New Xrays

Not much has changed over the last month. The bone bridge will probably consolidate by my next visit, which isn't for 6 months.

Test Socket

I've been laid up for the past few days with a pretty awesome bout of viral gastroenteritis, and I don't really feel like typing much at the moment. Nevertheless, I had my test socket fitting today, and I'm pretty excited about the prospect of ditching the crutches. It will definitely take some getting used to, and my leg will continue to get stronger as the bone bridge solidifies. For now, I've decided on the Fusion foot, from Ohio Willow Wood.

Cleared!

Surprising turn of events... I had my checkup on Wednesday, and I was actually cleared for prosthetics! The doctor applied a decent amount of force with the palm of his hand to the end of my leg, and I tolerated it just fine. It wasn't uncomfortable or painful, and nothing snapped... so I guess that's a good sign.

I won't delete my earlier post. I think Ertl patients need to realize that you will get frustrated, you will hit a low, and you will rethink the decision. I have yet to see whether my outcome will leave me better off, but things are certainly starting to look better.

More x-rays coming soon.

9 Weeks

Tomorrow is the 9 week mark. Another check-up in Cleveland next week. Not expecting anything except, "Come back in 3 or 4 weeks." Probably shouldn't even waste my time going there, but I'm a sucker.

X-Ray Time

Here they are:

Ertl = waste of time

To anyone seriously considering this surgery: don't do it. If you're doing all right, you're doing much better than you think. Don't do what I did, and believe the surgeon who told you his technique heals faster and stronger than the "true" Ertl procedure. I still had stitches at 5 weeks; a true Ertl has stitches for 10 days. A true Ertl is walking within 4 weeks.

I'm now 8 weeks post-op, and I still don't have "significant bony healing" (their words.) So, it'll be another 4 weeks before I can think about a prosthesis. But don't worry, when those 4 weeks are up, and I've slipped and fallen on the ice too many times to count, then it'll just be another 6 weeks. In other words, I'll most likely never walk again. All because I was greedy, and wanted to be able to run. This should be an awesome Christmas.

If, by some miracle, I ever do walk again, I'll be too fat to walk more than 10 feet without having a heart attack. For those who don't know, spending every waking second on crutches is probably the worst possible way to go through life. Drop something? That's a 30-second penalty, and hopefully you don't lose your balance. Need to carry coffee across the room? Better take your time, and don't spill a drop. Oops, you did spill a drop, now that's a 2-minute penalty as you try to wipe it up without falling over. Need to carry anything at all up or down the stairs? Good luck.

When I'm not sitting at my desk all day, I'm sitting at home. Because I no longer have any desire to walk around. Thus, I'm probably gaining about a pound a day. That's pretty easy to do when all you do is sit and eat all day.

What if I just never go back for any more follow-ups?

Week 7

Thanksgiving will be the 7 week mark. Nothing really significant has happened lately, although the trip to Cleveland was a little disappointing. Dr Clair would like me to return in mid-December for another check-up, and only then can I start thinking about prosthetics. The problem is that I know that no one will be available during the Christmas holidays, which means I realistically won't have a leg until some time in January. I really didn't want to be contending with snow while on crutches, but it looks like that's where I'm headed.

I did have some x-rays taken in Cleveland, and I'll post them if I can obtain copies. If the bone bridge shows a callus formation, that should be the trigger for prosthetic fitting. Of course the bone bridge won't reach full strength for probably a year, but as long as the initial fusion has occurred, that's all that's important.

This goes against doctor's orders, but I made an appointment with my prosthetist for next Tuesday, 11/29, to have a plaster impression made. By the time the test socket is ready, hopefully I will have had my next check-up in Cleveland. And then, hopefully the real prosthesis could be ready before Christmas. That would be just over 11 weeks, which certainly should be adequate time for healing. Throwing away these crutches would be an excellent Christmas present.

Buckeye Bound

Off to Cleveland tomorrow morning, and stitches come out on Monday. Corrine almost convinced me to snip a few of the really painful stitches that are cutting deep into the skin, but I decided just to leave them alone. The incision is completely healed now, so the stitches truly are doing more harm than good.

Even though my thigh has atrophied down to nothing, my lower leg actually does feel quite strong. I can push with my palm against the end, and I have absolutely no sensitivity. This probably doesn't sound particularly remarkable, but I could never do that with my old stump. My old stump was basically just a big nerve ending.

I hope they clear me for prosthetics at my appointment on Monday. I don't know how I was able to handle crutches for almost 9 months back in 1995. I am really quite fed up with hobbling around on one foot. I also can't stand parking in handicapped spots. I've had a handicapped placard for a while, but just ask Corrine: I'll park half a mile away, rather than use handicapped parking. I never limped, and my prosthesis basically looked like an ordinary leg, so I assumed that everyone thought I was a fraud when I parked in a handicapped spot. I distinctly remember one time we visited the Kinzua viaduct. I was actually in some pain that day, and the lot was full, so I asked the parking attendant to direct us to the handicapped spots. She glared at us, assuming that a male in his 20s couldn't possibly need handicapped parking. As Corrine and I later walked past her, I heard her say, "Oh, there goes the handicapped couple!" I definitely stopped dead in my tracks, and thought about taking off my leg and waving it in her face. I opted for decorum, and I let it go.

I work with an amazing troop at Lockheed. Engineers have an undeserved reputation for being socially inept, maybe even antisocial. Nothing could be further from the truth. Every single person I work with has been supportive beyond my expectations. I guess that's why I returned to a full-time schedule so quickly.

When I was in high school, after I was fully recovered from my accident, there was a kid from Erie who managed to get his bicycle entangled with a train, and his leg was severed below the knee. (This was back when West 19th street had railroad tracks literally right down the middle. Yes, mile-long freight trains instead of streetcars.) I decided that I really needed to find this kid, and assure him that everything would be fine. I found out where he was taken, and I visited him in the hospital. A few days after that, one of the nuns at my school came to me and suggested that I go visit this kid in the hospital.... and I explained that I had already done so. After I'm fully recovered from this, I hope I can somehow promote the Ertl procedure. There's a lot of information on the internet, if you're willing to look, but it seems as though a lot of the medical establishment isn't convinced that it's worth all the extra hassle.

My Mentor

I wanted to give some recognition to the guy who basically singlehandedly inspired me to go through with this procedure: Earl Barnes. Here's his glamour shot (I hope he doesn't mind!)

Earl basically was in the same situation as myself. He lost his foot in an accident (his was a motorcycle, mine was a train) and lived with an amputation at the ankle for about 15 years. He finally decided that enough was enough, and went through with the Ertl BK. Obviously, he's a tremendous athlete now. But he's also a firefighter and rescue diver, so he routinely carries 80 pounds of equipment (or another human being.) So, this is all further testimony to the credibility of this procedure.

Out, damned stitches

Counting the days. minutes, and seconds until these stitches come out. I'm putting the odds of them actually coming out at 2:1. I surfed the entire Internet, from start to finish, and found no other cases of stitches being in this long. I am making medical history, folks.

I started to think that I would get used to them, but that's preposterous. For the last month, my body has been trying to tell me that I have 25 pieces of nylon sewn deep into the skin. I'm pretty sure that's something your body doesn't ever adjust to.

Pictures

Warning! Skip this post if you do not like seeing stitches. I'm posting this as medical information for anyone who wants to see what an incision looks like after 4 weeks. Other than one stubborn spot, I think mine looks good.

And here is the gallery: http://flickr.com/gp/jtocwru/438xog/

If your reaction is, "Wow, that doesn't look good at all," then (1) I should see if I can find the pictures taken right after the surgery, and (2) my old stump looked pretty bad, yet I was able to do just about anything except run. Before, I basically had skin over bone at the end, whereas now I have a thick cushion of muscle and connective tissue over a bone graft. Tim 2.0 should be bomb proof -- check back in a few months.

2 more weeks of stitches

I'm starting to feel like a full-fledged rock star now. I've got Percocet for pain, and melatonin to counteract the insomnia from Percocet. Fish oil, multivitamin, B100 complex, 1000 mg of C, 5000 IU of D3, zinc, and magnesium supplements daily. One of these things is bound to work.

The incision looks incredibly good, even though there's still a stubborn spot that continues to drain and remains sore. It'll be interesting to see whether they can get all of the sutures out, as a lot of them have disappeared under the skin. I'm convinced that the problematic suture might be through a nerve, and that's why it has been painful for nearly 4 weeks. Everything else has been healing nicely, and I don't have any tender areas. I really don't want to mess around with nerve damage, so I hope I'm wrong. It's just odd that touching that one particular suture is like a shock, and makes me think neuropathy.

Apparently, we truly don't make anything in this country any more. I noticed that my rolls of gauze are "made and sterilized in China." Seriously, is it that much more economical to ship cotton 10,000 miles, make gauze out of it, and ship it 10,000 miles back to the US?

CIGNA apparently still does not have the necessary documentation to approve an intermittent leave. It sounds like the Cleveland Clinic told them I wouldn't go back to work full time until after Nov 14, but I wanted them to say that I would be intermittent until then. If my doctor signs off on continuous leave until Nov 14, what's the problem with intermittent leave until then?

Spiffy Percocet side-effect du jour: nightmares

I've slept about 4 hours total since Saturday. Last night, the Percocet simply kept me wide awake all night. Tonight, I eventually drifted off to sleep, only to be jolted awake by vivid and truly frightening nightmares. Now I'm tired, but afraid to go back to sleep.

The Best Laid Plans

The idea behind an early October surgery was that I would not have to deal with snow while hobbling around on crutches. This appears to have been an invalid assumption.

Recently, I had been sleeping quite well. Until tonight. I woke up around 2am, and it's now almost 6am. I was in pain (same old incision soreness) so I took the prescription-strength ibuprofen and a percocet. That mostly took care of the pain, but I'm still wide awake. Since tomorrow isn't a work day, I seriously considered going for the oxycontin, and just completely checking out. I've been working hard at this, getting exercise and being extremely vigilant with the wound care, but I feel like I'm making no progress.

I'm not ready to say that I regret this, since I am only 3 weeks post-op. And, in theory, I should be better off in the long run. But these last few weeks have been no picnic, and someone less stubborn than myself would probably be in dire straits. I'm pretty sure that I'll continue to have some level of pain until the stitches come out in 2 weeks. Getting them out will probably be as much fun as a root canal, and I'm sure it'll be sore for some time after that.

It doesn't help that working with CIGNA and the Cleveland Clinic is like working with the DMV. CIGNA seems to be utterly unable to comprehend that I went back to work earlier than I had originally estimated. And the Cleveland Clinic never responds to my emails any more. I requested a transition to an intermittent leave, so that I can basically work whenever I'm feeling up to it. My employer is completely fine with that, but I apparently blew CIGNA's mind with that one. I understand that these people need to have all sorts of documentation in order to prevent fraudulent claims, but I think there should be an express lane for someone like me.

My wife taught me never to complain exclusively. Always think of at least one thing you're thankful for. Well, the cat (Hiro) is back. Despite his walking on me at various times during the night, it's nice having him around. I have also established a dialogue with a professor at Clarkson University who is engaged in bionics research. Apparently he is very keen on getting me into his lab to help them develop terrain-adaptive ankles. As both a software engineer and a BK amputee, this sort of thing is fascinating to me. (Although, honestly, the reason there hasn't been much energy spent on developing BK bionics is because the existing carbon-fiber prosthetics are so good. Unlike losing a hand, which is extremely disruptive, a BKA is generally considered not to be particularly disabling. Unless the only parking spot available is a handicapped spot -- then I consider it to be very disabling!!!)

I am also grateful to my wife for putting up with this whole ordeal, and for not allowing me to sit on the couch and eat bon bons all day.

I guess I should also mention that I'm grateful for insurance. See my previous post. I cannot imagine facing a bill like that without insurance. I know it looks like that's my situation, but actually the claim is under review, and my out-of-pocket expense should be considerably less than what's shown.

Dang.

Three Weeks!

Tomorrow (Thursday) is the 3-week mark. Then, it's just a little over 2 weeks until the stitches come out. I don't know if the incision needs to be completely healed before they can be removed, and at this point I really don't care. I still have a few areas along the incision that continue to drain (not much at all, but enough so that the gauze soaks it up, dries, and then becomes stuck to the wound.) This is the source of my pain, and it warrants a percocet. Hopefully removing the stitches will eliminate this pain.

In any case, I may have found a solution. By first laying down a thin layer of bacitracin ointment, then Adaptic (a petroleum-impregnated dressing specifically meant to be non-adhering) and then covering all of that with gauze, I seem to be getting some relief. I'm a bit concerned that these areas haven't shown any signs of progress over the last week, but maybe I have unrealistic expectations. Maybe keeping the incision moist and covered is actually prolonging the healing process, although I always believed that wounds heal faster when they're kept moist.

Day 18

I'm glad I didn't throw away the percocet, after all. I have very localized pain coming from the medial aspect of the incision. I don't know what the problem is, but it's been fairly consistent over the last several days. I'm pretty sure I have excellent nutrition, I'm washing the incision and changing the gauze every day, and I'm applying bacitracin ointment. I don't necessarily care if the incision takes a long time to heal, I just wish it would do so without throbbing pain. I don't understand the point of this pain -- what is my body trying to tell me? It's not like I'm going to forget that my leg was sawed off. Maybe it's just mad that I did that, and this is revenge.

I guess I should have stayed home an extra week before going back to work.

I ran this by my surgeon, but he thinks it sounds pretty typical.

Time to celebrate my 32nd birthday with percocet!

Back to Work

2 weeks + 1 day post-operative, and I'm cleared to return to work full time on Monday, my birthday.

Also cleared to shower without entombing my leg in plastic, which should make that whole process easier.

CIGNA = clowns

My employer uses CIGNA as the FMLA/disability approver, and WOW do these people FAIL at their jobs. Today, CIGNA told me that they have received nothing from me or the Cleveland Clinic. This, despite the fact that I sent them everything a solid month ago via US Mail. The nurse from the Cleveland Clinic also said she had sent everything well before my surgery.

Today, I told the CIGNA rep that I had faxed her another form, and she pointed out that I was using the wrong fax number. I said, "Well, I'm using the fax number that this form says to use." She actually copped an attitude, and said, "Well, that's an old number, and I don't know where that goes." Because someone who just had his leg hacked off deserves attitude over something as inane as this.

So, the Cleveland Clinic probably faxed everything right into outer space, since CIGNA uses outdated forms. I told the CIGNA rep that the Cleveland Clinic probably faxed everything to the old number, and she advised me to get in touch with the Cleveland Clinic and straighten it all out. Seriously? You guys screw up, and the onus is on me? It still baffles me that they never received the forms I mailed them. Undoubtedly the mailing address they provide on the forms is invalid. What an unprofessional and disorganized outfit.

This is really terrific that I've got to coordinate all of this stuff. What exactly are these people being paid to do, besides make my recovery as exasperating as possible?

Also, who doesn't use email to conduct business these days? Apparently, CIGNA. I asked the rep if she had an email address, so I could more easily keep in touch. She said, "I do, but I don't give it out." Great. Thanks for that.

The other annoying thing is that CIGNA reps have extensions, but there's no way to actually contact them at their extension. The automated phone system will only transfer you to a rep of its choosing. Then, I have to say, "Uh, could you transfer me to this extension?" Seems a little amateurish to me.

IPOP

Here is a picture of my RRD (rigid removable dressing) which is also known as an IPOP (immediate post-operative prosthesis.) It's not a prosthesis, so RRD is more accurate. Its purpose is to keep the knee extended (thereby preventing flexor contracture of the hamstring) and to protect the leg as it heals. If I catch a crutch and bite it, this should protect the stump from injury.



Dressing changes are now a breeze, and the incision looks very good. A blister that was worrying me (and was present after the first dressing change in the hospital) has finally cleared up. Basically, it's now just a waiting game until Nov 14, when the sutures come out.

In the meantime, maybe it's not too early to start looking at prosthetic options. I wasn't aware that a BK amputee was on Survivor, and he used the Freedom Innovations Renegade foot:

This is probably ridiculously expensive, but it sounds like it can handle anything.

Random Thought

Next time I see a self-absorbed male cyclist with shaved legs, I'm going to go up to him and say, "I shaved my leg once, too..... RIGHT BEFORE THEY CUT IT OFF."

Back in NY

We are back in NY, and I'm attempting to go completely off oxycodone. We've been steadily increasing the intervals between doses, and I'm up to 24+ hours now since my last dose. I have no pain at all, but I'm still taking ibuprofen for the anti-inflammatory effect.

Off to get some exercise, and watch Corrine shop for groceries.

One Week

One week ago at this time, I was prepping for surgery.

I forgot to mention that when I was sitting in the pre-op staging area, I overheard two nurses talking about a surgery on the previous day that apparently ran into some major complications. They were talking about blood having to be mopped up, and hearing "tone" twice. I'm guessing "tone" is the alarm from the vital signs monitor. In any case, this is not something I wanted to hear moments before major surgery.

Healing is a slow process at the macro level, but it's remarkably fast at the cellular level. After only one week, my incision looks a lot less angry. There is virtually no drainage, and I have far less soreness than even a couple of days ago. The sutures won't come out for another month, but I'm feeling very confident about the progress already.

We are slowly extending the time intervals between my oxycodone doses -- I'd like to get off of it as soon as possible. I can't say for certain that I'd be fine without oxy, but I think the Motrin is helping me more.

I picked up a pair of weightlifting gloves to spare my palms from the abuse of crutches. The plan for today is to walk around at Presque Isle -- fresh air never hurt anybody.

Day 5

I was sent home with one-month supplies of extended-release oxycodone, percocet, and Motrin, but I really think I'd be OK with just the ibuprofen at this point. The pain is really not bad at all. Donning the shrinker sock continues to be a chore, but today wasn't nearly as bad as the first time.

I had a legitimate shower today, which was extremely refreshing.

Corrine and I walked 0.4 miles around the neighborhood, which is about as much as I can do comfortably at this point. We walked 0.2 miles yesterday. Part of the problem is that I don't have "crutch palms" yet, so they're extremely tender & on the verge of forming blisters. They'll toughen up, along with the rest of me.

Daily, I'm taking 1360 mg of fish oil, 5000 IU of vitamin D, plus my usual multivitamin. I'm usually a camel when it comes to water, but I've been drinking a lot lately. I blame the oxycodone for that (and I blame it for lots of other unpleasant side-effects.)

I had some questions that I emailed to Dr Clair this afternoon. He wound up giving me his personal cell phone number, and offering to work me into his schedule tomorrow if I thought it would help (but I declined.) I am continually impressed by his professionalism and dedication to the patient.

Visit from the prosthetist

The prosthetist from Hanger stopped by this evening, ostensibly to measure me for my leg brace. What I wasn't counting on was being placed into orbit by the pain from rolling on a shrinker sock. I was relaxed and settled in for the night, and he knocked on the door at about 8:45pm. We had a nice discussion about how I will be so much better off with the Ertl, and how Dr. Clair is probably the best Ertl surgeon in the country. That was very reassuring.

Then he unwrapped the shrinker sock, and started to slide that on. I could feel my sutured-together bones flexing, and the sutures being tugged as that stupid thing went on. Hopefully that doesn't have to happen again. Between this and the physical therapy, I don't see how all this abuse is going to promote healing. I wish there weren't so many people involved in rehab, but I guess that's Modern Medicine™ for you. Hopefully I'll see Dr. Clair tomorrow before being discharged (if discharge is still the plan for tomorrow.)

Pain Update

No longer needing IV fentanyl or morphine! Down to just Motrin and Oxycodone. Discharge tomorrow is possible, but Monday is probably more realistic.

Done!

I went into surgery around 3:30pm yesterday, and my understanding is that the procedure was relatively quick (no more than 2 hours.) I vaguely remember being wheeled back to my room, where I have been recovering ever since.

I created a minor stir in the OR when I told the nurse anesthetist that I did NOT want to do the epidural, after all. They recommended that I have it, but they said ultimately it's my decision. I insisted that I would be able to manage the post-op pain with medication. Maybe I would have been better off, but I just don't like the idea of needles going into my spine.

Dr Clair said he's very happy with the procedure. He was able to suture a good piece of bone in place, and he said I have excellent blood supply. The dressing is very bulky, but I'd say he removed about 6 inches. If this heals properly, I should have a far more functional limb than before.

For pain, I'm taking oxycodone, percocet, and intravenous fentanyl. Fentanyl is great stuff, but it makes me completely useless and loopy. Overall, my pain is not excruciating, but I think I've got several days of persistent pain ahead.

The good news is I've got a single room, with a nice big TV!

Too tired to say much more for today. There's a chance I might be discharged on Sunday, but I think it'll most likely be Monday.

I can has phlebotomy?

"I'm a student, and I'll be doing your blood work."

That actually didn't concern me. I figured a rookie at the Cleveland Clinic would be pretty good. However, two pieces of evidence suggest otherwise:

(1) I'm a male, and she asked me if I have ever been pregnant (skipping over the box that said "N/A patient is male")

(2) I wound up with a nice, big bruise

The procedure

Here is the actual surgical procedure: http://www.ampsurg.org/html/bb1/bb1printsegmented.html


This is supposedly considerably more complicated than a standard BK amputation, but it sounds like the really important stuff (nerve ligation and myodesis) is common to standard and Ertl-esque TTA procedures.

One Week To Go

I decided to blog about my Ertl revision because there really is not that much information for prospective patients. The only other bona fide blog I came across is over at codeverity.com

Basically, what distinguishes the Ertl procedure from traditional below-knee amputations is the "bone bridge" that secures the tibia and fibula (i.e., the leg bones below the knee) together.

I guess the one thing I should settle right away is that I'm aware that the "true" Ertl procedure does not involve a fibular strut (i.e., a piece of the fibula that is sutured or screwed in place to form the bone bridge.) Instead, a periosteal sachet filled with a slurry of bone chips is fashioned between the tibia and fibula. This eventually forms solid bone. The fibular strut method certainly heals faster, but whether one approach is "better" than another is purely anecdotal, in my opinion. The studies I've read cannot state the clinical superiority of either method.

I decided to have my surgery at the Cleveland Clinic, under the care of Dr Dan Clair. I have family in Cleveland, and it's a great hospital, so it seems like the best option.

Lastly, why the revision? I'm currently what I would describe as a "very long below-knee amputee." I basically have the length of a Syme amputee, but I do not have a heel pad. In fact, a skin graft was required to achieve closure, so weight bearing was never really a possibilty. Thus, I have none of the benefits of a Syme (mainly the ability to ambulate without a prosthesis) and all of the difficulties of an extremely long limb. Actually, BK amputations in the distal third of the tibia are contraindicated because of a lack of soft tissue to cushion the bone. Also, because of my length, my prosthetic options are extremely limited. Shock absorption (which would help me considerably) is not an option, so I'm limited to zero-impact activities. Having a BK of "standard" length opens up a whole new world of prosthetic options. And having an Ertl revision opens up the possibility of a weight-bearing limb.