Snap, Crackle, Pop!

Last Tuesday at the Pain Clinic was interesting. I had a different team of "practitioners" who had needles in some different places than the previous team. I'm not sure which set of needles did it (they had some in my ears, and in my calves, in addition to the ones in my ankles and hands that I get every week), but something unleashed some kind of chi because I wasn't able to sleep very well that night and ever since I've been kind of "energized" to say the least. I'm feeling kinda snappy and getting lots of stuff done, but not sleeping too well. I also had the most pain relief that lasted the longest since I've been getting acupuncture. Go figure.

I'm now noticing that when I move in certain ways that engage the newfound flexibility of my lumbar region, there is a distinct popping, crackling or crunching sensation. I wonder what this is? Is it the actual ProDisc or is it just that the new range of motion I have down there is causing the muscles to crunch around?

I'm kind of liking it, I have to say, the snap, crackle and pop of my newly flexible L5-S1 and my mad flowing chi.

Pain Clinic is aptly named

Last night I had my first visit at the TSCA Pain Clinic. It's different from the regular appointments that I have on Saturdays, as they really pinpoint the places that hurt and try to directly relieve the pain. Ironically, it's by causing more pain.

Well, pain is a relative term here. The discomfort, pressure and heaviness that I felt I was supposed to feel, according to them, as the needles were "releasing" stuff in my muscles. I was very sore when I got up from the table and am still a bit sore this morning, but the big knots that were working on seem to be smaller in size. Yay! I have two more sessions with them in addition to the regular Saturday appointments, so let's hope this continues to improve.

More Prodisc drama

More on the Prodisc lawsuits, and Dr. B is quoted. For some reason, this doesn't bother me; I figure if they've got some financial investment in seeing that a surgery is successful, then the chances are better that it will be. There's probably all kinds of things wrong with thinking like that, but there you have it.

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.

I was over my back ...

This looks and feels the same to me as it has for the past couple months now. Still sore, still feels like it's going to pull apart when I stretch (which I found out yesterday I wasn't supposed to be doing. Oops.)

Talked to Theresa yesterday about the weird burning pain in my upper back that gives me the chills and the willies and the persistent nag of the threat of full blown sciatica shooting down my legs. She repeated her mantra that I'm overdoing it and I should listen to my body. How do I start to listen to my body now? Much of my life has been spent ignoring those tiny tweaks and twinges in order to just get through the day. How else could I have spent years fencing, rock climbing, running long distances? I'm not sure what listening to my body even means.

So today at the gym I only did legs, and I haven't been swimming for a week, afraid I'll get the burning pulling pain in the water and necessitate a rescue by the lifeguard. It's that bad, and I sometimes can't feel when it's coming. I Also can't believe I did it to myself trying to stretch. When will I learn that I'm not competing with anyone and it doesn't matter all that much if I exercise six times a week or three? I'm still getting plenty of exercise walking Tony every single day (but in fact the walking is what brings out the sciatica, what to do?). Today at the gym I was feeling good after a half hour on the elliptical cardio machine and full leg weight circuit; I had no twinges in my legs until I started stretching my quads (which I was told I could and should do), at which point I felt that little shock go down my legs. I'm thinking it has something to do with arching my back, which I did slightly while performing the stretch.

It's clear I must cut back my activites, which I already have been forced to. I miss swimming, I miss the smell of the chlorine and the beauty of our pool; I miss gliding through the water, channeling Michael Phelps, rocking from side to side gulping in air.

Just when I thought it was safe to be so over this whole ordeal, it's, if you'll excuse the pun, back.

Abdominal Incision 14 weeks

*sigh* Again, not much difference that I can see. So little difference that I even forgot to post a shot last week. It's still lumpy and red, and I'm still feeling the little (sometimes not so little) pin pricks of pain that mean that the nerve endings are coming back to life.

I've been swimming, doing the elliptical, some light weight-training and long walks with Tony. A week or so ago I went down to Canal Street with a friend and we had to wander around up and down the same street a few times before we found the store we wanted, and I could! What a difference, just 4 months ago, there's no way I would've even made it to Pearl Paints, much less wandering around in the plastic store and then looking for Pearl River. Yay for my legs!

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!

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."

Ain't Technology Grand?

I'm looking good!
Or so Dr. Balderston says. He pulled the remainder of the surgical tape off the abdominal incision and it doesn't look as bad as I thought it would. He says it's still somewhat swollen, and I can attest to the fact that it is still very sore to the touch. Those red marks on the sides are bruises from when the surgical tape was on and I had the distention problem, causing blisters to form under the tape. Ugh.
He was really impressed with my walking regimen, but didn't give me permission to do anything more than that at least until I see him again in another six weeks. I am allowed to begin doing some upper body work, mostly arms and shoulders (no lat pulldowns, chest or pec work for now), with five pound weights (he started at three pounds, but I got him up to five, ha!). I'm also allowed to start moving my body into different positions, like mild twisting, and I'm permitted to lift and carry up to fifteen pounds. But no bending yet.

I asked him about my still throbbing legs, he said it will go away as I become more used to walking upright (ha, soon I'll be using tools just like a human!). Apparently all my feverish stationary bicycle riding and swimming don't use the same muscles as good old-fashioned walking.





As you can see from the xrays, (click on the images to see them larger)he didn't take out the old rods; there was so much bone grown over them that he said it would have been a much more painful recovery for me. What they did do was cut the rods and reposition them so that my shoulders and thoracic region are now above my pelvis, and not pitching forward (compare to this). The first little red arrow in the xray on the right is where they cut the rod, the second points out the L3-4 fusion with small metal cage and screw, the third arrow points to the ProDisc at L5-S1.

Ain't technology grand?

Do The Twist

Here I am in my "bone growth stimulator." It sounds like a lot of hocus pocus; supposedly this apparatus (like having two picture frames strapped to my body) is supposed to send out micro-pulses that stimulate bone growth, helping the fusion to heal. OK. Hey they gave it to me in the hospital, so I'm using it.

It can't heal soon enough for me.

I'm not allowed to bend at the waist; if I want to pick something up off the floor, I have to squat down, plie-ing like a ballerina. An aching, sore, awkward ballerina trying to pick up her damn ugly-azz slippies (even my doctor made fun of them in the hospital, but they're so comfortable and they were only 7 dollars!) off the floor.

I'm not allowed to twist, even though I've woken up a few times in the night with my hips facing a different direction from my chest. I just now noticed that I'm kind of twisting in the photo above. It's hard not to twist.

I'm not allowed to pick up or carry anything over 10 pounds, though as I said before, anything more than a cup of tea or a book feels like a ton. And twisting and lifting and carrying is strictly verboten. Like something as simple as picking a dish up from the table and turning my body toward the kitchen with the dish in my hand is not allowed.

I can't swim, obviously due to the incisions mostly, but also because the weightlessness of the water, the thing that made me feel so good before, is now not my friend. I could overexert and snap a still healing muscle in a snap.

My recovery time would be much, much shorter if I had only had the ADR, but because I also had a fusion in two of the vertebrae, the healing and recovery will take months. At least it isn't as bad as when I had the first fusion for scoliosis 20 years ago. Then I had to wear an uncomfortable plastic "brace" (read: body cast) for six months. It was sweaty and at times unbearable. I had to wear a tshirt next to my skin under the brace, and anytime I went out of the house I had to carry a fresh tshirt and a plastic bag with me, ducking into the ladies room of whereever I was to take off my dripping wet sweaty tshirt, put it in the plastic bag (PU!), put the fresh shirt on and dry off the brace on the inside and put it back on. Then put whatever baggy shirt I was wearing over it all back on. Sometimes I'd need two clean shirts with me if I was going to be out for a while, and this wasn't even summer, it was October, November, December.

As much as I don't miss that, I do kind of miss the brace. Everytime I step out on the sidewalk now, I'm in fear. Fear of someone smacking into me, of tripping, of those damn delivery guys racing down the sidewalk on bikes, bags of food swinging like maces off the handlebars. Also, it would keep me from moving improperly, like the mindless twisting I do about a hundred times a day, like I'm twisting in the photo above. Not good.

What I can do is walk. And I do it everyday, either outside, in fear, or inside. We are so lucky to live in a huge building, an entire city block. We've got long interconnected hallways on the first floor so I can stroll around in my pjs and slippies and get my exercise without going out.

I've got my first follow up with Balderston on the 19th of this month and I'm hoping he'll give me the go-ahead to do more than walk then. But, I still may not be doing The Twist anytime soon.