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Hi and welcome!
When you have a minute, go over to the New Members Forum and introduce yourself to the group. Your intro will just get buried here in my thread :wiggle: |
Barrow Institute Update
Dealing with The Barrow Institute has been a frustrating journey so far. They wouldn't let me set up an appointment until after the surgeon reviewed my Cervical MRI films and package (I understand that) but, it took 2 months to get into see him after they received the package. His office told me multiple times he uses the Mobi-C but, he informed me at the appointment he does not. He uses the ProDisc-C and wasn't a fan of it either. He recommended a one level fusion at C5-C6. That appointment was sort of a waste of time. So, the doctor referred me to their Mobi-C surgeon one month ago as I told him I was not interested in getting a fusion and wanted to look into ADR. The new surgeon's office would not let me set up an appointment until he reviewed my Lumbar and Thoracic MRI films. Okay, I don't like it but, I understand the reasoning. Problem was that the disc and report were sent to the first surgeon's office and they failed to send it over to the 2nd surgeon. I was chasing that problem down for about 4 days. I still have no idea if they sent it over because I took care of getting the MRI report to them. Now, I'm waiting for the 2nd surgeon to decide if he wants to see me. I'm still sitting around waiting without an appointment!
I sure wish I lived in Colorado, California or Texas right now! The Barrow Institute is the top facility in our state. I guess they are really busy and there isn't much else to choose from here! :( 2nd Update: Just called and the 2nd surgeon Dr. Chang who said he agreed with Dr. Porter regarding the fusion. I asked "So, you're saying he does not think I'm a candidate for ADR?" Her reply "Oh, let me put this back to him and ask. You do realize that your insurance will probably not cover the surgery!" I told her I'll cross that bridge when I get to it. It feels like I'm just spinning my tricycle wheels! Absolutely no feedback on the Lumbar and Thoracic MRI's either! |
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The Barrow Institute's Mobi-C surgeon Dr. Chang determined I was not a Mobi-C candidate because of my prior minimally invasive surgeries so, he won't even allow me to set up an appointment to see him. It was like pulling teeth to get that answer! Dr. Porter at the Barrow Institute thinks I'm too old because I'm in my 50's. He will under perfect circumstances (i.e. healthy person in 20's or 30's) do the Pro-Disc C surgery. However, both the surgeons at Barrow agree that I should get the fusion surgery. No surprise there. This sadly is playing out exactly as I anticipated it would.
There are no other Mobi-C surgeons in my network in Arizona. I can either wait until January 2016 when I can change my insurance plan to continue fighting this fight in my state (I think that's a wasted effort) or go to Europe and pay cash for the surgery or find a more seasoned ADR surgeon in the U.S. that thinks I'm a candidate and pay cash for the surgery. I think this thread is just about dead but, before I end it, I'll see what Dr. Zeegers in Europe says about me being an ADR candidate. Dr. Bierstedt thinks I am a candidate for a two level cervical ADR surgery. Stay tuned ... |
I'm sorry to hear you are in this place. I asked my dr here that does ADR with mobi-c and pro discL, he said the biggest reasons not to do it are osteoporosis or allergies to metals. After that, he would look at some other minor things. During surgery he would be ready to do fusions if necessary.
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Update
It was good to hear that NJ Gene did so well with his 1 level cervical disc surgery in Texas! Cost excluding traveling expenses was $22,400 for a Mobi-C. He's another successful member of the Mobi-C club and I'm so hoping it stays that way! :clap: That was a very reasonable cost for the surgery from a very respected surgeon if anyone reading this is looking to have this surgery in the U.S.
My Mom passed last Friday so I've been pretty paralyzed physically and emotionally this last week. It is honestly the worst event I've experienced in my life. Emotional pain turns into physical pain for me so, I've been trying hard to be as calm as possible but, it's difficult. I wish I had my surgery planned already so I could use it to distract me and have something to look forward to but, as hard as I have tried to find the answer, my search is still not complete and as most on this site know, it's hard to do this when in pain. I tried calling several other surgeons at the Barrow Institute but, their office staff was not very accommodating. I did find out that no surgeon at their main location does ADR after making a ton of calls and finally reaching someone in Administration who knew what was going on at the Institute. What a huge waste of time I have spent with this supposedly top notch spinal hospital! Four of their surgeons are listed on the Mobi-C site and some of the bios say they do ADRs but, I'd have to find one not at the main hospital location. Plus, none of them are advertising that they are Mobi-C doctors so, that doesn't give me a warm and fuzzy feeling. I called my insurance company and told them I was gridlocked in their network because most of their neurosurgeons are at Barrow and most won't see me because of my prior surgeries. They said they were not surprised as they had heard this before! (Keep in mind, I have no hardware in me so, this is kind of surprising.) The insurance company said I could go to my primary care and have her request that I see a surgeon out of network. I asked if I could go out of state if approved and they said "yes." I asked if I could go out of country and they said "no." It's just another hoop to jump through and they could still say no to me so, I don't know if I'll go this route. I think I have to pick out the surgeon first so, it's a bit complicated. I am so tired of trying to find a surgeon in network and fighting the insurance battle. I'm six months into the process and really no further along in the U.S. with the exception of an offer to fuse my neck but, the surgeon telling me that he didn't think it would help me with much of my pain. So, I'm hoping I get some answers from Europe soon. After that, I'll know better what to do next. |
Many fusion surgeries unnecessary
I came across this data today when searching AGAIN about fusion surgery and how it makes surgeons rich and how it is under scrutiny for being medically unnecessary at times. "From 2001 to 2011, the number of spinal fusions in U.S. hospitals increased 70 percent, making them more frequently performed than even hip replacements." In the first link, you'll find a spreadsheet download for Excel. It will allow you to see some statistics on the surgeons in your area.
Tapping into controversial back surgeries - Page 2 - CBS News I found this article to be disturbing. It's sad to me because when people agree to spinal fusion, they are in pain and easily convinced to have the surgery. The so called "golden standard" however, doesn't have a great track record for reducing pain from what I've read. Tapping into controversial back surgeries - Page 4 - CBS News Below is a statement from Dr. Daniel Resnick, Vice Chair of Neurosurgery at the University of Wisconsin School of Medicine and President of the Congress of Neurological Surgeons. "Dr. Resnick also emphasized that there are many cases where spinal fusions are clearly necessary. The procedure is widely accepted for treating major spinal deformities (like scoliosis), fractures, tumors, infections, and spondylolisthesis (slipped disc) in the lower back. But some of the nation's top spine surgeons say they rarely perform it for simple back pain, degenerated discs (or "degenerative disc disease"), stenosis (a narrowing of the spinal canal), or a herniated disc. More than 480,000 spinal fusions are performed in U.S hospitals each year, making them more common than even hip replacements. The annual cost of these surgeries is more than $12 billion, according to the Agency for Healthcare Research and Quality. Experts disagree about how many may be unnecessary, but Dr. Richard Deyo, a critic of the procedure and professor at Oregon Health and Science University believes it could be as much as half. For Medicare and Medicaid patients, taxpayers foot the bill." Info in spreadsheet they had for Texas Back Institute below. Note that Dr. Blumenthal and Dr. Zigler showed zero or "under eleven.": http://s16.postimg.org/ff3jzwpg5/TXBACKSTATS.jpg |
U.S. Doctors
I'm still waiting on my insurance company to make an exception and allow me to travel to Dr. Pettine in Colorado. Who the heck knows how that will shake out since insurance companies are just a pain to work with ...pun intended LOL. I'm grateful to my primary care for helping me to fight this battle. A good primary care doctor makes all the difference. Much to my dismay, my wonderful doctor of 10 years closed her practice and it took me two years and moving through several other doctors to find my current one. I'll just say it again...I'm grateful to her and her office!
Dr. Clavel recommended Dr. Chris Yeung in Arizona. He too is not in my network but, I was aware of him. The reason I didn't seek him out is because his office said he still uses the Prodisc. I would only consider the Mobi-C in the U.S. but, since I now know I need three levels done in my cervical spine, I have now ruled out the U.S. My challenge has been to try and find a U.S. based surgeon who will see me after I have surgery in Europe. It may not be necessary but, it's always good to have a back up plan. Hopefully, one of these surgeons will fit the bill and my insurance company will allow me to see them. |
No surprise, the insurance company turned down my request to go see Dr. Pettine in Colorado. I'll have to appeal that decision and regroup. I swear, insurance companies sure do hinder the healing process. Even though Dr. Pettine is in their network in Colorado, they still decided I should stay in my backwards state for care! Frustrated today!
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Maybe your insurance company thinks you are going to make them pay for travel to get there. You have to be reasonable, they need to not pay out if the CEO is going to make his $20 mil this year. Think about all those house payments he has.
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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! |
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! |
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 ;)
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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. |
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. :insane: |
Two Level
Hate giving away the secrets, but two level is about 42K US.
This does not include travel. |
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