ADRSupport Community  

Go Back   ADRSupport Community > General Discussion > New Member Introductions

New Member Introductions If you just joined, please introduce yourself here. Please add a signature describing your spinal history (use the "User CP) and ask us how we can help you get started.


Reply
 
Thread Tools
  #1  
Old 06-18-2015, 07:39 AM
Corona Gal Corona Gal is offline
Junior Member
 
Join Date: Jun 2015
Posts: 3
Default Making a final decision

I was diagnosed with cervical stenosis in 2011. Had carpel tunnel release in 2012, both wrists, relieving majority of hand and arm tingling and numbness. tried multiple therapies, anything to avoid fusion surgery, but no lasting improvements. In the last year my pain has increased and life is degrading to a point where I must take surgical action. I always told people I was waiting for disc replacement, and now my time has come. I need multiple level cervical ADR, and have just gotten a proposal from Dr. Bertagnolli in Germany. I thought this many levels were not yet approved in the U.S. and know they've had a lot more experience in Europe, and have seen two other surgeons here in CA who still insist on fusion. Also just made appt. for consultation at the Cedars Sinai Spine Inst., and will be seeking patient advice and experience here, to help with making my final decision. I have multiple problems with the area ( degeneration, kyphosis, bone spurs, arthritis ..... often referred to with different medical terms ) and the more I read it seems my pain is not typical of stenosis and pinched nerves, primarily pain is still neck and shoulders. I am sure most of you recognize the difficulty involved in making a truly informed decision. My frustration makes me almost wish I could just believe the great surgeon Gods' diagnoses and get on with this, but that just isn't who I am. I look forward to learning a lot more through you kind folks participating here. Thanks in advance, and be well.

Andrea
Reply With Quote
  #2  
Old 06-18-2015, 11:33 AM
Cynlite's Avatar
Cynlite Cynlite is offline
Senior Member
 
Join Date: Mar 2015
Posts: 666
Default

Andrea, I am so extremely busy that I can't write you a proper email. I too am in the same situation as you and going crazy trying to get my surgery scheduled. I have run into the same problems. It is hard to find qualified surgeons in the U.S. but, they are here just rare. The U.S. is about 15 years behind Europe when it comes to spinal surgery. Please read my threads! I've posted lots of information in them. I'm writing you back immediately to ask you to NOT see Dr. Bertagnoli. There have been too many terrible outcomes for his patients and I would hate for you to end up in the same situation. The stories are in the post surgery Forum along with all the other U.S. patients that have suffered after having the Prodisc C. It's about a 50/50 shot the way I see it with that disc. The Prodisc is not the best disc and if you have a problem with your surgery, Dr. Bertagnoli is known to abandon his patients. You need to consider surgeons who use the Mobi-C in the U.S. or the M6-C in Europe. I suggest that you contact Dr. Clavel in Spain and Dr. Zeegers in the Netherlands. Hopefully, others here will join in soon with their knowledge to help you! I have to run. Good luck. Cynlite
__________________
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
Reply With Quote
  #3  
Old 06-18-2015, 09:26 PM
Cheryl0331 Cheryl0331 is offline
Senior Member
 
Join Date: Dec 2010
Posts: 890
Default I have had fusion

Hi Corna Gal, My first fusion didn't fuse, revision a year later, then adjacent level issue set in and another level and a third surgery later I still found myself in pain. Just over four year after my third surgery another level was going out. Dr. Clavel has improved my quality of life. I know I am better than if I had gone with the doctors here. Let it auto fuse = disability, fuse it = disability, or use the Bryan which mills too much bone, you cant go to another disc if needed later, and it wasn't covered by my insurance either because it was adjacent to a prior fusion and it would have been $70,000 out of pocket. I got a two level ADR with the best disc M6-c for only $32,000 I did the math! Most of us here do not support fusion unless last resort or in combo with hybrid surgery, and most of us here know that the Prodisc had too many complications. The mobi-c is better than the Prodisc but it's to fluid in design. the M6-C is more constrained. I pray for God to guide your decision. For me I would go to Dr. Clavel again.
__________________
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
Reply With Quote
  #4  
Old 06-18-2015, 09:58 PM
NJ Gene NJ Gene is offline
Senior Member
 
Join Date: Feb 2013
Posts: 376
Default

Andrea, I had a great experience with the Texas Back Institute (TBI). I had ADR with the Mobi-C at C5/C6, which was below 2 levels of previous fusion. I'm six weeks post-op and feeling great!!

I think you should consider getting an opinion from them. Here is their website: Center For Disc Replacement - Texas Back Institute

I recommend that you take a trip there and get an opinion. The consultation will cost $250.00, but is well worth it. As I've told others on these boards, surgeons who don't perform ADR will not encourage it. It's my estimate that only 1% of U.S. surgeons currently do. These surgeons know how to do fusions and everything that non-ADR surgeons do as well. They will not push for ADR if they believe another procedure is appropriate.

Best of luck!!

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
Reply With Quote
  #5  
Old 06-19-2015, 10:55 AM
Corona Gal Corona Gal is offline
Junior Member
 
Join Date: Jun 2015
Posts: 3
Default what an incredible resource

just a note to thank you for your input. I think just in one day I have learned a lot, and feel better informed than during many prior days trying to make sense of all this. I bet I could buy a plane ticket and a consult in Texas for about the same as the 600$ consult at Cedars Sinai in L.A. I had already begun to feel uncomfortable with Bertignolli and the fact that making a decision to go overseas will require a real comfort level before committing. Besides, Spain sounds way better than Germany......lol. I'm not sure if that is at all a medical consideration as much as my preference for Tapas and Wine, over Bratwurst and Beer. So thanks again and I'll read more on the suggested boards.

Andrea
__________________
cervical stenosis c3/4 to C6/7. Arthritis, ossification etc. Cervical Pain neck and shoulders primarily.
Pre-Surgical Research
Overseas interest
Diagnosed with cervical stenosis in 2011. Carpel tunnel release in 2012, both wrists, relieving majority of tingling and numbness. In the last year pain has increased and life is degrading even more. I need multiple level cervical ADR. I have multiple problems with the area ( degeneration, kyphosis, bone spurs, arthritis
Reply With Quote
  #6  
Old 06-19-2015, 12:51 PM
Cynlite's Avatar
Cynlite Cynlite is offline
Senior Member
 
Join Date: Mar 2015
Posts: 666
Default

Back again. I'm fighting with my insurance company to let me go out of state. Gene gave you a good referral to the Texas Back Institute. His surgeon was Dr. Blumenthal and he has a good track record.

I am trying to get a referral to Dr. Kenneth Pettine in Colorado. Colorado Babe had surgery with him last year and also stem cell injections by him. She is doing fantastic! You can read her story here in the forums.

Rocky Mountain Associates Orthopedics | Welcome | RMA Ortho

So, where I live, there is one surgeon who did a 2 level cervical ADR last year. That's all we have got in my state and I don't know about you but, I don't want to see a surgeon who has only done one surgery at 2 levels. All the surgeons I have seen locally either recommend fusion or nothing because that's all they know! It's up to us to be our own advocates and figure out what is best. I think the list of qualified ADR surgeons in the US is about 30 surgeons! (You have a handful of them in California but, my research shows them all using the Prodisc.) I need 2 - 3 levels so that means I need the best of the best. Dr. Pettine has experience with both the Mobi-C and the M6-C (Trials only in US), so he's another option for you. I am still trying to get some questions answered that Dr. Zeegers raised in his emails to me so, I cannot schedule my surgery yet. Most likely I will go to Dr. Clavel in Spain (he's a wonderful man and surgeon so, worth talking to) but, I want to have a surgeon in the US that can follow me if I do go to Europe. I think it will help my chances of getting my insurance to cover some of my costs. They require a peer to peer to approve just about everything so, I need a surgeon in the US too! Very few surgeons in the US will see you after you have had surgery in Europe because the surgery is just out of their league. They have nothing to offer. I think it's important to plan for the worst and hope for the best after having surgery.

In my opinion, Dr. Zeegers is the best for diagnosis and either he or Dr. Clavel are the best surgeons from this forum in Europe. Dr. Zeegers raised questions that no other surgeon I have seen or spoken to has raised and they are very important questions! Now, I just have to figure out how to get my insurance company to cover the tests he has ordered. I'm praying that Dr. Pettine will take me on as a patient since I think he is the only surgeon who can help me break down these insurance road blocks.

BTW, if you go to the Mobi-C manufacturer's website, they list the surgeons that are trained with their device. However, I'm with Cheryl and am still leaning towards the M6-C because it is a constrained device. If I get to see Dr. Pettine, he is qualified to discuss the two discs and I want to hear what he has to say.

So, now you have a summary of what I've learned over the last six months ...run with it and good luck!

P.S. Please fill out your signature in your profile so everyone will know what you have had done. It will help people to give you better answers.
__________________
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
Reply With Quote
  #7  
Old 06-19-2015, 06:54 PM
Cheryl0331 Cheryl0331 is offline
Senior Member
 
Join Date: Dec 2010
Posts: 890
Default Tbi

mobi-c with two level and no facet joint issue has proven to do really well. I would look into to that for sure.
__________________
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
Reply With Quote
  #8  
Old 06-20-2015, 01:48 AM
brandis77's Avatar
brandis77 brandis77 is offline
Member
 
Join Date: Feb 2015
Posts: 56
Default Mobi-C

I am 4 months post-op from a 2-level Mobi-C ADR with Dr Peterson in Austin. He was with the 2-level clinical studies from the very beginning in the US and has done more of these surgeries than anyone in the state. LDR is prepping to market him as their #1 expert in this particular procedure. I had problems with headaches and post-op appts, but now my neck and head feel as good as new. I would highly recommend looking into whether or not your insurance would cover this out-of-state procedure.
TBI has also been involved from the beginning of the clinical trials, so that is a great recommendation too. There is never any harm in getting multiple opinions!
__________________
2012-14 Right arm/shoulder/neck pain and numbness, headaches, and nerve pain gradually becomes debilitating. Medications ineffective and PT impossible due to pain. Old MRI re-read, diagnosis of C4-6 herniations.
Jan 2015 2 epidural spinal injections ineffective.
Feb 2015 2-level ADR C4-6 with Mobi-C with DrPeterson in Austin (approved by BCBSTX)
May 2015 Microdiscectomy for herniated L4/5
Oct 2015 L4/5 ESI ineffective, microdiscectomy "redo"
Reply With Quote
  #9  
Old 06-21-2015, 11:37 PM
Donblackie Donblackie is offline
Junior Member
 
Join Date: Jun 2015
Posts: 24
Default

Quote:
Originally Posted by brandis77 View Post
I am 4 months post-op from a 2-level Mobi-C ADR with Dr Peterson in Austin. He was with the 2-level clinical studies from the very beginning in the US and has done more of these surgeries than anyone in the state. LDR is prepping to market him as their #1 expert in this particular procedure. I had problems with headaches and post-op appts, but now my neck and head feel as good as new. I would highly recommend looking into whether or not your insurance would cover this out-of-state procedure.
TBI has also been involved from the beginning of the clinical trials, so that is a great recommendation too. There is never any harm in getting multiple opinions!
Hi Brandi

I used to live down the street from Austin Brain and Spine but never knew they were so involved with the Mobi C trial. I was going to schedule a consultation with Dr Zigler but now that I have read your story I am interested in talking to Dr Peterson as well.

I noticed you state in your signature that you have BCBSTX and they approved your 2 level ADR. Did you have to fight through appeals or was it fairly simple? I am looking to have C5-C7 ADR done asap as my condition is getting worse every day.

Thanks

Don
Reply With Quote
  #10  
Old 06-22-2015, 04:46 AM
brandis77's Avatar
brandis77 brandis77 is offline
Member
 
Join Date: Feb 2015
Posts: 56
Default Bcbstx

Well howdy, neighbor! I don't know why exactly dealing with BCBSTX was such a breeze, but it really was. I had surgery less than 2 weeks after I made my decision, but the procedure was actually approved in just a few days. It was probably some combination of the thousands of dollars they had clearly spent on less invasive treatments along with the doctor's office's experience with filing claims for this particular treatment. I ended up paying my OOP maximum for the year (which is different from your deductible) which was $5500. If you are using insurance, I doubt a 2-level procedure would ever cost lest than your OOP maximum, even if you have a high deductible plan.

Another thing I really liked about Peterson was that he operates out of a private surgical hospital, called Arise (you can look them up online if you are interested). It is a full surgical center and emergency room, just smaller and friendlier. My room was like a nice hotel room, complete with a pull-out bed for my husband to sleep on. The staff were extremely personable and attentive. For my first surgery, there were just 12 other inpatients, and only 6 for my most recent surgery (unrelated to the cervical one). It was SO much better than waking up in a busy, scary hospital, and I felt like people really cared about making me feel as comfortable as possible.

If you do go in for a consult, make sure it's Peterson you see, and bring a list of questions as he can sometimes be brief. And if you're within driving distance, you might as well check out TBI too.
__________________
2012-14 Right arm/shoulder/neck pain and numbness, headaches, and nerve pain gradually becomes debilitating. Medications ineffective and PT impossible due to pain. Old MRI re-read, diagnosis of C4-6 herniations.
Jan 2015 2 epidural spinal injections ineffective.
Feb 2015 2-level ADR C4-6 with Mobi-C with DrPeterson in Austin (approved by BCBSTX)
May 2015 Microdiscectomy for herniated L4/5
Oct 2015 L4/5 ESI ineffective, microdiscectomy "redo"
Reply With Quote
Reply

Bookmarks

Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
Help making a decision vicschilling New Member Introductions 5 05-27-2010 05:50 PM
NOTHING FINAL Hilary The Big File 0 09-01-2008 06:43 PM
One Step Closer To Making A Decision Nairek The Big File 5 04-04-2006 01:16 AM
need help with decision making! The Big File 9 04-02-2006 11:44 PM


All times are GMT -4. The time now is 09:48 AM.


© Copyright 2006-2023 ADRSupport.org All rights reserved.