No-no's on fusion!

[dshobbies]

Just got back from Las Vegas, which was a test... not sure if I passed or not... but read in their newspaper that a recent concluded that fusion after previous back surgeries was definitively not recommended.

Mark, any comments and what will this do for getting insurance companies, who use the alternative of fusion, to finally approve adr's?

Dale

[mmglobal]

Man-oh-man, with spine surgery, as it is with information you get from newspapers, it's buyer beware! I read the article and have seen many studies and papers presented that show similar data.

It has been said that: "70% of the people with mental health issues who go to psychiatrists get better. 70% of people with mental health issues who don't go to psychiatrists get better." It would seem as if shrinks have no effect? I don't think so... I contend that the numbers may be correct, but it's not the same people!!! Some who got better through psychiatry would not have gotten better without it. Some who did not get better with psychiatry would have gotten better without it.

What are the factors involved? Patient selection AND doctor selection! Sadly, I have too many clients who's doctors did the wrong surgery. You would not believe how egregious this is. "I cannot do the surgery you need, so I'm going to do a surgery that I can do." People who have very clear indications of major pain generators at levels that are simply not addressed. They don't say, "I can't do that... here is the name of someone who can." They do a surgery that has no chance of working in the hope that some improvement will be enough to satisfy the patient. This is an example of bad patient selection and bad doctor selection. Unfortunately this is all too real, but this has nothing to do with the surgery being good or bad. Cases like these are included in the numbers that will be used to determine if the surgery is good or bad.

Many spine patients understand that our problems may improve. Disc herniations may shrink. Unstable and painful situations may stabilize and get better. That is why I suffered, functionally disabled for 2 years while I was afraid to proceed with surgery. Do we know who will get better and who wont? Not really, but there are some who obviously have a better chance than others.

It does not surprise me that a literature review will turn up much supporting data that makes it seem as if this spine surgery business is crap. I think that you can substitute ADR for fusion in the reports... they'll dig up the bad surgery studies and juxtapose them with the good conservative treatment studies. (Ya think the insurance companies would like to have more political cover to deny surgery?)

As I support patients through the decision making process we always discuss my question number 2.... "do you have any reasonable expectation that this will get substantially better without surgical intervention." For some the answer is maybe... for those who haven't been in this long enough, the answer is "I don't know"... for some, there is no way that things are reversing and their options are limited.

If they stratified the population into groups by severity of pathology and other relevant factors, they'd learn that there are some groups that are frequently operated on that should not have surgery, while there are other groups that don't stand a chance without surgery. Broad statements about a broad overview of a broad population have little value.

To answer Dale's specific question, I don't think that this improves our situation with insurance companies. I don't believe that insurance decisions are based on appropriateness of medical care or common sense or ??? I believe that it's about money and studies like these are designed to give them more ammunition and further embolden them to make more of the outrageous decisions that we all see over and over.

[sahuaro]

Mark:
Your response needs to be published somewhere--perhaps as a letter to the editor of the newspapers running that article?

[Poncho]

A very comprehensive answer Mark!

As I learn more about business stuff (I'm in an MBA cirriculum) - I am learning that many businesses have a conflict of interest of some sort or other.

With insurance companies - especially those that are publically traded, they really don't have a responsibility to us (in some ways maybe) - but they do have a responsibility to increase share holder wealth. Their goals are in alignment to attract customers that are low risk to increase revenues, prevent their customers from becoming "stop losses", and operate as efficiently as possible.

Unfortunately, it is all about the $$$. Atleast, that is what my profs have informed me time and time again - no matter what the industry is. I think that it is okay for a business to earn a profit. However, when certain ethics are involved, I begin to have delimmas. I feel as though if patients have paid their premiums and become ill or injured for whatever reason, why not cover them for the procedure that works the best for their particular case? Not every patient's medical condition can be painted with the same brush.

We as patients need to be our own advocates and be persistent / proactive with our healthcare needs. It takes lots of research, an open mind, and an objective eye (mind too).

Just my 2 cents

Sy,
Poncho

[annapurna]

Poncho,

I could not agree with you more!!! It's great that someone studying the business world agrees with what I've always felt to be true. I no longer trust my insurance company to do ANYTHING in my best interest. I pay around $1000 per year for my company-sponsored HMO and feel happy when they pay for anything at all. Since it's an HMO, they won't pay for ANY medical care I receive outside of the state of Utah - period. Additionally, they have gotten more and more reluctant to pay for my pain management, diagnostic imaging, and physical therapy.

At the same time, I understand their need to make a profit. They do have responsibilities to their share-holders. On the flip side, we as patients need to have some recourse when an insurance company prevents us from getting the "surgery we need" as Mark put it.

While few of us have the financial wherewithal to simply self-fund all of our spine care needs, there are ways we can excercise some degree of independence from the insurance companies:

1) Take charge of your back and your life and assess how much of your own money you're willing to spend on your spine. As long as we refuse to even consider paying for things on our own, we are totally at the mercy of the insurance companies.

2) Vote for state and federal legislators who support the rights of medical practitioners to give substantial cash discounts (like 50% or more) to uninsured or underinsured patients.

3) Take FULL advantage of tax-deferred medical savings plans available to both employees and the self-employed or retired. The IRS has several new types available to meet many different health-care needs.

4) Save money in the currency you will need. Since the US dollar seems to be on a never-ending slide, it may make sense to save money in Euros if you know you are likely to be going to Europe for surgery in the future. This approach may also result in lower currency exchange fees when you actually pay.

5) Read and understand EVERYTHING in your country's tax code the pertains to medical tax deductions. You would be amazed at the number of things that are deductible including travel, lodging, braces, computerized medical records transcription, and some patient advocacy services. It all adds up!

6) If travel will be necessary, start saving up airline miles to reduce flight costs. This can make a big difference if overseas business-class travel is required.

These are the little strategies that have worked for me - I'm sure that there are more. Best to all.

Laura

[dshobbies]

It's told that good ideas are born out of necessecity... and I have a good idea. There is too much wrong with our country today, medical care being only one concern, but most, if not all, have a common link. We live in this great free country that has become anything but of, by and for the people. Power and money are the only true influences of our politicians. Deep pockets hire lobbiests to push their agendas, tempting even the lowest level public servants to serve themselves.

HMOs and others wield control through campaign contributions as well as other 'legal' political stradegy maneuvering. My question is, if our government is supposed to represent people. why are businesses allowed to compete against us? My idea is to pass legislation (fat chance) to completely elliminate all political intervention by any and all businesses, effectively giving us back our government. Though some organizations represent groups that individually cannot effect change, en mass gives them the power to compete and definitions would need to be well defined. But as long as HMO's are allowed to dictate medical care and while I'm on the subject, oil companies are allowed to price gouge because the polititions are being effectively bought off through legal bribary, we the people are most definitely not being represented.

So while we're battling insurance companies, perhaps our energies should also be directed at getting businesses out of our government's pocket.

Thanks for letting me vent and I'll get off my soap box now!

[Tim]

Hi Dale and Mark
Sorry to steer you all away from money and politics but returning to the original post by Dale what exactly are the reported problems with fusion following previous spine surgery.. Are we talking increased risk of pseudarthrosis, nerve damage etc. - if so do you have any details on the figures?
many thanks
Tim

[dshobbies]

Sorry Tim,

I get very caught up... the article I read in the paper simply expressed both no relief from original symptoms as well as causing others. I think Mark is your man on this one.

Dale

[Tim]

Thanks Dale
As someone whose had 2 previous spinal surgeries including ADR and am still considering fusion as a solution to continuing problems this is relevant to me..
Al the best
Tim

[dshobbies]

Tim,
I am so sorry you've received no relief from your pain even after your adr, and Dr. Zeegers is the best. Has he shed any light as to why this procedure failed to relieve your symptoms? I'm sure you've explored all your alternatives but the reason I'm asking is for others who might find themselves in a similar situation.

I wish you all the best, Dale

[Tim]

Hi Dale
sorry I have'nt replied for a while. My story has been well publicised on various other forums but if it's of any help to others it can be found here:
http://adrsupport.org/eve/forums/a/t...1/m/5281042181
(fifth topic down - spineally challenged) - I hope it's OK to post external links, if not apologies to Mark..
All the best
Tim

[mmglobal]

Tim, no problem posting links to other forums. I believe that sharing information with the patient community is more important than turf. Members here are in a fight for their lives... share whatever information you think will be useful.

Mark

[Cathy]

Hi everyone. This is my first time posting here. I'll try to make this as short as possible. A year ago August (2005) I fell and herniated L4,5 badly. I had a discectomy that November, but the following week I simply rolled over in bed and re-ruptured it. I had another discectomy in Feb. 2006. Unfortunately, I have continued to have tremendous pain. The latest MRI has shown that there isn't enough disc matter left and my vertebrea are hitting on one another. My surgeon said I need a fusion (he doesn't do ADRs). I have been doing research on ADR surgery and have decided that it is what I would rather have. My surgeon is supportive of my decision and said that there is a doctor in Melbourne FL, which is several hours away from me, who does ADRs. I called his office yesterday, but his staff couldn't even give me a ballpark number of how many of these surgeries the doctor had done. After I prodded her a bit more, she said that he has probably done a minimum of 20. That does not seem like enough experience to me. Then I called the Texas Back Institute. The woman there spoke of how great the doctors were and what wonderful results they had. However, when I mentioned that I had a fusion at L5, S1 ten years ago she immediately said that she didn't think I would be a canidate for ADR for that reason. With my hope dashed, I called Jim Rider who is a contact person for Dr. Ritter-Lang at Stenum Hospital. He was very enthusiastic and said that Dr. Ritter-Lang does ADR sugeries on patients who have had fusions all the time with great results. Unfortunately, he said that they only take cash up front to the tune of $30,000, I am a work comp patient and have been out of work since my injury. Therefore, in order for me to go through with this I would have to sell my home. At this point, even though it would break my heart, I was considering it. My hopes of having the surgery that I believe is the best for me were restored. That is until I just read some feedback from others, some of which have gone there with horrible results. Once again, I am at a loss.
Now I am thinking of contacting Dr. Zeegers to see if there is any chance that he would take me as a patient. I am hoping that he is willing to accept work comp patients because I truely don't want to be homeless.
I have only read good reports about him. However, I don't know how to contact his office. I only stumbled onto this site moments ago. I have heard Marks name mentiond numerous times also, I believe injunction with patient avocacy. I'm not even sure if I am in the right forum to contact either. I would appreciate any guidance. Sorry this was so lengthy.
Cathy

[dshobbies]

Hi Cathy,

Welcome to this forum and no need to apologize for any length of your post. Everyone entering the adr world is confused and directionless. Please, whatever you do, do not go to the Stenum Hospital. Dr. Zeegers is great but I don't believe he takes wc claims.

Also, too many of us took out second trust deeds on our home to have this usually cash, surgery.

However, before pulling your hair out, please talk to Mark at globalpatientnetwork.com. He'll help you steer the right course. I wish you every luck,

Dale

[Cathy]

Thanks Dale. I will contact Mark right now. I truely am losing hope and I hate feeling this way. I am normally a very positive person with much faith, but I feel beat down. I guess I need to pull myself up by my boot straps.
Thanks again,
Cathy

[Cathy]

I just posted a response to the replies that I got from my first message, then tried to go to the website that Dale suggested, followed by coming back to this forum, and I noticed that my reply is not on the board. At any rate, I wanted to thank those of you who responded. Also, I want to let Dale know that I went to the "globalpatientnetwork.com" like he suggested in order to contact Mark, but I didn't see any link to him. Perhaps I did something incorrectly.
Cathy

[dshobbies]

Cathy,
First, I'm a she and Global Patient Network is Mark, and this is his forum. mmglobal is Mark... so Mark, how about telling her how to get in touch with you!
Dale

[mmglobal]

Most websites have a 'contact us' button on the navigation bar (where you get the buttons used to navigate the website.

Anyone can contact me on the phone numbers and email addresses on any of the websites discussed.

[Cathy]

So sorry for the gender mix up Dale Thanks again for the info. Have a great weekend and a wonderful Thanksgiving!
Cathy