Category: Pain

Garage Cleaning

We’ve lived in this house for 20 years, and it’s probably been 15 since the last time I gave the garage a good cleaning. So today I finally steeled myself to do it. It wasn’t easy, because I’m a master of finding better things to do – it’s been a week or so since the last time i paddled, and I’ve been casting longing looks at my V8 Pro all this time. But after literally years of false starts, I decided today I was going to do one side of the garage. Today is garbage day, so I decided I’d start on the easier side and just go until I tired out or the garbage tote was full, which ever came first. I got one bay almost completely done. I found a lot to throw away, as well as a few things related to my old Thunderbolt kayak that I’d like to find somebody to give to.

It was a lot of effort, especially in regard to my chronic pains and the heat and humidity. But I made the effort and I’m happy with what I accomplished. Two more days like this and it should be done. I’m not sure if I should wait until the next garbage day so I can throw stuff away immediately, or if I should just build a garbage pile and get it done while I’m still happy about what I’ve done so far.

My sweat soaked shirt

Well, that’s different

I haven’t written about my pain stuff in a while. I think last time was just after my first shot at PRP. At the time, I didn’t know it wasn’t going to work. Neither did the second PRP shot. At that time, I latched onto what was possibly my last shot – the guy who’d done several corticosteroid shots in me (none of which helped) in my sciatic nerve (both down in the hip, and then again where it exits the spine), and in my ischial bursa, and also implanted pain stimulator electrodes in my spine had told me that I needed my ischial bursa removed. The only problem was that nobody does it – I talked to doctors all over the place, including New York City and Kansas City.

By luck, somebody in r/ChronicPain in reddit responded to an old post of mine to tell me that this doctor in Houston did an ischial bursectomy on him, and it had helped him immensely. This set off a long process of trying to get that doctor’s opinion on whether I need an ischial bursectomy and whether he’d do one on me without multiple trips to Houston. The doctor’s office sent me a very detailed protocol for the MRI that they wanted. My primary care doctor didn’t want to order it, because she didn’t really know how to get the local MRI centers to follow the protocol. However, my pain doctor talked to a couple of doctors of radiology and got a way to get my protocol done.

When I got to the MRI appointment, I didn’t get to see a doctor, but the radiology technician was really into this challenge. She’d even read the journal article that the protocol refers to. The MRI process was a bit longer than usual. The amusing thing was that the next day they called me and the radiology doctor wanted me to come back the next day so they could do their usual protocol and compare it to the Houston doctor’s protocol at no charge to me (or my insurance). I had nothing better to do, and I’m interested in more data.

I don’t have the tools to look at the actual MRI scans, but the second MRI got the usual radiologists summary. And for somebody hoping for a possible path to a cure, it was mostly terrible news. They said there was no evidence of ischial bursitis, and only mild hamstring tendonopathy. However, there was a bunch of stuff going on in the hip joint itself, most of which was highly technical and hard to interpret.

I had to jump through some hoops to get imagery to the Houston doctor, and I waited for their response. And their response was a complete surprise. They think I need a hip replacement! They said I have too much arthritis to be a candidate for arthroscopic surgery.

Well, the good news is that there isn’t a shortage of doctors here in Rochester who can do a hip replacement. Funny, all this time I’ve ignored the pain in my hips, because it seemed less important than the pain in my sit bone area. The pain in my hips didn’t stop me from paddling or walking, it was just a constant thing like my knee pain.

PRP

Today was one of a long excruciating series of attempts to find some relief for my “butt pain”. I’ve had diagnoses like sciatic nerve demylenization, high hamstring tendenosis, ischial bursitis, performis syndrome and probably some other things I’m forgetting. I’ve had cortisone injected in my spine (where the sciatic nerve comes out), in my ischial bursa and in my hamstring, I’ve had physical therapy for all those diagnoses, and I’ve even had a electrodes implanted in my spine for a pain stimulator. So far nothing has worked.

The last doctor who worked on me suggested I look into getting an ischial bursectomy, but after calling 7 or 8 doctors in places like Texas, Kansas and New York City, all of whom whose websites said they do it, I got told over and over again that they don’t actually do it. I actually found one who said they do it and they booked me in for an appointment. And yeah, the front office person who booked me in had actually checked with another staff member to make sure they do it. This was in a fancy clinic in New York City just a block from Central Park. We had to fly down there and back. And when we finally saw the doctor, he said he doesn’t actually do that procedure, but he said he was going to suggest something less drastic. I think I surprised him when I asked him if he meant PRP (Platelet Rich Plasma?) or Prolotherapy. He was going to recommend PRP, and he confirmed the feeling I’d gotten from my research that while both are not FDA approved, many people find PRP helpful, whereas prolotherapy is pretty dubious.

The best thing about PRP is that I could have it done here in Rochester, and didn’t have to fly somewhere. Also, while it took a few weeks to get in to see the doctor who could do it (who was also the guy who’d shot cortisone in my hamstring), I got the appointment to have the procedure a week later (ie today).

So I had it today. First they took a bunch of blood – they tried to take 90ml but my blood kept coagulating so they had to stop at 78ml, after jabbing those giant 17G needles in me 3 times. They centrifuge it, and the centrifuge spits out a bag with plasma and platelets,and another bag of red blood cells. Sadly, they throw out the red blood cells, so there goes some more of my left over aerobic fitness.

Then it’s into the OR where they put you face down on a table and inject some lidocaine and then the platelets right into the hamstring. The lidocaine hurts like hell getting the needle in, then it feels just semi unpleasant as they inject it, and then it feels a different type of unpleasant when they inject the plasma.

Then it’s all over, until a few hours later when the lidocaine wears off and you realize your entire leg hurts like hell all along the hamstring, and you can’t take anything except Tylenol because the whole point of the procedure is to cause inflammation to start the healing process, so you can’t take any anti-inflammatory.

I’m really banking on this working, because my only remaining option that I know of after this is to keep searching for a doctor to do an ischial bursectomy. I found a video on YouTube that showed a doctor actually performing one of those, so maybe I’ll try to track that doctor down.

Pain sucks, fighting for treatment sucks harder, and the mental toll of this whole drawn out process is enormous. It’s only taking a pretty heavy dose of an anti-depressant and the love of family that gets me through the day and keeps me from giving up.

Cross country skiing

So three winters ago, I decided to see if I could possibly get back into cross country skiing without buggering my knees up too much. For most of that first winter, I skied at Cumming Nature Center, which is about the nearest place that had rental equipment. I had just come off a really great year of kayak racing, except for the hip pain that was making it increasingly untenable to keep paddling, and I pretty much did no paddling after August except for the Long Lake and Seneca Monster races.

So I was still pretty fit when I took up skiing, and I really enjoyed skiing around Cumming which had a great network of trails and a variety of conditions. Also their rental equipment was pretty great. The only drawback was the driving distance. I usually arrived at Cumming just as the sitting pain was becoming unbearable. On the way home I’d have to stop at least once and walk around and stretch a bit to alleviate the hip pain.

After four or five times renting, I decided to buy some equipment, a mixture of stuff bought on-line and my friend Dan’s old skis. Dan introduced me to something called “Start Tape”, that was like a 1-wax system that you applied like a tape to the wax zone of your skis. I don’t know if it’s because the wax pockets are so much better engineered that when i was skiing in the 70s and 80s or just that my expectations were lower, but I’ve continued to use the Start Tape.

Buying also meant I could ski closer to home at Durand-Eastman park, which had a mixture of groomed trails and skied in trails, and wasn’t a bad place to ski as long as the weather held. I still went back to Cumming and a few times to Bristol when snow was scarce on the ground because Bristol makes snow. It’s only a 1km or so loop, but it’s consistent snow when everybody else is ice and puddles. And when the snow is good, they have an additional loop that’s about 1.8km.

Only drawback of Bristol is that most of their customer base appears to be skate skiers, so they’re not very consistent about putting in grooves. Due to the knee problems that caused me to quit skiing the first time in the 1980s, I don’t do skate skiing any more, and I really want those grooves.

By the end of that first winter, I was tolerating the length of the drive better, and I was skiing as much as 9 or 10 kilometers at a time. A far cry from when I was training for the Canadian Ski Marathon and loppers, but I sure remembered why back when I was doing everything (skiing, orienteering, backpacking, canoeing, etc), cross country skiing was my favourite. If you don’t believe me, look at my domain name, xcski.com.

Second winter came along, and this time I did almost no paddling during the summer because of the hip pain problems. And it turned out to be a complete wipe-out for snow – the only place I skied was at Bristol, around and around that 1km loop. I think I made it up to 7 or 8 kilometers at a time. The driving wasn’t bothering me as much, and I’d often go 3 times a week. Still felt great to ski. I often felt like I was slower than the slowest skate skier, but faster than the fastest other classic skier. I took my drone a few times to get footage of myself skiing using “Follow Me” mode which was pretty cool.

It’s now the third winter. I did get out a very few times in the kayak this summer, but only for an hour or so each time. But the fitness is way, way worse this year. Most of the skiing has been at Bristol, because we haven’t had much good snow. Cumming hasn’t opened for more than a day here or there, but not fully groomed, and I managed Durand once before it all melted away. And I’m slow, just horribly horribly slow. I get one decent loop which takes about 1.5 times as long as it took me two years ago, and then the rest of it is ski for a bit, catch my breath for a bit. I’m up to 3 loops and a bit of this out and back trail called Halle-Bopp. Maybe 4 kilometers total. It’s sad. But if the winter lasts a bit longer, maybe I can add another loop or two by the end.

Except I’ve got a problem. I feel like I shouldn’t even write about this in public, because people are going to tell me to stop skiing. The problem is that my knees are acting up. My right knee especially. For a day or so after I ski, I get a terrible stabbing pain when walking up and down stairs, and sometimes even when walking on the flat. I’ve been grinning and bearing it mostly because I don’t want to give up skiing, but I’m extremely concerned.

More ranting about pain, I’m afraid

So to follow on from The current state of pain, here’s where I stand now. I’ve been paddling for about an hour every 2nd or 3rd day. I’m not very fast, and the thermarest pad I’m using to protect my hip/butt makes me very unstable. I tried biking a few times and after the first one I felt great but after the second my butt was killing me for several days afterwards, so I probably won’t be doing that again. Too bad, because Towpath Bike finally got my gear indexing set up perfectly – it’s smoother shifting that when it was brand new.

Knees

Not much change here. I think I’m getting the “stabbing pain” more frequently, especially after paddling.

Ischial Tuberoscopy Area (aka “Butt pain”)

It got good enough that I was actually able to stand a trip up to Canada, by sitting in the passenger seat with the “sciatica pain” cushion and the seat reclined a lot to keep the weight off my butt. Unfortunately I tried cycling twice and now it feels pretty much the worst it’s ever been. Hopefully it will abate over the next few weeks again.

It’s very hard to remain upbeat about this pain. It’s still restricting my activities and enjoyment of life, and OTC Aleve and Tylenol aren’t really doing much. If I forget to take it for a couple of days, I notice the pain has gone from merely nearly unbearable to completely unbearable.

I really like my new primary care physician, but she seems to have seized upon the last conclusion from the doctor who did the pain stimulator implant test who suggested I should try the Mayo Clinic or the Cleveland Clinic. That seems like a real expensive roll of the dice. I’d have to spend some unknown amount of time away from home, and I don’t know how much or how little insurance would cover.

Tooth/Jaw Pain and Headaches

The tooth/jaw pain I reported last time has been pretty much cleared up. The dentist decided the antibiotic he was giving me wasn’t working, so he switched to something stronger. Almost immediately I got a big swelling on my jaw below a tooth two down from the one he’d started the root canal on. I got that tooth removed a day or two later. After the infection died down and I got the stitches out, the root canal was finished and in a few months they’ll implant a socket where the tooth was removed so I can get a replacement.

Meanwhile, in a quest to see why I’m having all these headaches, I got an MRI of my head which showed a very bright thing in one of my sinuses. It looked scary, but when I eventually got an appointment with an ENT he said it was just a mucosal accumulation cyst, and it was nothing to worry about. About 30-40% of people have one of these and most never know it.

But long before I got to see the ENT, the headaches went away on their own. It seemed to coincide with the progress of the antibiotics. They tell me it’s very rare for infection in the lower jaw to cause headaches, but it sure seems like it did.

Diabetes?

While I was dealing with all these other things, I got a blood test that showed that my A1C had gone from 5.7 last year to 10.7 this year. I’d had this year’s blood test done at a local blood lab that I’d only just discovered was near me and I was finding it hard to believe my A1C had gone so completely to hell in just a year, so I asked for a second test which I had done at the same lab I used last year. This time it was 11.1. That’s full blown diabetes. My doctor put me on insulin – at first slow acting stuff before bed, and later I was also put on fast acting stuff before each meal. What a pain.

When I got my gall bladder out they warned me that it might take a while for my digestion to accommodate the lack of a gall bladder. I wonder if that’s what caused the diabetes? I hope so, because it means it might go away again.

Also, I started noticing that I was rubbing my feet against each other, and it seemed like I was doing it because my feet were always freezing cold and the skin on my feet are always tingling. My doctor did some simple tests and says it’s not due to lack of circulation or lack of nerve sensitivity so it’s probably not due to the diabetes. But it’s still annoying.