New Windows! And I don't mean Vista!!

On a more mundane topic, my new windows are being installed this week. Lots of $$$, but they're really nice. Got a good installation crew (Angie's List rules!), they'll finish up in a couple of days. It'll be interesting to see what the difference is in my heating bill this winter - the old windows sealed poorly, and were all single-pane. These are high-end, argon-filled, low-e, spiffy windows. It's really noticiable in the afternoon sun, one set of old windows let in a ton of heat, move over to the new ones, no heat at all!

Looks like it'll be good for a tax credit, too!

First Opinion, Revisited

OK, back to the first neurosurgeon with the list of questions that I asked the second one...

Strangely enough, the first guy was actually easier to deal with than the second guy. He explained that the differences in diagnoses was probably due to conservatism. That, and my unspoken observation that the second guy didn't test for Babinski's reflex, which my right foot is positive (take a fingernail and move it stiffly along the bottom of your foot arch, from the heel, along the curve, to the ball. If your big toes don't twitch, or curl down, that's normal. If they twitch up, that's bad, and an indication of spinal cord damage. My right big toe twitches up). Hence the first guy saying I've got myleopathy (bad), while the second guy says not.

Myleopathy=surgery needed soon, no myelopathy=no surgery needed.

But, the first guy said that he's OK with monitoring the situation until something changes, as long as I'm aware of the risks - I'm more prone to spinal cord injury in car accidents or falls, and if I wait too long, the bony growths on my vertebrae will be difficult to remove, as there's not a lot of room in the spinal canal to start with (hence my problems).

He did acknowledge that the laminaplasty would have placed me in an unusual position for later ADR, as not a lot of ADRs have been done with previous laminaplasties - probably a red flag for insurance. Plus, he's only done 3-4 previous laminaplasties (it's a pretty new procedure), not a huge track record.

The interesting thing is that in talking about Dr. Bertagnoli (whom he hadn't heard), he was much cooler about the possibility of going abroad for surgery. I told him I'd send him some links for Dr. Bertagnoli. When I asked about getting X-ray and bone density tests, he said he'd authorize that. He even said that he'd be interesting in following my progress after getting surgery abroad if I chose to do so - the second guy wanted nothing to do with it if I didn't have it done here. He repeated the concern the second guy did about if problems arose, it'd be difficult to find help here for devices not currently being used or approved by the FDA. That's reasonable...

He also pointed out that at this point, other than some isometric exercises, there's not a lot that physical therapy can do. The disks are shot, and that's that. The isometrics will be good for strengthening the neck muscles, but moving the neck around a lot is bad.

So, it looks like I'll probably be going to Germany in the next year or so, unless some of the devices undergoing trial get approved. It'd sure be nice to have a guy who's done a ton of these do it, rather than someone who just started...

The Second Opinion

I got a second opinion from another neurosurgeon yesterday. That was a very interesting experience. One of the more interesting things that he said was, "I bet you had a hard time finding a neurosurgeon that would give you a second opinion", which was true. It's a small community, and I don't think that they like to second-guess each other.

This surgeon works out of OHSU, which is a different hospital in the first neurosurgeon I went to. In fact, the first surgeon interned here. I figure that a different hospital and a different surgeon would provide different viewpoints.

So, the surgeon looked at the same MRI's that the first surgeon did, and repeated the same neurological tests that the first surgeon did; but came up with different results. He agreed that I had cervical spondylosis, but that I did not have significant myelopathy, which the first surgeon thought I did. The short of it is, the surgeon didn't think I needed surgery immediately. He said that I would definitely need surgery in the near future, but unless my symptoms changed or increased, that that near future could be several years away. I noted that he took great pains not to criticize the diagnosis of the first surgeon, even though he had a different diagnosis.

Aside from telling me things I liked hearing, I felt I had a better rapport with this surgeon as well. I just seemed to get along with him better than the first surgeon. One of the things I keep hearing is that patients really need to be able to feel good about their doctors, so I think I'm going to make him my neurosurgeon. I have an appointment with the first neurosurgeon again next week, when we will go over my list of questions, but I'm pretty sure I'll go with the second guy.

One of the interesting things that came up was that he had implanted the Prodisc-C while a in a fellowship in Seattle. I asked him if he had heard of Dr. Bertagnoli , and he very neutrally replied that he had, but did not elaborate beyond that. He made it quite clear he wasn't enthusiastic about the idea of what he called "medical tourism" - his main concern was that if any complications arose you were not close to your doctor to get them dealt with. That's a reasonable concern, and I can understand that. He didn't slam Dr. Bertagnoli, just acknowledged that he knew of him.

The short of it is, this doctor felt that it might be possible to wait a few years before surgery, thus allowing more implants to be qualified and available in this country and with FDA approval. As long as my symptoms don't change or increase, the longer I wait the more options I have. Who knows, insurance may even cover it then.

However he did say that if I needed surgery now, it would be fusion. He feels that fusion's supposedly 95% success rate is hard to argue with, and that with the currently approved implant (the prestige) I can't have two levels done. Apparently the prestige hardware is not capable of being used in adjacent levels - it just doesn't fit. that's also the same reason why you can't have one level fused and a prestige disc above it-again the hardware just won't fit together.

So, for now I have a prescription for some physical therapy, and I'm going to get an ergonomic evaluation of my workspace at work to help ensure that I do not place any unneeded strain upon my neck.

So much for email...

Got tired of waiting to hear from neurosurgeon #1, finally called the office - his admin said that he had left a note in my file (when they were going to get back in touch with me is anybody's guess) that since I had so many questions, I should come back and see him. In other words, if he's going to spend that much time on me, he should get paid for it. Fair's fair, I guess.

Got a bill for the evaluation by Dr. Bertagnoli - 300 Euros ($408). Interestingly enough, they take PayPal. Easy for me, easy for them - no worries about fraud or funny money.

Funny thing at work - we had our semimonthly staff meeting, and my boss told those that didn't already know that his little 5-year old has an inoperable brain tumor. He and I have been trading doctor/insurance tips, very helpful. I told the group that I'd be out sometime in the near future for the surgery (whatever I get), and one of the guys was really interested - turns out he has a brother with a bad lumbar disk that needs treatment, so he's really interested in the ADR stuff. Good to know that I can be helpful to someone like that.

I hear from Germany... still no word from Doc #1

The questions I submitted to neurosurgeon #1 last Monday are still unanswered - I have to contact the doctor's admin to see if he's read them yet (in all fairness, she did say that she wouldn't be able to give them to him until Thursday).

Interestingly, I heard from Dr. Fenk-Mayer, Dr. Bertagnoli's partner in Germany. She pretty much said what my doctors have said - this is important, and should be operated on promptly, the sooner the better. I mailed my MRIs off last Monday, so they should be getting them soon. The evaluation will cost 300 Euros (about $410). They're also wanting x-rays (for device sizing and placement) and bone-density measurements. I have no idea how to get those done without my local doctor ordering it. I'll give it a shot (perhaps neurosurgeon #2 will go along), but Fenk-Mayer said that these can be done in Germany a day or so before surgery.

It's funny, my stress level has gone way, way down since I've come close on deciding to go with Dr. Bertagnoli. It'll be interesting to see what neurosurgeons #1 and #2 have to say about him. He seems well respected in the medical community from what I can find on the Internet, but doctors always have their opinions. I'm hoping they don't get pissed because I'm considering going abroad for treatment.

Got my International Driving Permit today from AAA - basically, a big piece of paper that says you have a valid driver's license. A good thing to have if I go over there and rent a car. Since my stay will be less than three months, I don't need a visa, just my passport.

One of those days... continued

So, what are the other alternatives to fusion and laminaplasty? The Interne to the rescue

In Germany, they've done a ton of work with ADR. Stenum clinic seems to get a lot of PR, but there are several surgeons with really good reputations who routinely do multi-level ADRs. Dr. Rudi Bertagnoli in particular stands out - he's very active in the spinal community, and seems to have a good track record. He has a fellowship with Yale medical school - if Yale sends surgeons to train with him, that makes me feel pretty good about him.

The bad part of this? No insurance! This is totally not covered - all out of my own pocket. And, we're talking ~$40,000 here. If I hadn't just shelled out $20,000 for replacing all my windows this month, and another $5,000 for dealing with two fallen fir trees in last December's wind storm, I'd be happier.

But, really, this is my health we're talking about - and money shouldn't enter into it. Fortunately, due to skyrocketing real estate prices, I've got a ton of equity in my house, so I can raise the money in a couple of weeks if needed.

So the plan of action is several fold:

• First, I shot an email to my neurosurgeon with a bunch of follow-up questions.
• I've also set up an appointment for a second opinion with another surgeon at the OHSU Spine Clinic. Different hospital (they do ADR there), perhaps different opinions.
  
• I've also sent my MRIs and medical history off to Dr. Bertagnoli's office. Got an email back saying they're on holiday until August 15th.

I keep vacillating back and forth. While the laminaplasty originally sounded good, I'd like something that actually fixes things. Right now I'm leaning about 90% towards Dr. Bertagnoli, if he'll accept me. I've already talked with several patients of his, who've given me positive feedback. Checked airline reservations (between $900-1300 round trip), car rentals, international driving permits, etc, etc. Talked to my credit union about a home equity loan. Now I just have to wait to hear back from local neurosurgeon #1, local neurosurgeon #2, and the German neurosurgeon. If I needed to, I could get to Germany with two weeks notice.