries. They simply don't have the skills, knowledge or understanding. Not to mention the philosophies are different. They will do what they have always done, and here in the U.S, that is fusions. We are on the brink of breaking the "motion preservation" technology barrier here in the States, but it still has a long way to go.

I too reached out to Texas Back Institute, but their coordinator wanted to know if i had "out of network" coverage. Made me think they ONLY work out-of-network, at least their top guys anyway. Which of course would make any procedure that much more expensive. I need my insurance from work back, it was kick *** compared to the crap bucket plan i have now.
__________________
2013 - MRI and CT scan....DDD L4-S1
left side (where my pain is) interarticularis pars fracture/defect with Spondylolithesis L5 over S1 with 2MM anterior displacement

Feb. 2014 - Hybrid lumbar fusion(l5/S1), ADR(L4/L5)...2-level cervical ADR (C5/C6, C6/C7). Dr. Pablo Clavel of Quiron Hospital in Barcelona, Spain. All M6 implants (PEEK cage and plate from Medtronic at fusion level in lumbar.) SAME DAY OPERATION for both areas of the spine.
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  #144  
Old 05-20-2015, 03:13 PM
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Cynlite Cynlite is offline
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Bwink, I don't have out of network coverage either since I'm on Medicare Disability BUT, I did talk to my insurance company about going out of network. They told me that they might make an exception but, I have to go through the process to get it. Dr. Pettine takes my Cigna HMO in Colorado. My primary care has started the process so, I'm waiting to see if Cigna will let me go out of state to see this particular provider. I'm keeping my fingers crossed. The point to the insurance company is that the local surgeons will either not help me or not see me because of my prior surgeries. I've already wasted five months trying to get help locally with no solutions. The surgeon who said he would fuse my neck also said I should think about doing nothing and living with the pain. Hopefully, I'll get the approval to go to Colorado.
__________________
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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  #145  
Old 05-20-2015, 07:20 PM
NJ Gene NJ Gene is offline
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Join Date: Feb 2013
Posts: 376
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Quote:
Originally Posted by bwink23 View Post
I too reached out to Texas Back Institute, but their coordinator wanted to know if i had "out of network" coverage. Made me think they ONLY work out-of-network, at least their top guys anyway. Which of course would make any procedure that much more expensive. I need my insurance from work back, it was kick *** compared to the crap bucket plan i have now.
You are correct, the three top guys (Guyer, Zigler, Blumenthal) only take out-of-network insurance. The hospital is in-network. In some rare cases, I guess insurance will cover hospitalization costs but not the surgeon. That certainly wasn't the case for me. Since my surgeon was not in-network, nothing else was covered. I'm still glad I used Dr. Blumenthal. I'm feeling great and it still ended up costing less than going to Europe.

Gene
__________________
Car Accident 2002 - Small Herniated Disc C3/C4
1998 Larger Herniation and Cervical Fusion C3/C4
2005 Herniation C4/C5 - 40 epidural steroid injections from Oct 2005, - Oct, 2007
2008 - Foraminotomy at C6/C7 on left side
Feb, 2010 - Cervical Fusion C4/C5
Dec, 2010 - Lumbar Fusion L3/L5
2013 - Bulge on C5/C6; herniation C6/C7 right side
Mar 26, 2013 - Foraminotomy at C6/C7 on right side
May 5, 2015 - ADR with Dr Blumenthal of TBI for C5/C6 using Mobi-C
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  #146  
Old 05-20-2015, 09:53 PM
bwink23 bwink23 is offline
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Join Date: Nov 2013
Posts: 263
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Quote:
Originally Posted by NJ Gene View Post
You are correct, the three top guys (Guyer, Zigler, Blumenthal) only take out-of-network insurance. The hospital is in-network. In some rare cases, I guess insurance will cover hospitalization costs but not the surgeon. That certainly wasn't the case for me. Since my surgeon was not in-network, nothing else was covered. I'm still glad I used Dr. Blumenthal. I'm feeling great and it still ended up costing less than going to Europe.

Gene
How is that Mobi-C working out for you? Notice any unusual noises when rotating? One lady on here said she could sometimes hear what appeared to be a "squeaking" sound.
__________________
2013 - MRI and CT scan....DDD L4-S1
left side (where my pain is) interarticularis pars fracture/defect with Spondylolithesis L5 over S1 with 2MM anterior displacement

Feb. 2014 - Hybrid lumbar fusion(l5/S1), ADR(L4/L5)...2-level cervical ADR (C5/C6, C6/C7). Dr. Pablo Clavel of Quiron Hospital in Barcelona, Spain. All M6 implants (PEEK cage and plate from Medtronic at fusion level in lumbar.) SAME DAY OPERATION for both areas of the spine.
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  #147  
Old 05-20-2015, 10:29 PM
NJ Gene NJ Gene is offline
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Join Date: Feb 2013
Posts: 376
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bwink,

I don't notice any sounds yet. We'll see what happens as I continue PT.

Gene
__________________
Car Accident 2002 - Small Herniated Disc C3/C4
1998 Larger Herniation and Cervical Fusion C3/C4
2005 Herniation C4/C5 - 40 epidural steroid injections from Oct 2005, - Oct, 2007
2008 - Foraminotomy at C6/C7 on left side
Feb, 2010 - Cervical Fusion C4/C5
Dec, 2010 - Lumbar Fusion L3/L5
2013 - Bulge on C5/C6; herniation C6/C7 right side
Mar 26, 2013 - Foraminotomy at C6/C7 on right side
May 5, 2015 - ADR with Dr Blumenthal of TBI for C5/C6 using Mobi-C
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  #148  
Old 05-21-2015, 09:32 AM
Cheryl0331 Cheryl0331 is offline
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Join Date: Dec 2010
Posts: 890
Default and out of network here

a two level adr would cost $70,000 in the US out of pocket and over in Europe it's $32,000 - $35,000 depending from what I was quoted. I got that $70,000 from a story I read about on Dr. Light in California. This lady's insurance wouldn't cover her, so that what she paid.
Meanwhile, it's finding any post op care here that is a major concern to be sure. I can't afford to fly to Spain off and on.
__________________
54 yr old female 5'7" 147 lbs. non-smoker conservative treatments failed
2007 fusion @ C4-6 peek cages, failed due to long term use of cox-2 inhibitor
2008 revised C4-6 donor bone, plate & screws
2009 fusion with Roi-C @ C3-4
2015 MRI & CT mjr ddd @ C6-7, segmental kyphosis at C7-T1, 2-level M6-C prosthesis by Dr. Clavel Barcelona Spain
2019 H.O. formed behind M6-C @ C6-7 left nerve rt & in spinal canal.
2020 Revision C6-7 to a CP-ESP prosthesis by Dr. Schmitz Dusseldorf Germany
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  #149  
Old 05-21-2015, 09:33 AM
Cheryl0331 Cheryl0331 is offline
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Join Date: Dec 2010
Posts: 890
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and let's not forget that's not with an M6, it's only Mobi, Pro-disc, or other that is approved here.
__________________
54 yr old female 5'7" 147 lbs. non-smoker conservative treatments failed
2007 fusion @ C4-6 peek cages, failed due to long term use of cox-2 inhibitor
2008 revised C4-6 donor bone, plate & screws
2009 fusion with Roi-C @ C3-4
2015 MRI & CT mjr ddd @ C6-7, segmental kyphosis at C7-T1, 2-level M6-C prosthesis by Dr. Clavel Barcelona Spain
2019 H.O. formed behind M6-C @ C6-7 left nerve rt & in spinal canal.
2020 Revision C6-7 to a CP-ESP prosthesis by Dr. Schmitz Dusseldorf Germany
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  #150  
Old 05-21-2015, 11:04 AM
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Cynlite Cynlite is offline
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Join Date: Mar 2015
Posts: 666
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I wrote about Susan who was a patient of Dr. Light in San Francisco. He is described as a surgeon of last resort because he goes in and fixes failed surgeries. (Susan can be found on Facebook. She has a page called "Back to Pain Free Life.") In Susan's case, he had to remove a fusion that didn't fuse and then put in two Mobi-C discs. I don't remember the cost exactly but, it was around $70 K. Of course, it was in San Francisco (Dec. 2014) which is a very expensive city anyway.

When I took a poll of costs for a two level cervical disc replacement in the U.S., the cost out of pocket was $35 - $48 thousand. Colorado Babe's surgery was only $26 thousand for a 2 level plus a lumbar fusion but, her insurance negotiated that rate and paid it. I was surprised to find that the costs in Europe have come up and the costs in the U.S. have come down so, in today's market they are closer in price than say 5 years ago. Unfortunately, in the U.S., the cost is all over the map because hospitals here charge for surgeons out of network popping in at the last minute without the knowledge of a patient and other hidden costs. If I paid out of pocket in the U.S., I would make sure I had something in writing that itemized my cost and didn't allow for surprise charges.

I still lean towards using one of the top three surgeons in Europe but, there are a couple here I have considered as well and have written about already.
__________________
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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