ADRSupport Community  

Go Back   ADRSupport Community > General Discussion > The Big File

The Big File All issues not easily categorized in the above forums are here. Comments on general health, diet, "getting comfortable," and more are here.


Reply
 
Thread Tools
  #1  
Old 11-17-2005, 10:45 AM
Mariaa Mariaa is offline
Banned
 
Join Date: Nov 2004
Posts: 1,121
Default

Yesterday my Nurse Case Manager who has been so encouraging about the ADR trials all along and the surgery in general called. She said she had been looking at some Charite information and did I realize what problems there can be with implanting/inserting it at certain levels so I told her I was aware of this and she mentioned some of the studies that had drastic results..
She also asked if I was aware that the cage was much safer to insert than the disc.. we discussed this topic for a while..

She then went on to talk about having been a clinical coordinator and seeing how people in Clinical studies usually receive very good care and are very enthusiastic about the surgery so the stastistics might reflect this as in the studies with overall results there was only about a 5% difference in how ADR patients did over Fusion patients...

I couldn't believe what I was hearing.. so we talked about this topic altho when someone can pull that "clinical coordinator card" it's sort of like saying "I'm the one in the know re clinical studies".. Basically I talked about going to these spinal events, meeting persons with great results that had been in clinical studies and those that had been to Europe, reading about their results over the last few years and many more with successes than failures reporting back to the forum.

I've read for years at various spinal forums with people that have had multiple level fusions and overall reports have been rather grim. Many needed repeat surgeries for adjacent levels, and most are reporting more pain and limitations..

She mentioned the new Claims Manager who carries great weight with the company now who said she would be happy to discuss this whole debacle with me re turning down the offer for ADR surgery and she even said that I've only seen two surgeons that were involved in clinical trials so why don't I see someone she can refer me to as she knows a wide network of spine doctors.

Right here I know I'm being set up for failure. I told the NCM that I know a wide range of spine doctors also having practiced in this community as an RN,NP for 25 years and that I know someone who is very involved in working with physicians performing this surgery who aren't doing clinical trials. Not to mention with my own funds, I sought opinions from a reputable Los Angeles Spine Surgeon who is performing Charite ADR and that's out of clinical trials plus an opinion twice from a world renowned European Spine Surgeon who has trained spine surgeons here to perform this surgery and he has done as many as four and five lumbar level with good/excellent results.

She asked me to come up with studies that show that ADR at multiple levels have better markedly better outcomes than fusions or have markedly good outcomes.. but preferably when compared to multi level fusion.

She also asked me to get the name of the surgeons in the LA/CA area that are doing multiple level (two and three)ADR implants since I mentioned that this is being done at The Spine Center and by Dr.Regan) that I know of..

I told her I wasn't going to any surgeon that I didn't choose to see as I'm quite sure it's my right to request the surgeon that I want to see.

She said that what I needed to do was request to see the surgeon that I wanted to do the surgery, and then transfer of care could be made to this surgeon. However, if UR denies the ADR surgery, then I'm stuck traveling miles which I really can't do at this time to see someone who's hands are basically tied in terms of treatment and can only do a multi level fusion for me.

I told her that I will stay with my current OSS because even tho WC doesn't care, I have my SSD/LTD to consider and he is the person that signs off on that so that I can have an income while I'm unable to work because of disabling back condition. Not to mention this surgeon who has seen me since 1998 and had offered a 3 level global fusion was offering me fusion at L5S1 and then Charite implants above at L4 and L3 if necessary. I informed he (several times now) that he had even stated he no longer thought a 3 level global fusion was right for me as I'd likely need the other two levels fused at a later date.

I'm going to wait awhile and see if I can collect enough information regarding ADR results over fusion, plus hope that Pro disc will one of these days make FDA approval, and try to keep my bone density up and hope I don't incur anymore facet degeneration than I may be starting to have (none has shown so far on films), and if all else fails, I will give up lifetime Future Medical Benefits which is what I believe they are trying to get me to do, and just go to Germany~

I don't know what to think right now, I'm trying hard not to kick myself for not having the surgery already when WC was willing to pay however, I didn't feel my circumstances were right overall and I was just too scared.

Now I worry as my father is 84 (lives alone in Fla. where my WC bennies weren't accepted)and it's becoming more difficult for me to travel (financially each time buying 3 planes seats to lie down) and he really doesn't want to fly unless absolutely necessary. Yesterday he told me to go to Germany and get the surgery done there (which if I win lotto I'd consider)...

I know there is a lot of information here that can be useful to me tho if anyone else has fought WC and been successful with your arguements, I'd most definately appreciate your input, guidance.

Thanks all~
Reply With Quote
  #2  
Old 11-17-2005, 09:11 PM
spotty14 spotty14 is offline
Senior Member
 
Join Date: Dec 2004
Posts: 365
Default

I'm sorry that you are having to go through all of this. I know you were counting on getting your surgery finally. Is there any way to fight them legally if you have a surgeon that will do a combination ADR/fusion or if approprite refer you to a surgeon doing a clinical trial? I wouldn't let anyone push you into getting multi level fusion if you don't want it or going to a surgeon who your not comfortable with.

You mention that they want you to give up your lifetime medical benefits, does that mean they pay you a large enough sum of money to pay for ADR in Germany and then some left for follow up care?

I hope you can get all your concerns straightened out soon.
__________________
7/05 EMG/Nerve Conduction Tests
8/04 Disqualified from ADR clinical trial due to severe osteoporosis -- getting treatment
3/04 updated MRI
11/2000 IDET L 3/4, L4/5
1/2000 Discogram
numerous epidural injections
physical therapy
Reply With Quote
  #3  
Old 11-17-2005, 10:19 PM
Mariaa Mariaa is offline
Banned
 
Join Date: Nov 2004
Posts: 1,121
Default

Spotty,
I addressed the legal issue in another post here I think. Much has changed in CA. as you know since Jan.05 and the tightening up on rules and regs. I hear that sending everything thru Utilization Review each time a request for any treatment is needed would pay for many patient's surgeries, as it's very costly for miniscule requests..

What I need now is cold hard data to go up against the powers that be in the company. I had many articles quite some time ago but they are older and I need to follow up with more recent information in terms of studies and what docs are doing where (multilevel surgeries in US).

This is just to arm myself against the new head of the Claims dept to bring a good arguement as why I should even be trying to pursue ADR and get any other consultations for it, let alone getting it. If I can at least present a good arguement with actual factual data I may just have some slip of a chance still.. at least there'd be an arguement that is presented that might give reason to override the "no" that UR will automatically give just because the devices are either not FDA approved, haven't been around long enough to study in this country, haven't had that much of a difference in success rate than fusion overall, or because the one FDA approved implant states on website only approved for one level implantation and with DDD at one level.

Time for me to get busy with researching data again..
Reply With Quote
  #4  
Old 11-17-2005, 11:34 PM
sahuaro sahuaro is offline
Senior Member
 
Join Date: May 2005
Posts: 455
Default

I believe Kim has Mark's NASS materials--perhaps you can contact her and ask her to Xerox and send any relevant abstracts since your situation sounds somewhat urgent.
__________________
2001 MVA; C5-C6 disk extruded
ongoing physical therapy, exercise and massage
ESI's, oral prednisone, trigger point injections
foraminal and central stenosis C5/C6 and c6/C7
2007 EMG/nerve conduction shows pattern of chronic radiculopathy
January, 2008: Prestige ST Artificial Disk Replacement, C5/6
Reply With Quote
  #5  
Old 11-18-2005, 02:08 AM
ans ans is offline
Senior Member
 
Join Date: Mar 2005
Posts: 1,596
Default

I agree. You could go crazy trying to decipher the ADR lit. itself, let alone ADR vs. fusion. But there must be some doc/academic like Dr. Yue who has a line on this. Good luck w/this; sorry you're getting jerked around. - Allan
__________________
Severe, extensive DDD, considered inoperable by Dr. Regan, Lauressen, & some guy at UCLA. Severe foraminal stenosis (guess they can't operate!) and some spinal cord compression that Lauryssen would fix if gets outta hand.
Reply With Quote
  #6  
Old 11-18-2005, 04:54 PM
annapurna annapurna is offline
Senior Member
 
Join Date: Dec 2004
Posts: 1,668
Default

I've still got one of Mark's 2005 NASS proceedings booklets. Who should I pass it on to with address?
__________________
Laura - L5S1 Charitee
C5/6 and 6/7 Prodisc C
Facet problems L4-S1
General joint hypermobility

Jim - C4/5, C5/6, L4/5 disk bulges and facet damage, L4/5 disk tears, currently using regenerative medicine to address

"There are many Annapurnas in the lives of men" Maurice Herzog
Reply With Quote
  #7  
Old 11-19-2005, 10:40 AM
Guest
 
Posts: n/a
Default

Mariaa,

I would also call DuPuy and talk to John. They can send you an information package with all kinds of iterature in it. John's number is 508-828-3774.

Make sure you get a surgeon who has done many Charite ADRs. You do not want a surgeon who has only done a few.

Spnal Motion is also doing a clinical trial of the Kineflex ADR. There is a place in California if you wish to contact them.

Tower Orthopaedic & Neurosurgical Spine Institute
Carl Lauryssen, MD
8670 Wilshire Blvd., Suite 202
Beverly Hills, CA 90211
Coordinator Contact: Manul Hernandez
Ph: 310-855-0751, ext. 2109
Email: manny.hernandez@olympiamc.com
Website: www.towerorthopaedics.com
Website: www.thespinaldoctor.com

Hope this helps.

Margaret
Reply With Quote
  #8  
Old 11-19-2005, 02:04 PM
Mariaa Mariaa is offline
Banned
 
Join Date: Nov 2004
Posts: 1,121
Default

Thanks for the replies.. think I'd like to get hold of the information from Mark's NASS meeting~ Was the information of the meeting being passed around or how was the information to be obtained if desired does anyone recall (do we have to put our names on a list of sorts..copies.. other..?)..
thanks for all replies and suggestions/condolences ~
Reply With Quote
  #9  
Old 11-19-2005, 09:12 PM
ans ans is offline
Senior Member
 
Join Date: Mar 2005
Posts: 1,596
Default

I'd trust Laureysson; fierce intelligence and nice.
__________________
Severe, extensive DDD, considered inoperable by Dr. Regan, Lauressen, & some guy at UCLA. Severe foraminal stenosis (guess they can't operate!) and some spinal cord compression that Lauryssen would fix if gets outta hand.
Reply With Quote
  #10  
Old 11-20-2005, 12:37 AM
sahuaro sahuaro is offline
Senior Member
 
Join Date: May 2005
Posts: 455
Default

re the NASS materials: there was a short list of people who requested the materials; I sent them on to Kim and the next person on the list was paulam. I'd suggest getting in touch with them.
__________________
2001 MVA; C5-C6 disk extruded
ongoing physical therapy, exercise and massage
ESI's, oral prednisone, trigger point injections
foraminal and central stenosis C5/C6 and c6/C7
2007 EMG/nerve conduction shows pattern of chronic radiculopathy
January, 2008: Prestige ST Artificial Disk Replacement, C5/6
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



All times are GMT -4. The time now is 08:13 AM.


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