First set of post-op x-rays. Beautiful joint space! Seems the fixator is doing what its supposed to do. Disappointing, but developed slight infection. Seems more of a skin irritation to me. Not unusual with all these pins, but still disappointing. Had my first joint injection of Synovisc. I expected it to be painful. I didn't expect it to be the worst pain I've ever experienced. Poor nurse. Was standing too close to my good leg and he'll be speaking in soprano the rest of today. It's going to be difficult to prepare for the next two visits, knowing I'll be getting another injection each time. But I actually had to fight to get these administered, as the VA here does not approve, even though they were ordered by the Phoenix VA. I reminded myself that I had begged for this as I was turning purple and swearing like a sailor. My hope is that since the joint has been so collapsed for so long, as it adjusts to having space and some fluid, perhaps the pain won't be as bad next time. The trial results on injections in the ankle vary greatly. So, it's not a necessary part of the treatment. But my doctor in Phoenix does believe they help, and after fighting so hard for so long to get this procedure, I want to cooperate and do everything possible to assist in a successful outcome.
I'm feeling well enough to want to go out and about, like have dinner with friends. But I find it impossible to get comfortable anywhere but my recliner or bed. My recliner and my butt are becoming much too friendly, I'm afraid. The foot doesn't hurt, but there's just nowhere to put this hamster cage without putting pressure on the knee, or the hip, or the back. Riding in a car any distance is the same issue. The foot isn't happy on the floor for very long at a time. You cross your legs, your foot falls asleep. You put it on the dashboard, your hip falls asleep.
I traded in the speed racer knee scooter I had rented for a little old lady model furnished by the VA. At first it was disappointing. Can't get nearly the speed with the new model. But it has the advantage of folding up completely, is lighter weight, and turns in a much shorter radius. It's much more practical for a small living space, like my house, and I think my husband would be relieved if I quit taking off the baseboard molding every time I ventured to a different room. The knee scooter is an absolute must, I believe. Crutches would severely restrict my activities and my independence, not to mention my arms would have fallen off by now.
I tackle the issue of clothing this week. If I want to return to my job, even on a limited basis, next week, I need something to wear other than shorts or side snap sweats. So I'm using the sweats as a pattern for side snap pants. And of course, I'll need matching T-shirt footbags.
Tuesday, March 29, 2011
Tuesday, March 22, 2011
First Post-op Follow-up
Just returned from first post-up follow-up appointment with Anchorage VA. You realize how sadly compressed your life has become when you look forward to a doctor's appointment as an excuse to get out of the house.
Pin sites look healthy. I have to admit, I did "swoon" when they unwrapped this package for the first time. Watching on-line videos of someone else's leg is a bit different than seeing these big honking rods going through your own leg. But I am on blood thinners. That must be a contributing factor. I really can't be that much of a wimp.
I am convinced this was all designed by a couple of good 'ole boys in the garage one night after a six pack. It is quite the erector set.
Pain meds doing their job well. I'm able to start cutting back and often sleep through a dose. Sleeping quite well considering this additional appendage. Maddie the cat has become adept at curling herself into my lap without tweaking anything tender. Purr therapy must count for something in all this.
Picked up a knee scooter today. A bit painful to put weight on the tibia, but the tibia rods have been a bit tender the last day or so. Sure beats waggling about on crutches. I guess its either sore arms or sore leg. The scooter has a basket, so I can actually carry things from room to room. Does pretty well in my small house. I imagine the cat will be riding around in the basket in no time. I got up some impressive speed with it along the long tiled hallways at VA. All the old guys were jealous.
The side snap sweat pants worked great for appt today. Can't get anything else over it but shorts at this point. Also found that the foot bags I made out of men's T-shirts are working well to keep the foot covered, prevent damage to furniture, and keep the gawking to a minimum.
Seems like all I need to do now is rest and heal for another 3 weeks. Then we loosen the hinge on the frame and begin dorsi-flexion and weight bearing. I think I could get used to the mid-afternoon naps.
Pin sites look healthy. I have to admit, I did "swoon" when they unwrapped this package for the first time. Watching on-line videos of someone else's leg is a bit different than seeing these big honking rods going through your own leg. But I am on blood thinners. That must be a contributing factor. I really can't be that much of a wimp.
I am convinced this was all designed by a couple of good 'ole boys in the garage one night after a six pack. It is quite the erector set.
Pain meds doing their job well. I'm able to start cutting back and often sleep through a dose. Sleeping quite well considering this additional appendage. Maddie the cat has become adept at curling herself into my lap without tweaking anything tender. Purr therapy must count for something in all this.
Picked up a knee scooter today. A bit painful to put weight on the tibia, but the tibia rods have been a bit tender the last day or so. Sure beats waggling about on crutches. I guess its either sore arms or sore leg. The scooter has a basket, so I can actually carry things from room to room. Does pretty well in my small house. I imagine the cat will be riding around in the basket in no time. I got up some impressive speed with it along the long tiled hallways at VA. All the old guys were jealous.
The side snap sweat pants worked great for appt today. Can't get anything else over it but shorts at this point. Also found that the foot bags I made out of men's T-shirts are working well to keep the foot covered, prevent damage to furniture, and keep the gawking to a minimum.
Seems like all I need to do now is rest and heal for another 3 weeks. Then we loosen the hinge on the frame and begin dorsi-flexion and weight bearing. I think I could get used to the mid-afternoon naps.
Friday, March 18, 2011
24 hours post op
The hard part's over and now begins the healing. A huge debt of gratitude to the Phoenix VA. Without exception, every staff member I dealt with (and it was considerable over 2 days of pre-op and op) was friendly, professional, efficient, and really seemed to care. Their system works beautifully and I felt well cared for at each stop.
My podiatrist is like a mad conductor in charge of an orchestra of cats. The podiatry clinic is nothing short of controlled chaos. But they make it happen and see an incredible number of patients.
Surgery went well. Doc was very pleased. So pleased, he cranked the frame up to 9mm distraction instead of the typical 5, just to be on the safe side. Anyone remember getting their braces adjusted? Had a bit of trouble in recovery, but felt considerably better once released and away from all the other sick people and their issues. Glad he allowed the day surgery option. Lots of pain initially. Several elephants sitting on my foot kind of pain. But pain meds are controlling it fairly well. He didn't do any clean-up or pin removal at this point. If he decides to do that, he'll do it when the frame is removed.
Crutches are the pits. Definitely made for 20 year olds, not 50 year olds. I'll be renting a knee walker when I return to Alaska. And I do believe I'll be able to fly home as planned. Might not be the most comfortable thing I've ever done, but its definitely doable.
No idea what this monster looks like. They wrap it all up in gauze and then cover it with a giant ACE bandage. Looks like I stepped into a cereal box and then taped it to my foot. Not supposed to unwrap the package until I see my doc in Anchorage for re-dressing. Cuts down on pin site infections that way.
Slept fitfully, but did sleep. Unlike most others I've chatted with, I was able to lay on my sides immediately. And surprisingly, bumping the frame doesn't seem to add to the pain. Mostly its just a deep ache in the joint, and then sharp, burning sensations in the heel area that come and go.
I started my healing meditations last night and am looking forward to resting and giving this all a chance to work now. It's much easier knowing what I have to deal with, what the pain level will be, and what I can and can't do. That unknown black hole stuff is scary.
My podiatrist is like a mad conductor in charge of an orchestra of cats. The podiatry clinic is nothing short of controlled chaos. But they make it happen and see an incredible number of patients.
Surgery went well. Doc was very pleased. So pleased, he cranked the frame up to 9mm distraction instead of the typical 5, just to be on the safe side. Anyone remember getting their braces adjusted? Had a bit of trouble in recovery, but felt considerably better once released and away from all the other sick people and their issues. Glad he allowed the day surgery option. Lots of pain initially. Several elephants sitting on my foot kind of pain. But pain meds are controlling it fairly well. He didn't do any clean-up or pin removal at this point. If he decides to do that, he'll do it when the frame is removed.
Crutches are the pits. Definitely made for 20 year olds, not 50 year olds. I'll be renting a knee walker when I return to Alaska. And I do believe I'll be able to fly home as planned. Might not be the most comfortable thing I've ever done, but its definitely doable.
No idea what this monster looks like. They wrap it all up in gauze and then cover it with a giant ACE bandage. Looks like I stepped into a cereal box and then taped it to my foot. Not supposed to unwrap the package until I see my doc in Anchorage for re-dressing. Cuts down on pin site infections that way.
Slept fitfully, but did sleep. Unlike most others I've chatted with, I was able to lay on my sides immediately. And surprisingly, bumping the frame doesn't seem to add to the pain. Mostly its just a deep ache in the joint, and then sharp, burning sensations in the heel area that come and go.
I started my healing meditations last night and am looking forward to resting and giving this all a chance to work now. It's much easier knowing what I have to deal with, what the pain level will be, and what I can and can't do. That unknown black hole stuff is scary.
Friday, March 4, 2011
One week until surgery
So, here I am, one week before surgery after a year of maneuvering. BTW, did I mention I live in Alaska and am having this done in Arizona? Just to add a little interest to the whole procedure. The VA agreed to pay my airfare to Seattle and back, since that's where their doctor offered treatment. Everything else not directly medical, including lodging and transportation, is on my dime. However, I didn't have to mortgage my house, and for that I'm grateful.
Over the past few weeks I've developed what I think is tendinitis, which is proving very painful and frustrating. We've also had weeks of high winds and very cold temperatures, which adds to the pain factor. I don't think I could walk around the block at this point. I can't walk without a brace on. My dorsiflexion is probably down to 5 degrees. That's important because you need 10 degrees to walk without a limp. Most steps feel like I'm walking on broken glass. Last year this time I journalled that most steps felt like I had a rock in my shoe, except the rock was internal. This past summer I really struggled to walk a mile, and uneven surfaces are murder. My husband says I'm like a bear now, I can't do inclines at all. Bumping the ankle or foot lightly on the floor mat of my car, or the door frame, causes excruciating pain and a couple of times I've had to put my head between my knees to keep from passing out. There just isn't much give in the poor thing at this point and something definitely has to change.
I've done a lot more Internet research and talked to a few more doctors. I'm feeling gut level positive about this whole plan. I've also checked out a couple of on-line blogs about external frames. It's been educational and provided info for more questions I might not have thought to ask. But I've also scared myself quite badly. I've come to the conclusion that the folks on those sites are up in the middle of the night pecking away because they're worst case scenarios and they still really need that on-line support. I believe the folks who've had good to average results are all off living their lives. So, be forewarned. They're interesting places to visit, but I think taking it all with a healthy dose of perspective is really important.
I feel as prepared as I can be. Because there are so few cases, and everyone has an individual experience, everything that happens after the actual surgery is a great black hole of unknowns. I do know that my doc plans to do the procedure arthroscopically, which is good because we'll avoid the previous scar tissue, healing will be faster, and the chance for infection less. Also, it will be considered day surgery and I can fly home 48 hours later. We'll see how that all works out. Since all we've done so far is e-mail, he won't really know how much housekeeping will be required until he actually gets in there. The plan is to wear the frame for 8 weeks, and then a walking boot for 8 weeks while the holes in the bone fill in. I'll be in an SBI Rad frame, which is designed specifically for arthritis patients, and does not have the dreaded midfoot wire that everyone complains is so painful. Their site has a great video that shows exactly how the frame is installed. I have to say, it really looks like something the neighbor guys came up with in their garage late one night.
I intellectually understand that I can't expect to judge results for at least a year, and that it may actually be more painful for awhile. We'll see how well I physically and mentally incorporate that knowledge when the time comes. I understand that pinsite infections are a concern. Otherwise, everything is pretty much up in the air. No one can tell if I'll be able to weight bear while in the frame, or able to tolerate motion. My plan is certainly to try to flex the ankle as much as I can to avoid it freezing up. We also have a series of joint injections planned, but since my local VA doesn't allow injections in the ankle, I don't yet know where we're doing those. I'm really hoping I don't have to jump on a plane to Phoenix every two weeks.
I'm concerned about returning to work. I'm concerned about the flight home. But mainly I'm just looking forward to waking up each morning knowing I'm doing something positive instead of just watching it and my quality of life deteriorate. I'm hoping the tendinitis and my back both enjoy the time off and heal. And that I don't run out of movies and books!
Over the past few weeks I've developed what I think is tendinitis, which is proving very painful and frustrating. We've also had weeks of high winds and very cold temperatures, which adds to the pain factor. I don't think I could walk around the block at this point. I can't walk without a brace on. My dorsiflexion is probably down to 5 degrees. That's important because you need 10 degrees to walk without a limp. Most steps feel like I'm walking on broken glass. Last year this time I journalled that most steps felt like I had a rock in my shoe, except the rock was internal. This past summer I really struggled to walk a mile, and uneven surfaces are murder. My husband says I'm like a bear now, I can't do inclines at all. Bumping the ankle or foot lightly on the floor mat of my car, or the door frame, causes excruciating pain and a couple of times I've had to put my head between my knees to keep from passing out. There just isn't much give in the poor thing at this point and something definitely has to change.
I've done a lot more Internet research and talked to a few more doctors. I'm feeling gut level positive about this whole plan. I've also checked out a couple of on-line blogs about external frames. It's been educational and provided info for more questions I might not have thought to ask. But I've also scared myself quite badly. I've come to the conclusion that the folks on those sites are up in the middle of the night pecking away because they're worst case scenarios and they still really need that on-line support. I believe the folks who've had good to average results are all off living their lives. So, be forewarned. They're interesting places to visit, but I think taking it all with a healthy dose of perspective is really important.
I feel as prepared as I can be. Because there are so few cases, and everyone has an individual experience, everything that happens after the actual surgery is a great black hole of unknowns. I do know that my doc plans to do the procedure arthroscopically, which is good because we'll avoid the previous scar tissue, healing will be faster, and the chance for infection less. Also, it will be considered day surgery and I can fly home 48 hours later. We'll see how that all works out. Since all we've done so far is e-mail, he won't really know how much housekeeping will be required until he actually gets in there. The plan is to wear the frame for 8 weeks, and then a walking boot for 8 weeks while the holes in the bone fill in. I'll be in an SBI Rad frame, which is designed specifically for arthritis patients, and does not have the dreaded midfoot wire that everyone complains is so painful. Their site has a great video that shows exactly how the frame is installed. I have to say, it really looks like something the neighbor guys came up with in their garage late one night.
I intellectually understand that I can't expect to judge results for at least a year, and that it may actually be more painful for awhile. We'll see how well I physically and mentally incorporate that knowledge when the time comes. I understand that pinsite infections are a concern. Otherwise, everything is pretty much up in the air. No one can tell if I'll be able to weight bear while in the frame, or able to tolerate motion. My plan is certainly to try to flex the ankle as much as I can to avoid it freezing up. We also have a series of joint injections planned, but since my local VA doesn't allow injections in the ankle, I don't yet know where we're doing those. I'm really hoping I don't have to jump on a plane to Phoenix every two weeks.
I'm concerned about returning to work. I'm concerned about the flight home. But mainly I'm just looking forward to waking up each morning knowing I'm doing something positive instead of just watching it and my quality of life deteriorate. I'm hoping the tendinitis and my back both enjoy the time off and heal. And that I don't run out of movies and books!
Introduction - Part II
I'll save you all the bureaucratic stuff. If you're a veteran and need encouragement, leave a contact in the comments section and I'll e-mail privately and try to share what worked and what didn't work for me.
The interesting bit started last year when I finally decided something had to be done. My VA orthopedist gave me an article about the latest ankle arthritis procedures, and the VA offered to send me to a podiatry specialist in Seattle. I didn't think much about the options at the time. Kind of figured the specialist would tell me all I needed to know. But then I started getting a funny feeling and decided to at least google all the weird procedural names. As time for my trip came nearer, I decided if I really wanted to make the best decision, I needed to see a specialist in each procedure. Naturally VA wouldn't pay for any of that, but hey, we're talking quality of life here. So I started researching doctors and found a specialist in allografts and a specialist in arthrodiastasis in San Diego. I also googled the guy in Seattle and found he mainly performed fusion (arthrodesis). So I called the two San Diego guys, figuring top notch specialists would never agree to see me without a referral or on such short notice. And both of them re-arranged their schedules to accommodate me!
I'm really glad I paid for the extra leg on the trip. I basically discovered that ankle replacements are still lagging far behind hips and knees technologically. I wasn't a good candidate. The allograft proved to be less than I had hoped. As described to me, it wasn't a permanent solution, tending to fail in about the same time as a replacement. I was really intrigued by the idea of the ankle distraction, or arthrodiastasis though.
For those of you unfamiliar with the option, there are a few good scholarly medical articles available online. Just google the term. Basically, it is a procedure using an external frame that manually pulls apart the joint, creating space. The doctors will be the first to admit they don't really understand why it works. But offloading the joint with the frame, and then doing some weight bearing creates a chemical reaction in the body that can produce new cartilage to cushion the joint. It's not the same cartilage you were born with but it seems to be effective in producing some degree of pain relief. Even if the joint space collapses when the frame is removed, patients can still experience pain relief, sometimes for many (10+) years.
It is not a permanent solution, but seems promising as an alternative to fusion for the purpose of preserving the joint, any available motion, and delaying more drastic procedures while we all hope that technology advances in the field.
I decided a year ago this was the procedure I wanted to try because it would preserve my original parts, would preserve my motion, and because my body has reacted well in the past to minimal medical assistance. I'm all for trying the least invasive thing first. I absolutely want to avoid a fusion at this point because even at 50, I'm considered "young" in the medical community, and because our bodies are meant to bend at the joints. If you fuse one, that stress has to go somewhere, and in most ankle fusions, that's into the knee, back and hip. I already have back/hip issues from limping over the past year.
My local VA knows nothing about the distraction procedure, but did agree I could have it instead of the fusion IF I could find a VA doctor who would perform it in a VA facility. Wow. Talk about a needle in a haystack. Again, I won't bore you with the bureaucracy, but after six months, I realized if anything was going to happen, I was going to have to make it happen. I started making copies of my X-rays and sending out letters. I spent hours on the Internet researching possible candidates. And within the VA system, there aren't many. Actually, nationwide there aren't all that many. Although the procedure has been in the US for at least 30 years, there just aren't many of us ankle arthritis patients around to practice on.
I was stunned to receive prompt, informative responses directly from some of the most experienced people in the field of podiatry. I've had some great e-mail and telephone consultations. About half the people I contacted didn't feel arthrodiastasis was a workable option, or hadn't had much experience with it, or didn't believe it had much benefit. The other half were willing to try it for me, and a few felt it was the exact right choice. And after six months of active investigation and contacting, only one VA doctor was experienced in the procedure and willing to do it for me!
Trust me when I tell you, you didn't want to be my friend or family member over the last year as I've battled to get to this point. It has been a very long, frustrating road to find this one needle in the haystack. But that's one of the main reasons I'm writing this blog. If I can save anyone else the aggravation, I'd really like to.
The interesting bit started last year when I finally decided something had to be done. My VA orthopedist gave me an article about the latest ankle arthritis procedures, and the VA offered to send me to a podiatry specialist in Seattle. I didn't think much about the options at the time. Kind of figured the specialist would tell me all I needed to know. But then I started getting a funny feeling and decided to at least google all the weird procedural names. As time for my trip came nearer, I decided if I really wanted to make the best decision, I needed to see a specialist in each procedure. Naturally VA wouldn't pay for any of that, but hey, we're talking quality of life here. So I started researching doctors and found a specialist in allografts and a specialist in arthrodiastasis in San Diego. I also googled the guy in Seattle and found he mainly performed fusion (arthrodesis). So I called the two San Diego guys, figuring top notch specialists would never agree to see me without a referral or on such short notice. And both of them re-arranged their schedules to accommodate me!
I'm really glad I paid for the extra leg on the trip. I basically discovered that ankle replacements are still lagging far behind hips and knees technologically. I wasn't a good candidate. The allograft proved to be less than I had hoped. As described to me, it wasn't a permanent solution, tending to fail in about the same time as a replacement. I was really intrigued by the idea of the ankle distraction, or arthrodiastasis though.
For those of you unfamiliar with the option, there are a few good scholarly medical articles available online. Just google the term. Basically, it is a procedure using an external frame that manually pulls apart the joint, creating space. The doctors will be the first to admit they don't really understand why it works. But offloading the joint with the frame, and then doing some weight bearing creates a chemical reaction in the body that can produce new cartilage to cushion the joint. It's not the same cartilage you were born with but it seems to be effective in producing some degree of pain relief. Even if the joint space collapses when the frame is removed, patients can still experience pain relief, sometimes for many (10+) years.
It is not a permanent solution, but seems promising as an alternative to fusion for the purpose of preserving the joint, any available motion, and delaying more drastic procedures while we all hope that technology advances in the field.
I decided a year ago this was the procedure I wanted to try because it would preserve my original parts, would preserve my motion, and because my body has reacted well in the past to minimal medical assistance. I'm all for trying the least invasive thing first. I absolutely want to avoid a fusion at this point because even at 50, I'm considered "young" in the medical community, and because our bodies are meant to bend at the joints. If you fuse one, that stress has to go somewhere, and in most ankle fusions, that's into the knee, back and hip. I already have back/hip issues from limping over the past year.
My local VA knows nothing about the distraction procedure, but did agree I could have it instead of the fusion IF I could find a VA doctor who would perform it in a VA facility. Wow. Talk about a needle in a haystack. Again, I won't bore you with the bureaucracy, but after six months, I realized if anything was going to happen, I was going to have to make it happen. I started making copies of my X-rays and sending out letters. I spent hours on the Internet researching possible candidates. And within the VA system, there aren't many. Actually, nationwide there aren't all that many. Although the procedure has been in the US for at least 30 years, there just aren't many of us ankle arthritis patients around to practice on.
I was stunned to receive prompt, informative responses directly from some of the most experienced people in the field of podiatry. I've had some great e-mail and telephone consultations. About half the people I contacted didn't feel arthrodiastasis was a workable option, or hadn't had much experience with it, or didn't believe it had much benefit. The other half were willing to try it for me, and a few felt it was the exact right choice. And after six months of active investigation and contacting, only one VA doctor was experienced in the procedure and willing to do it for me!
Trust me when I tell you, you didn't want to be my friend or family member over the last year as I've battled to get to this point. It has been a very long, frustrating road to find this one needle in the haystack. But that's one of the main reasons I'm writing this blog. If I can save anyone else the aggravation, I'd really like to.
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