Doc Guide article on ProDisc: Better than fusion!

Here's a great article on a study involving ProDisc that reports even more impressive numbers than the FDA.

Money stuff

I'm disabled! It's official!

Right. Normally, I wouldn't celebrate this kind of news, but when it means getting some money, at this point, I'm all for it! I love Mr. Tingle in all his Dickensian/Kafkan splendor, as I believe that he, along with my doctor writing a letter stating that I was indeed non-functioning, was a large part of my being approved.

Just this past weekend, with the realization that even if Aetna pays for everything, they won't pay for everything, as our plan only covers 90% of in-patient/surgical care, I've finally gotten off my ass and set up an online shop to make some money and help out with day-to-day stuff like paying the dog walker, since I can't walk Tony as much as he needs, and to partially subsidize the cabs I have to take to go even a few blocks.

Money, and the lack thereof, has always been a sore subject for me, so to ask people to buy my stuff to help me out is hard, but I hope soon I can celebrate getting some money for something besides being disabled (hint hint).

Busy Busy Busy

The other day I was apologizing to a neighbor for not stopping by to see him (he just got out of the hospital) and I actually had the nerve to say that “I was busy.”
“Busy” is relative and it means something different to someone who just got out of the hospital than it does to someone who is working 9-5, going to night school and taking care of a family. And it means something different to me too, somewhere in between the continuum of my recovering neighbor and the school-going-working stiff-nine-to-fiver with kids.

I get up after a few Tylenols and get to the kitchen. Holding on to the counter with one hand, I get a bowl, plate, cup, tea bag, fork, a cup of Egg Beaters and one egg and one piece of non-fat cheese. I lean on the counter with both elbows while the water boils, and the scrambled eggs cook. Carry the whole thing back to bed, the plate stacked on top of the tea mug in one hand, cane in the other.

After breakfast I can usually manage, with the help of the cane and making frequent rest breaks, to walk Tony around the block once. It’s not fun, but it’s fun; I like bumping into other people and other dogs and getting fresh air in the morning. Then I need about one to two hours rest. After that, I might go to the gym, which is easier for me than it sounds. The machines I use support my spine and I’m able to get a good upper body workout and even ride the recumbent stationary bike. I think sometimes people think I’m faking or something, as they see me pumping iron and pedaling away, then hobbling home all slow and bent over. I can do a lot more stuff when I’m sitting, I just can’t stand up or walk.

When I get home, I’m in pain, (not so much from the exercises as the walking and attempted upright movement) so I take something, a few extra Neurontin, or an Ultram. Then I have about an hour or two of rest, food and tea. I usually feel better and a bit “distanced” from the pain, so I might decide to tackle some household project, like a load of laundry. Or emptying and restacking the dishwasher, or running the Swiffer dust mop over the floor, or starting dinner. Or maybe all of the above. These aren’t big chores, you probably do them everyday or at least a few times a week without even thinking about it, maybe while you are also doing something else, like talking on the phone, or feeding your kids, or at the very least, not holding on to the kitchen counter to keep yourself upright. Since I’m not really feeling the pain, and as long as I have the cane or furniture to hold on to, keep going, I say to myself, take advantage of the window of painlessness and get some things done so Tyler doesn’t have to come home to a mess.

Invariably, when the pills wear off, I’m lying in bed later in the evening, barely able to go get any of the dinner I made. Maybe you’d think something you worked so hard for would taste better. It doesn’t. Or maybe it is just the pain medication and my exhaustion by the end of the day that takes my appetite.

That’s pretty much how my days go.

Every once in while, something different, a new challenge, pops up in my schedule. For instance, I had a dermatologist appointment yesterday. Then another day I took the shopping cart (I lean on it like a walker, genius!) to go a block and a half to get dog food. I try to only have one big event like that a day. Sometimes I attempt more than one (in a quest to be truly “busy” and distract myself) and pay for it all the next day with forced bed rest.

Sorry to ramble with such a long post; I’ve gotta go now, cause I really am busy. I’ve gotta go take shower.

Just had a call from Dr. B. He didn't say anything about me developing another curve in the lumbar region, but he did say that L3-4 has "really slid to the side." I sure wish I could see what the hell that looks like. He said because of that, this level will most likely be the level that gets fused. I'll be seeing him again in about a month's time (appointment for October 20) so hopefully I can see the x-rays then, cause I'm really curious as to what a sliding disc looks like.

L5-S1 is "perfect" for a prodisc and since this is the lowest level, it will restore my movement to my hips. L4-5 has "collapsed axially" meaning this is the one that is pitching me forward. That will be replaced as well; it is hardly worth going through this surgery and not being able to stand up, is it? At least not for me.

He said stay as strong as possible and try to do as much stretching as possible without hurting myself. I'm off to stretch!

Just talked to Balderston's NP. I called yesterday and left a message; I wanted to have a brief conversation with him about the xrays that I had on Friday after seeing him. She said that he'll call me, maybe tomorrow as he is out of town today, and tell me what is going on at each level in my spine.

Of course, even though I wanted this conversation, now I'm frantic, a little, wondering why he needs to talk to me. Why couldn't he just give the message to her to give to me that the xrays look fine or they look like they expected them to look? Cause maybe they don't, that's why!

It could also be that they took xrays and it is normal to discuss the results with the patient, especially one going into surgery (fingers crossed!) in a few months. It could be that I'm getting the attention and information I deserve; but then the doubting chatter swells up louder and I wonder, "what if there is another curve?" "What if there is some other problem that will prevent them from doing the surgery?" "What if I'm destined to walk like a hunchback, for ever shorter distances, forever?

All I can do is wait for him to call me and hope that it is tomorrow.

Jesus, this is worse than dating ... no wonder I'm a wreck.

Almost there

We traveled to Philadelphia yesterday for my 8am appointment with Dr. Balderston, nineteen years almost to the day after he did my scoliosis fusion on September 4th 1987. Have I mentioned that this doctor holds a special place for me? He changed my life nineteen years ago and he’s about to change it again, in a big way. Rose petals should be strewn in front of him when he walks and beatific music, like angels singing a joyful chorus, can be heard. Do I even have to tell you that when I look at this doctor, I see a halo, an aura of golden goodness of hope and freedom from pain and disability around him so bright I almost have to turn away? Almost.


Ironically or maybe coincidentally is a better word, the two days leading up to the appointment were particularly hard for me. Trying to pack one little bag for an overnight trip to Philly for two people took the better part of the afternoon on Thursday; go to the bathroom for the toiletries, then walk into the kitchen to get a plastic Ziploc bag to stuff them in. Find out, after walking back to the bathroom that they don’t all fit in the zip bag, so throw them into a small Duane Reade bag and tie it shut as though it was some stinky garbage. Then hobble to the bed and lie down and rest for thirty minutes. Get up, go to the dressing room; get t-shirts and underwear for me and Tyler. Walk to the bed, sit down and fold them and put them in the overnight bag, lay back and rest for another twenty minutes. Make several more trips to get jeans and t-shirts, a sweater, Tyler’s electric razor, sunglasses, maps, but of course not all at once; repeat packing and resting routine till I’ve got everything in the bag, which I can’t lift or carry, by the way, and I collapse in pain and exhaustion on the bed at 6PM. I started at 3.

Dr. Balderston always starts out an appointment by asking me to “talk to him,” tell him what’s going on. I was sitting on the exam table, leaning forward and supporting myself with my hands on my knees, explaining that I could no longer hold myself up, by myself, at all, anymore. He told us that ProDisc was approved.

Really? No kidding. It’s not like I hadn’t spent a lot of time obsessively refreshing the FDA website or waiting for the daily Google alerts we’d set up for ProDisc and Synthes. He added that it was time now to submit this to the insurance company and “do something about your back.” Do I have to tell you that the aura brightened to an unbearably bright corona, the kind you can’t look straight into or you’ll damage your eyes forever, and I swore I could hear a chorus of angels singing, their voices swelling with joy as he said it?

He said he’ll ask them for approval for a three level replacement. Starting at the bottom, L5-S1 will be replaced, restoring movement in my hips. Then L4-5 will “probably” also be replaced, and L3-4 will “probably not” be replaced but fused. The reason for the questions on the other two discs is not financial or bureaucratic but anatomical; it depends on how much those discs have collapsed and whether or not the ProDisc can be physically fit in to the space between the vertebrae.

I asked him to take a look at my back, and pulled my shirt up so he could see the lumbar region, the place where I’m afraid I’m developing another scoliosis curve from being so uneven all the time, my right leg buckling under me and leaning on the cane and whatever else I can find to get around with. He said nothing about what he saw or didn’t see and just responded that he was sending me for x-rays as a first step in going ahead with the surgery. Of course now I’m frantic, over analyzing his facial expressions (or lack thereof; he’d be a formidable poker player) and inflections when he said he wanted x-rays, because now I’m thinking that if it is possible that I have the start of another curve down there, the ADR surgery is out.

So all this is maybe coming together for a surgery date in early November. He mentioned Monday, November the 6th as a possible date. I was stunned that we were at the point already where he had a date in mind. I joked that I wouldn’t be able to vote on the 7th and he said, totally straight-faced, that I could do an absentee ballot ahead of time, like I was really concerned about that!

When he stood up and said that he was going to start the process “right now,” I burst into tears, blinded by that damn halo again.

Now again, hold your cartwheels, for there is no guarantee that Aetna will come back with the decision we want, or any decision for that matter, by early November. Still in all, the ball is rolling, and this is great news. Above all the voices of doubt and fear chattering away in my head, I can still feel the warm glow of hope and almost hear those angels singing. Almost.

Patients/Patience

Did you ever hear the old pun, "I wanted to be a doctor, but I didn't have any patience (patients)?"

I had just about given up on talking to anyone at Dr. B's office without exploding into an angry tirade, so I had Tyler call. Here I mentioned that it had been a week since I'd called right after the announcement came about the FDA approval and hadn't heard back. Just after that entry, I called again, this time asking to speak with someone in scheduling for Dr. Balderston intstead of his NP, (who really is handling all of this very poorly). I spoke to someone who we'll call "K" (no allusion to Kafka or Joseph K intended), who was very nice and understanding when I explained that the not calling patients back business was unacceptable. When I'd called the Thursday before, they said they would call back. Ok, so when someone, especially a doctor's office says that they will call you back, I sort of expected a call back within a few hours or at least by the next day. K explained that the reason no one called is because they were all waiting to meet with Dr. B. and his NP to decide who would be seen and in what order and that both Dr. B. and his NP had been and were still out on vacation and wouldn't even be back until the following Monday.

Well, OK! Why couldn't someone just have called and told me, and the other frantic patients, that? Do any of these "administrators" have any idea what it feels like to need an operation to be able to stand up straight and walk any distance and to be free of pain and then to have the doctor's office who is supposed to do the surgery NOT RETURN A CALL? It feels like you've fallen through the cracks, like maybe you need to start all over with another doctor after all this time, or like you are doomed to just get worse and worse till you are finally riding around in a wheelchair with really strong arms. I told K that she wasn't working for some five-star snooty New York restaurant that could have an attitude and not return calls if they didn't feel like it, this was my doctor. My doctor! To not have a return call from a doctor's office for 7 whole days is unconscionable. It's not like I call all the time and harrass them. K assured me that as soon as they all met and decided who would be getting appointments, they would be calling us all back.

OK.

A whole other week goes by and now I'm out of patience, thinking that I can't stand it, that I would be able to stand it if only someone would call me and tell me that I'd have to stand it another few months, another six months, another year, ok? But just freakin' call me back and tell me! I understand that they were probably swamped with calls, but as I said here, hire a freaking temp nurse! It's not like they weren't anticipating this kind of reaction from their patients. We're desparate, for crying out loud! We're all in pain, and in various states of disability, can anyone blame us for being impatient about when we might have surgery?

The end of this tale does have a sort of happy ending and here it is. When Tyler called on Thursday (a full two weeks after I called the first time: Shame on them!)K immediately said that Dr. B. wanted to see me and launched into a list of available appointments. When he asked what the delay was in calling back, she said that they'd just gotten the list together that morning. Whatever.

Ok, the windup is I go this coming Friday at 8AM. I don't know what he's going to tell me, but at least I'll get some face time and get some questions answered and even if he tells me it is going to be more of a wait, at least I'll be able to have patience.