How this blog saved my life and saved me $100,000

How this blog saved my life and saved me $100,000

Summary: A few months back, I told you about how my neck had gone bad, really bad. At that time, I was in the middle of a six-month dive into pain, alleviated only by gobbling unwholesome quantities of Percoset.

SHARE:
TOPICS: Health
24

A few months back, I told you about how my neck had gone bad, really bad. At that time, I was in the middle of a six-month dive into pain, alleviated only by gobbling unwholesome quantities of Percoset. Three weeks ago last Friday, I had an amazing surgery that relieved my pain and gave me a neck that feels 20 years younger. And it was all because of this blog.

The experience has proven for me that there is a pressing need for a new economics in medical care, especially with regard to the technology we have access to as health care customers (as compared to being "patients"). Patients have patience, waiting for a prescription from their doctor to fix their ills. Customers can do research, issue a call for proposals so to speak, and make decisions that free them from the confines of their doctors' ability to earn fees for using certain products.

In many ways, the medical technology market today is at a stage similar to the computing technology in the late 1980s, when IT departments handled all buying decisions and people were discouraged from bringing anything into the enterprise environment that had not been approved by IT. Today, most people are their own CTO, making their decisions about what kind of computer, wireless handset and network to use, which the enterprise accomodates.

Here's what happened. After I posted about the messed up economics in healthcare, I received email from Tom Rawles at Spinal Kinetics, a developer of spinal disc replacement devices. He said the company was in early trials of its M6 Artificial Disc and that, if I qualified for the trial, they'd be happy to have me.

I'd already been turned down for a disc replacement surgery by my insurer and, despite the fact I have an excellent spine surgeon in the Northwest he did not know of any trials for what I needed, a "multi-level replacement," i.e., I needed more than one disc replaced. In comments on that posting, many of you agreed with me that the insurer was the main culprit.

But I've come to understand that it is also a matter of the sales and marketing channel for medical devices being very narrowly focused on the relationship between the doctor and device manufacturers. In many cases, a doctor can make more money by recommending one device over another. Because of that close link between doctor and manufacturer, some regions have many more options available to patients than in regions that are impractical for startup firms to reach. I should add as an aside, the medical device market is, for the most part, a build-to-be-acquired market specifically because an acquisition is the most expedient way for a startup device maker to get a sales channel. This means the products of large companies enjoy a huge advantage over new contenders.

In my case, the Spinal Kinetics M6 Artificial Disc was entering the very first stage of clinical research in the United States. The company has already sunk as much as $28 million into developing the disc replacement device—they will sell for between $5,000 and $7,000 apiece, the clinic estimated. They are putting the devices into 30 people as a first step toward Food and Drug Administration approval. After this phase, a blind trial will follow, and it will take two to four years for the FDA to approve.

I was extremely lucky to get into the trial. In some ways, my posting was a call for proposal as it the Vendor Relationship Management group has described how customers will query the market for options when buying. But it was also a matter of social connection. Tom Rawles read my blog and it carried some weight because I write for a recognized brand name in technology publishing. In short, a combination of factors came together that don't generally exist for connecting customers to new medical technology. My doctor had never heard about Spinal Kinetics until I showed him the product.

I was also taking an extreme risk. To get into the trial, I had to give my neck over for an experimental procedure. Mine was the fifth of six such surgeries to date. Fortunately, Spinal Kinetics was working with an outstanding spine specialist in Los Angeles, Dr. Carl Lauryssen. As Dr. Lauryssen told me when we met for the pre-surgical consultation, if there was a significant risk due to the surgeon, I'd have the wrong surgeon. I was impressed with the doctor and, after extensive research, I had come to the conclusion that the Spinal Kinetics disc was the most advanced solution—it offers the same range of motion, six directions, that a human disc does, and it was designed to provide increasing resistance to movement with components that make it far hardier than other options.

I took the plunge, though I wouldn't suggest anyone do so without doing extensive research about the company and device, as well as about the doctor and hospital where the surgery will take place.

A new medical device and healthcare economy will demand that customers, the people formerly known as patients, will be able to research technologies, companies and doctors. That also means that technologies, companies and doctors will have the opportunity to develop brands that command premium fees. Ultimately, this will change the way insurers compensate the insured, because it is conceivable that other factors than what your doctor says is needed will come into play. The trading of access to one's body (or information about our bodies) for access to new technology, for instance, could offset some of the cost of a procedure, a factor that should impact the payment by an insurer dramatically in many cases.

Speaking for myself, I am sold on the value of participating in a trial based on extensive disclosure of information. The surgery I had would normally cost about $75,000, according to HealthGrades.com. Since I had two discs replaced, the cost of just the devices was between $10K and $14K, and there were other features of the operating room and hospital that would have cost me $100,000 if I'd paid for this procedure on my own, which was my only option if I wanted to avoid having my neck fused.

Best of all, I woke up without the pain I'd had for years. (Check out this animation of the procedure, which doesn't show the person whose job it was to hold my esophagus out of the way for a couple hours—I felt like I should tip this guy.) The extreme pain of recent months was gone when I woke in the recovery room, and numbness in my left arm and fingers has been abating consistently since the surgery. I lost only two tablespoons of blood in a two-and-a-half hour surgery and walked out of the hospital, without any need for a cervical collar, only two days later to fly home to Seattle. It is an incredible outcome, one for which I will be eternally grateful.

Now, if we can only figure out how to make this kind of outcome more easy to discover and pay for. That's a battle for after I finish my recovery. For now, I am happy to have my life back.

Topic: Health

Kick off your day with ZDNet's daily email newsletter. It's the freshest tech news and opinion, served hot. Get it.

Talkback

24 comments
Log in or register to join the discussion
  • Great story and God Bless You and this Blog

    nt
    D T Schmitz
  • I agree

    How many times have you been to the doctor only to have him/her say, "I don't know what's wrong. Let's try this..."

    I was once diagnosed with a brain virus That seemed very convenient to me since there was nothing that could be done (then) and no cure. I think the diagnosis was hogwash and my symptoms were later diagnosed, correctly I think, as an allergy.

    My granddaughter has had a recurring cough almost since birth about 4 1/2 years ago. Each doctor she has seen (6 and counting) gave a different diagnosis, none of which were correct.

    I could go on and on.

    But of course we must pay the doctor even when they are wrong. NONSENSE! Would you pay a plumber if he couldn't find a leak or for making a leak worse?
    Would you pay a computer repair person for making your computer unusable?

    I think we need to change the system to mandate that doctors get paid only for performance. And we need to find a way to reduce drastically the fees for in-patient procedures. Doctors justify their fees by explaining that they hold our lives in their hands. But when they screw up, it's "Oops. And by the way, pay me anyway."

    I better stop before I start with the four letter words.
    ron.cleaver@...
  • Don't know if you're religious or not, but

    If you are, you owe lots of time in
    church or synagogue.

    Think about it. Your blog was one of
    millions put on the web that day. The
    maker of the device somehow came
    upon your blog. They just happened to
    have the trials going on - for all of 30
    people out of a population of 300
    million.

    The odds of all the above happening are
    probably worse than hitting mega
    millions lottery, but you hit. Sounds like
    a "somebody up there likes me" event.
    j.m.galvin
  • wow

    Awesome news. Its great to see that you were able to get this as apposed to having your neck fused. Which may have ended some of the pain, it would have sucked not having any range of motion.
    Stuka
  • very cool

    Good to hear, neck and back problems have plagued so many for so long, and fusing has been the only answer for most.

    I would like to see more public involvement and a quicker road from testing to availability for these kinds of procedure.

    While I don't believe in the universal health care solution, I think insurance should pay for any valid medical procedure, even experimental, as decided by the doctor, not by the insurance company.
    coffeeshark
  • RE: How this blog saved my life and saved me $100,000

    Congratulations, Mitch. I'd like to follow up over at the Healthcare blog. Stay well.
    DanaBlankenhorn
  • RE: How this blog saved my life and saved me $100,000

    I had a C5-C6 fusion, using bone from my hip and a titanium plate about 15 years ago. Four days in the hospital, six weeks recovery, in a cervical collar (NO degrees of freedom in moving my head for that period, plus no riding in a car or driving!) Harvest site on my hip hurt like Hell for a couple of weeks, but the pain was gone!

    It was worth it (insurance paid all but $11 of the $40,000+ cost,) but I was astounded at how smoothly your procedure went. I can only hope that this gets approved quickly and is widely adopted.

    Looks like you hit the "Medical Lottery!"
    bobhood@...
    • fusion surgery

      I'd add that fusion surgery has improved a great deal in the 15 years since you had yours. Some doctors do cervical diskectomy and fusion out-patient though my doctor kept me overnight. My doctor used a PEEK plastic cage seeded with bits of bone from my pelvis between my vertibrae. I've had almost no post-op pain. After surgery I have restrictions but I can travel by car, I just can't drive. I will probably only have to wear my rigid cervical collar for 2 weeks and that is because my doctor is conservative; some docs are using a soft or no collar after surgery. You should compare artificial disk replacement with the current fusion surgery rather than what you had 15 years ago. I chose fusion because my problem was c7-t1 which isn't a very active joint and artificial disc replacement is not as well proven as fusion surgersy. I have 4 herniated discs in my neck and have only fused the one that was cauing problems. I'm hoping that if I need more surgery in a few years artificial disc replacement will be a good and proven option by then.
      Insurance on the other hand is much worse than you had 15 years ago. I'm already $thousands out of pocket and my insurance company informs me they will not pay for $20k of epidurals and MRIs I had prior to surgery and I haven't even started to get bills for my actual surgery yet.
      OuterLimitSurvey
  • RE: How this blog saved my life and saved me $100,000

    Great story, Mitch. Just getting caught up again on your blog. What a story about the power of social connections.
    alexhwilliams
  • I love happy endings

    Congratz Mitch, great story. And you're right in your conclusion - somehow, some way, we need to make medical procedures like these more affordable and accessible to all in this country. To me, health care reform is the biggest issue we're facing as a nation presently, outside of our border control problems (which "borders" on the criminal). The present system is flat out archaic.

    Bottom's up to Spinal Kinetics -- and better health.
    klumper
  • Great Story!

    I also have disks in my neck, at the beginning stages of deterioration, so this blog was of special interest to me.

    Thanks for sharing!
    linux for me
  • This is a fool's bargain

    Regrettably, health care consumers (aka patients) are not skilled in diagnosis. This is not something you can learn over the internet or even from a book. It requires years of experience. That's why physicians have residencies to do after medical school. Specialists (such as those doctors who would be doing surgeries) are particularly BAD at diagnosis.They are too mired in their own fields to think of other possibilities.

    Diagnosis does NOT require particular intelligence. It DOES require experience. Attempting to cut the primary care physician out of the loop to save money doesn't work. The primary care MD is the MOST IMPORTANT cost-saving mechanism in that loop.
    trentreviso
    • RE: fool's bargain

      It didn't seem to me that there appeared to be a need to "remove" the primary care physician out of the loop at all. The point was that of the power of social connections and how we are now more empowered to be able to utilize technology to better our OWN knowledge, allowing us to make a much better informed decision and having a more solid understanding of what's really going on. This could lead to having a user who might be able to tell if a physician is looking to push a particular product of piece of equipment to benefit the doctor rather than looking more accurately at the "best" option for the patient.
      neonoid16
    • Diagnosis isn't the issue

      I completely agree that diagnosis should be left to the
      doctor, and I didn't write what you suggest.

      Being an informed customer of medical technology is never
      a bad idea. Only a fool would rely blindly on a doctor, a
      lawyer, or a technology writer.

      Additionally, the primary care physician wasn't even
      mentioned in my posting?though my GP was the first to
      diagnose my problem as an impingement of the nerves at
      the C6 or C7 vertebrae. The doctors discussed in the
      posting were all specialists, and there is evidence of the
      geographic limits on new technology, as I explained. If we
      can increase the flow of information, that can be
      remediated, and perhaps we can create new economic
      forces to help speed new technologies to market.

      Finally, cost-savings isn't the most pressing issue when it
      comes to new technology. Rather, we need to find ways to
      overcome early-stage economics that accelerate
      efficiencies in medical technology, as we have in consumer
      electronics. We can have less expensive high-end
      technology for everyone if we move the market in this
      direction through partnership between doctors and their
      patients.
      Mitch Ratcliffe
  • RE: How this blog saved my life and saved me $100,000

    You just described the predicament that I'm in. Two discs needing replacement and antiquated insurance. I have a top doctor well-versed in artificial disc replacement, but i don't have the $$ in my pocket. Do you know if they are still doing the trial?

    In any event, thanks for the info. Something to follow up on ...
    kmclucas
  • RE: How this blog saved my life and saved me $100,000

    My name is Nikki and I had the same surgery through spinal kinetics on May 28, 2008{only a week ago}. However I only had one disc replacement{C5-C6} I do not feel like I had surgery only just last week. I only wear my cervical collar when I am sleeping and thats only for protection. I feel better and better as the days go by. I think the itching from the tape on the bandage has bothered me more than anything else, especially since I can't take the tape off for another week. Thank God for spinal kinetics. I am a single mother, on Medicaid, and they would not cover a disc replacement, at all. My only option was a fusion. I am 28 years old and did not want a fusion being so young. I didn't want to have limited mobility. But I am most positive that it will not take a full 3 months for me to get better. I feel like I will be over this healing process very soon. I know I absolutely made the right decision. And before long, mine and my children's lives will be back to normal and we can begin to enjoy the things that we love to do together, once again!
    halozglow
    • I'm glad it worked for you, too!

      Great to hear that the device is working for others!
      Mitch Ratcliffe
  • RE: How this blog saved my life and saved me $100,000

    What I want to know is who is paying off the insurance so that this surgery is not available to us yet. I have a herniated and buldging disc in my neck at C6&7. Insurance will only pay for fusion and I REFUSE to go that route. I am a healthy 45 year old and they have been doing this since the early 80's in Germany. What is the US problem!!! They still consider it "exploratory" and not enough documentation because it is not done in the US. I need the same medical miracle!

    Donna
    donnapace
    • FDA

      The FDA is far more conservative than similar regulatory agencies elsewhere. The down side to this is that we wait longer for innovative products but sometimes it protects us from defective products. In the news recently a hip implant that was used overseas was recalled because of problems found in US clinical trials. Had the FDA approved it like other nations did the defect would not have been found.
      Due to my stenosis my right hand does not work very well and after 6 months the muscles in my hand and forearm have atrophied a lot. The longer the nerve is pinched the more permanent damage to my nerve. For me it was a no-brainer. I'd rather give up a few degrees of neck motion to avoid loosing right hand function. My doctor said that post-op I may no longer be able to touch my chin to my sternum. I can live with that.
      OuterLimitSurvey
  • Dr. Lauryssen

    Agreeing with a blogger above- you won the medical lottery and it's absolutely great that you were able to get the right treatment for the pain.. You had the absolute best surgeon you could have had. I've been a patient of Dr. Lauryssen's since I was 15 years old and after he moved out of the St. Louis area, I am 33 and have yet to find another that even compares. It was very tempting to travel to California when it came time for surgery #4, and can tell you that I will most definately be traveling to see him when it comes time again (and it will). Can tell you that it gives me a great feeling to see when Dr. Lauryssen accomplishes all these great things and receives his much deserved recognition, because if it weren't for him I probably wouldn't be able to walk let alone work in the medical field the way I do!!! Congratulations to You, and thank you for posting such a wonderful story.
    cjennifer81