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
  #91  
Old 06-03-2015, 01:59 PM
brandis77's Avatar
brandis77 brandis77 is offline
Member
 
Join Date: Feb 2015
Posts: 56
Default Argh!

Cynthia, firstly I am so sorry to hear about your mother. This is a hard thing to deal with it any point in life, but I am sure it's especially difficult when you're going through all of this insurance ridiculousness AND on top of all this, you are in physical pain. I wish there were something I could do for you.

I spoke with the people at LDR yesterday (the company that makes the Mobi-C) to find out more about the marketing materials they would like to use me for. It sounds like they are looking for publicity for the discs in general (to get insurance companies to cover multiple level procedures more often) and also to support Dr. Peterson as THE Mobi-C surgeon in the country. Or at least that was my understanding from our [lengthy] conversation.

Since insurance isn't working out for you, maybe going the route of the disc manufacturer could work? I know this might be a complete shot in the dark, and I don't even know if they would be able to discuss this kind of thing with you. But they are really looking for miracle stories right now, and if you threw in Dr.Peterson's name (like you had heard success stories), maybe they would be willing to do something, or help in some way? Your "story" would be much more powerful than mine, given your long history, more complicated situation, and battles with insurance. Like maybe they or Austin Brain and Spine would pay for part of the procedure and follow-up if you agreed to participate in their marketing? A bit of a slippery slope, I know, but it could be worth at least trying.

I know that you are now looking at 3 levels and not 2, surgery in Europe, just a follow-up surgeon in the US, etc.. But it is the only suggestion I can possibly think of that is completely outside of the things you have tried.

Again, I'm so sorry you are dealing with all of this right now!
__________________
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
  #92  
Old 06-03-2015, 04:16 PM
Cynlite's Avatar
Cynlite Cynlite is offline
Senior Member
 
Join Date: Mar 2015
Posts: 666
Red face Keep the suggestions coming!

Brandis, thank you so much for taking the time to share your thoughts and condolences. I will keep in mind the manufacturer and appreciate you sharing your conversation with them. I don't have it in me right now to bring in another party as I'm having a hard time juggling what I have on my plate already. I won't forget your suggestion though! It is a good one

I think every difficult challenge I have dealt with in my life has been preparing me for this extremely difficult period. I have great strength and yet feel pretty overwhelmed right now. I am searching for a grief counselor that is up for the challenge. I'm hoping to get a call back today from one that I think will be able to help me decompress some of these feelings and help me get through this period. It's a sad time.

My case is extremely complex which is one of the reasons Dr. Zeegers is taking so long to help me figure out what to do and the reason I went outside the country for help. To put it simply, there is concern about the structure of one of my discs. If it is not "bone" and solid, then a fusion or an ADR could cause further damage if the disc broke apart. It's also possible I may still have a low grade infection in my neck from my prior surgeries. I'm trying to get the tests done to determine what I'm dealing with and it's hard since I don't have a competent surgeon in the U.S. to help me navigate through the problem and get my insurance to cover the tests. Only Dr. Zeegers has brought this issue to my attention! The doctors I have seen in the U.S. take 15 minutes to look at the films and then give me an answer of live with it or they will fuse but, promise no good results. It's just really pathetic. My pain specialist seems to think that if I exercise more (keep in mind that walking causes significant pain) then that will fix everything. I stretch, do light weights and walk a little everyday but, I'm pretty deconditioned because of my limitations. I would like nothing better than to do some kick butt cardio again! I feel like I'm the only sane person in a room full of idiots sometimes.

If I have to pay out of pocket for surgery, then I'll go to Europe where they have better tools and experience to deal with my situation. This is not to say all the surgeons in Europe are better than the U.S. There are definitely some good ones here, I just can't get access to them easily without the cooperation of my insurance company. Healthcare in this country it so unpredictable....they could run up a bill over $100 K quite easily so, moving forward without the insurance company on board is a crap shoot financially speaking.

Any one of us can find a line of surgeons in the U.S. willing to operate on us, but that doesn't mean it's the right thing to do. I've read about 75% of the Post Surgery Forum and spoken to many people who have been down this road. I have a pretty good understanding of the risks I'm up against and don't want to make my life more miserable than it already is right now. Many say "Slow and steady wins the race!" It truly applies when planning spinal surgery and afterwards!
__________________
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
  #93  
Old 06-04-2015, 08:39 AM
Cheryl0331 Cheryl0331 is offline
Senior Member
 
Join Date: Dec 2010
Posts: 890
Default glad to see you are taking time to research

If you're able to weigh every option so that you can make an informed decision, that is very smart
__________________
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
  #94  
Old 07-21-2015, 10:30 PM
Sukhre Sukhre is offline
Member
 
Join Date: Jul 2015
Posts: 33
Default how do you fight their policy

From aetna web site
"Aetna considers prosthetic intervertebral discs experimental and investigational for persons who have degenerative disk disease at more than one level."

FDA has approved it. It has been found that the success rate of multi-level ADR is not much worse from single level ADR, but multi-level fusion leads to more complexity later.

Unfortunately ADR publications are limited. Only a few number of 5 year studies comparing ADR & fusion.
__________________
46 yr old male/ USA
May 2015 MRI: Cervical Stenosis at C4/5, C5/6 and C6/7
Surgeon asked to do Fusion C4-C6
Reply With Quote
  #95  
Old 07-23-2015, 09:28 AM
Cheryl0331 Cheryl0331 is offline
Senior Member
 
Join Date: Dec 2010
Posts: 890
Default exercise

exercise ?! if it were only that easy. what do they think? we have tried nothing?! I did indoor cycling and low level Pilates for several years combined with chiro, estem, ultrasound and massage; it barely kept me functional at best!
yes here in the US that surgery I had in Spain would have cost $80-100 thousand. I only paid $32 thou plus travel.
__________________
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
  #96  
Old 07-27-2015, 08:02 PM
Jerry5 Jerry5 is offline
Senior Member
 
Join Date: May 2013
Posts: 363
Default Two Level

Hate giving away the secrets, but two level is about 42K US.

This does not include travel.
__________________
Jerry, Somewhere Ohio

L2-3 herniation, two days before Thanksgiving, 2012, Discectomy/Laminectomy, 3/13 Numbness in the right leg, lateral femoral, gone, July 10, 2014 L45 M6 ADR, July 15 PLIF L5-S1, Not able to access L51 Anterior.
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
If I pay out of pocket, is the ins co responsible for anything? mmarsh Insurance Hell 19 06-17-2008 02:05 PM


All times are GMT -4. The time now is 06:21 AM.


© Copyright 2006-2017 ADRSupport.org All rights reserved.