I'm going to be interviewed on October 13th for the DVD that the ADR patient foundation I linked to here is producing. Yay!

I'm excited of course to be able to tell my story, but more importantly, this DVD will be used for patient education and will be distributed to spine centers all over the country.

Did you buy the stock?

Synthes keeps going up!

ADR Support group now a Foundation!

Here's their latest update. Kudos to "Harrison" aka Richard Longland, who started it.

"As fall is almost here, I wanted to update you on important issues that I’ve spent time working on this summer. Forgive me, but this is a long but important message.



Insurance Appeals. The overwhelming majority of our members have suffered through the insurance appeal process. While many fight aggressively against their insurers with frenzied letter writing, few patients engage their state Insurance Commission or Offices for Patient Protection (OPP). If you engage the OPP, an independent third-party consultant will review your entire appeal. In the state of Mass., there was only one appeal per year filed with the OPP! One case was even overturned against Blue Cross Blue Shield! Using the FOI Act, I reviewed all the cases submitted to the OPP since 2004 and was shocked by the small number of cases; as well as the variability in appeal formats and judgments (next topic).



NAIRO. The National Association of Independent Review Organizations defines the methodologies that independent third party reviewers use to assess the legitimacy of your claim. After I reviewed the patients’ appeals from the OPP, I was very concerned about the differences among them -- in the formats and outcomes –- and also:



The scientific papers cited within the patient’s appeal;
The papers that are cited by the “experts” hired or employed by the third-party reviewer (as described in the reply to the appeal);
The medical professionals that are chosen to be part of the review process.


Accordingly, I engaged the president of the organization who has been kind enough to review my concerns. Hopefully, this will start a furtive dialogue that will lead to instructive changes for us patients!



Insurance Mandate. There have been a few ADR-friendly changes with insurance companies policies, but we still have a long way to go. Working through my state representative, I am planning to plead our case at the state house. The goal is to create a bill (or some kind of strategy) that requires insurance companies to cover FDA-approved arthroplasty procedures.



While this effort may be good, I have no misconceptions about its chances. Of the 6500 bills that were heard, 50 made it through the lengthy process of reviews (.7 %)! And as of this writing, there is a 16 month backlog. Nonetheless, nothing ventured, nothing gained!



Fundraising. Most spine patients are in dire straits, afflicted by pain and a litany of other troubles that accompany a disability. Few have the dollars to spare for donations, which is why I don’t like asking for handouts! So perhaps you all may consider “plan B”… getting your employer involved!



You may be wondering how this could work. Well, whether your company is large or small, here’s how you and your employer could help:



Some companies will match your tax-deductible donation to a non-profit charity (we are now a 501 c 3 with official IRS status). Even if your company does not have this official policy, some will still match your donation – just ask your CFO, controller of financial executive.


Many of you work at Fortune 500 companies, which are more familiar with making donations to charities. I’ve created a presentation and grant request specifically to solicit donations from corporations, and I can present via Internet or in person to the potential donors.


If you were out of work because of your spine problem and have since returned, you can be a real champion for our cause. All I need is an introduction from you to get me started! Email or call anytime to discuss our next steps.



Quick Survey. Many of you have already seen the simple one-question survey I posted asking patients about how many of their spine levels are problematic. The results are both sad and revealing, as it shows that many people have serious, multi-level disc disease. Please take the survey at your earliest convenience.



Spine Pathologies. Some of you may have seen the recent posts discussing pathogens possible role in disc diseases. In the survey topic mentioned above, I posted an article “Modic changes, possible causes and relation to low back pain,” which is interesting on so many levels (pun intended). This article implies that more specific diagnoses of spinal problems could lead to other (and arguably more effective) treatments. I was particularly happy to see immunological conditions singled out and discussed with specificity. I hope we see many more scientific research and papers in this area.



Candid Camera. Actually, high-definition camera…is coming to you! If you live in the northeast, I’d like to get your candid thoughts about the entire patient experience – or what I sometimes call the “good, bad and the ugly.” These video interviews are primarily for patient education, but I believe that patients will reveal interesting insights appropriate for a diverse audience. This high-quality production will be made available in 2008 as a DVD for purchase. Would you like to be on candid camera? Drop me a line or an email!



I hope this communication was informative. Please feel free to email me or reply in this topic on the discussion board. By the way, “Harrison” is my screen name, my actual name and contact info is below.



Peace to you and your family. Thank you.





Richard J. Longland "



_______________________________

Yo! Buy this stock!

Synthes is doing great, and so am I!

Here I linked to an article in the times that discussed Medicare’s decision not to cover ADR surgery in patients over 60. As it turns out, this is not good news for ANYONE needing ADR, and possibly even fusion. Here’s why.

During my last check up, Theresa mentioned that the pace of their surgery schedule has really slowed as many/most insurance companies are now not paying for the type of surgery I got, that is, ADR combined with a fusion. They’ve narrowed the range of what is covered by adding the stipulation that there can be no other existing conditions, so if a patient needs ONE disc replaced and that’s it, ok. People like me who needed a fusion and a new disc would be shit out of luck. Thank goodness that I got my surgery when I did, as I can’t even think what the outcome might have been if I’d had to wait for even a few more months.

On top of that, I’ve been reading with interest the health care proposals of the three leading democratic presidential candidates (Clinton, Obama, and Edwards). They all seem to include/favor the formation of some kind of “institute” that would research the most effective treatments for the most common (read:expensive) health care issues.

From the NYTimes:

"Along these lines, the three leading Democratic candidates have quietly come up with nearly identical ideas. Deep inside their health care plans, Mrs. Clinton, Mr. Edwards and Mr. Obama have each called for the creation of a national institute to figure out which kinds of medical care actually work. This institute would sort through the scientific research on, say, spinal fusion and help people understand when it may make sense and when it’s likely to be just another big medical expense that doesn’t solve anything."

As back pain is one of the major health care costs, lumbar fusion and I suppose ADR, though the article didn’t specifically mention it, would be researched for their efficacy. Apparently there are some studies that show that fusion is, in some cases, no more successful in treating back pain than other methods. While this is true, and I'm not advocating that anyone and everyone who requests a spinal fusion should be able to get one, I am afraid that the insurance companies will seize on any study that supports a conclusion that means they don’t have to pay for a procedure. The Times article goes on to state that Medicare and the insurance companies would then use the research to “determine when a procedure or a drug would be covered” (read: they’d use the research to deny coverage).

Of course, this is all just my opinion, and wouldn't it be nice if I were proven wrong, but if there's anything I've learned in the past year or so, it's that insurance companies are pretty predictable when it comes to cutting what they cover and putting more of the insurance premiums we pay into their own pockets.

XRays- Six Month follow up

Oh, of course he comes in the room and goes straight for the xrays, saying how fantastic they look (nothing like patting yourself on the back, there, Dr. B). Then he asks me to stand and says how fantastic I look, how straight, and tall, if a bit too thin (I know I need to put on some weight). I can bend over nicely, but still can't bring my leg up to tie my shoes, etc., but I now have the go ahead to begin stretching so I can tie my shoes.

He insists that the sciatica and tearing pain in my upper back is due to my body slowly readjusting to movements that are still fairly unfamiliar to it, such as walking longer distances more often, sitting for longer periods, and gosh darn it, playing badminton!

Of course, I completely forgot to get a new PT script from him, but I can get that faxed over to Pam by tomorrow. He says light weights (which is what I've been doing) should help to strengthen it up, and with strength will come relief from pain. I hope so! I think I'll even tempt fate and begin to swim again, gently this time, so any pats on the back won't hurt too much.

Medicare Denies ProDisc Coverage

From today's Times: This is not good news.

"How'm I doin'?"

Shame on me for not updating, but I've got a good reason; I've been busy doing other things rather than obsessing about my back!

So I'm seeing a physical therapist for the stabbing, tearing pain in the middle of my upper back. It was most likely brought on by me trying to overdo everything cause I just felt so good and ready to try to stretch and work out like I normally do, well, like I normally did almost a year and a half ago. Swimming, which is supposed to be so good, probably should have been done with a bit more restraint than I went for it, but say la vee.

The PT mostly just massages the region around where the pain originates. It's all 'crunchy' cause there are so many knots in the muscles. This isn't a relaxing massage, either, folks. She puts some real elbow grease into it and I'm usually sore just from the rubbing, but I know it's good sore cause it means that blood and oxygen are getting to the muscles that need it. Then I do some light, very light, exercises for that region, and what do you know? It's getting better. When I go back for my post-op visit in June it will be six months and that's when Theresa says they usually start the PT for the lower back, the area that was actually most affected by the surgery, even though what I'm experiencing with my upper back is a result of my whole skeletal structure being shifted around. This Friday will be five months to the day since the surgery, we'll see how I'm doing then.

Abdominal Incision 12 weeks

OK, still not looking too much better, but they say it needs three months to work fully. Wouldn't it look better in three months anyway? It seems that this is similar to Groundhog Day (the day, not the movie), in that if the ground hog sees his shadow it's six more weeks of winter, and if not it will be an early spring. Well, how much earlier can spring come than the second week of March, which is six weeks from Groundhog Day? It's the same thing in my book. Anyway, I digress, but only because I'm just not too excited about the results from the Neosporin Scar Solution so far. I'm hoping that there will be a big improvement all of a sudden in the next few weeks because as you can see in the picture, I bought a two piece bathing suit! It's a TYR fitness suit and it's going to be great for swimming laps. It fits great and I was having a real problem with the one pieces; my torso is longer by at least a quarter to a half an inch, so all the suits that fit my hips were digging into my shoulders because they were too short for me. So I'll be flaunting my scars at the London Terrace pool, I hope no one is squeamish!

Comic relief

At first glance, this xray doesn't look too much different fromt this one, but if you look closely, you can see that the fused area is filling in a bit more with bone.

That's good.

Right after I was shown into an exam room, one of the interns came in to see me. Last visit Dr. B. brought this kid in to see my progress and introduced him, saying that he had "scrubbed in" on my surgery. (Thanks to Grey's Anatomy, I now know what that means.) So this kid (I kid you not, he was like 12 years old) comes in and asks me a bunch of questions about pain, activities, etc. He examined the scars and said they looked "good," whatever that means, and took some notes. I asked him about the slight sciatica feeling pain I was getting when I lean forward sometimes and his answer was basically, don't lean forward like that. *rim shot* Who is this guy, Jackie Vernon?

Dr. Balderston came in a few minutes later and said it looked "absolutely beautiful," and was healing exactly as it should, which of course is great to hear. I joked with him that usually when someone says I look beautiful, they are looking at my face, but I'd take the compliment however it came. He joked back (unusual for him, he's usually all business)that for him, face, back, whatever, it was all the same. It felt so good to joke around with him, after all the seriousness in the past year or so. What a relief! I'm now allowed to start swimming again, and can use any of the elliptical machines in the gym, as well as the stationary bike. This will give some much needed variety to my workouts, and help to redevelop my leg muscles. I still can't believe how much walking still hurts my legs (and feet!).

My next follow up appointment isn't until June (three months from now!) and I joked to Dr. Balderston that if at the three month follow up had the intern coming in first, I wondered who would be coming at the six month visit, the janitor? *rim shot*

But seriously folks, everything is going just like it should, and that's no joke!

Abdominal Incision 11 weeks

This week's installment of the Neosporin Scar Solution Challenge.
It's not looking much different than last week. I'm also a bit concerned about the formation of scar tissue. I'm trying to massage the area gently, but it is still quite sore and I can feel the thick scar tissue that's formed underneath. I don't want it to adhere to any layer of muscle in there, cause then it will look ugly and lumpy and there goes my goal of a six pack by summer.

I see Balderston on Friday and let's hope he gives me the go ahead for more activities (like bending!), and maybe some physical therapy to break up the scar tissue.

Uptown Girl!

Yesterday I went the farthest yet on my own, up to 96th and CPW to my dentist's office. I took the 10th Avenue bus up there and walked the block and a half from the stop to his office. The uptown bus was definitely a smoother ride than the crosstown double length job, with all its weird rattley segments, so even though I was on the bus for much longer (try 40 minutes!), I was ok. On the way home, I was very close to the C train, so I ventured down the stairs and, surprize! It was ok. I was worried again about bumping and jostling, but it wasn't crowded at all and it was really fun to be on the subway again, without the cane and without Tyler and without worrying.

I'm actually starting to feel not only like a normal human again, but a New Yorker! Yay!

I feel good!

I'm feeling like kicking up my heels!

I'm feeling really good lately. I've still got some really persistent itching in the incision area (I guess I can call it a scar now) and a twinge in my left lower back that feels like the start of sciatica, but isn't (a signal from my body that I'm over doing it a bit).

Spoke to Theresa on Friday about the quasi-sciatica pain and got the go-ahead to start riding the recumbent stationary bike at the gym. The reason that they don't tell everyone to do it is because some people have a lot of pain and discomfort when they sit. This can continue up to 6 months after the surgery. Lucky for me, I managed the bike for 20 minutes no problem. I'm really glad to have something else besides walking to do; it was getting boring, and now that I'm walking Tony more than just for "business," I needed another activity for the gym.

Thursday Tony and I walked up to 44th and 9th back (three miles total) to 24th and 10th. It's not a very picturesque walk, lots of trucks and buses up that way. Going south on 10th Avenue is definitely a better option, except it's really cold ; the wind whips off the Hudson like a mother. Most picturesque would be the walkway in Hudson River Park, but that would be colder still, plus Tony hates rollerbladers and skateboarders (don't we all?). Yesterday we went two miles and today too, a mile in the morning and a mile in the afternoon. Plus, I went over to the gym at 8th Ave. (another mile round trip) and rode the recumbent bike for 20 minutes for an additional three and a half miles. I'm also doing a bit of upper body work, biceps and triceps and shoulders, light weights, lotsa reps.

Both scars are very itchy. I still can't bend properly, so I keep my slippers, sneakers and boots (the only footwear I've been in for a year) on a shelf so I won't have to bend to get them. Also, washing my face at the sink and brushing my teeth are still hard. Well, brushing the teeth isn't so bad, it's the spitting, ever try spitting NOT on yourself without bending at the waist? I could bend at the hips, but I'd have to stand in the tub to reach the sink; I'd look like one of those dipping birds Anyway, we moved a small stool into the bathroom. Did I mention the itching? Otherwise I could positively jump for joy! But don't tell my doctor.

Incidentally ...

Here's the statement from the insurance company for my surgery. As you can see (click on the photo to see it larger), the hospital was allowed just over $71,000 for "incidentals." If you think that is bad, we saw the documentation on the insurance company's website showing that the hospital actually asked for $153,000 for the "incidentals." The fact that they're getting just under half of what they asked for sounds cheesy on the insurance company's part, and luckily, our insurance company did cover those incidentals, no problem, so we don't have to pay.

Still, I'm curious as to just what exactly those incidentals were. I mean incidentals are defined as things that are minor, casual or subordinate. Subordinate to what? Well, things that are not incidentals, but essentials.

So is this charge for things like those little bottles of Keri lotion or the infernal baby powder they are always pushing on you when you are a patient? Actually I think those things are better categorized under "sundries," but there wasn't a category on the statement for that. Anyway, I didn't use the lotion or baby powder, so maybe the insurance company can get the money back? Not that I'm so keen on helping out the insurance company, but then maybe our premiums would go down, or something like that.

Do the incidentals include the use of hospital gowns? Cause I brought my own, so can that be deducted too? The day I was discharged a volunteer came in and gave me a small plant; what portion of the 71K was that little schefflera?

Just the room and board alone was close to $25,000. I could have rented a room at a nice hotel in Philadelphia with that money. I sure didn't eat many meals (read: ONE that wasn't sippable, and there weren't too many of the sippable kind, come to think of it) so there should be a reduction in the "board" amount, too.

I guess I shouldn't be complaining too much, as I said earlier, our insurance company did pay for most of the bill, but I just wonder what kind of world it is where insurance companies will pay $71,000 for "incidentals" but won't approve more than one level of TDR (total disc replacement) when a doctor deems it necessary. As in essential. As in the opposite of "incidental."