I hope distraction will be the answer to your problems. It proved to be the answer to my ankle pain problems. I am in the final stages of the process now and I look forward to walking unaided (no crutches, no cane, no boot). Six months will go by quickly and you will start the year-long investment of time and effort to heal with the aid of an external fixator and good physical therapy. Pay attention when the surgeon lays out his plan to fix you and ask questions. It is fascinating how technology has advanced so much that procedures like this are now available instead of ankle replacements or fusions in every case. Good luck with the procedure and start counting down the weeks until you get to wear the contraption on your ankle. Remember, the fixator and the discomfort resulting from it is temporary (usually 12-16 weeks).
It's good to see you back on the message board! I miss you posts of your escapades. So your footplate catches onto everything, huh (smile); I laugh about that because I too got my footplate wedged and caught in anything and everything. Mine normally got caught under the cabinets as I sat in front of the vanity to brush my teeth and wash up. The hinge lock bolt would extend under the cabinet kick plate and I couldn't lift my leg to get away from the sink. A few times the footplate would slice the inside of my other ankle when I was crutching my way around. It broke the skin a few times and it hurt when it inevitably would bang into my other ankle when I got careless.
I envy you for swimming. As much as I wanted to, I couldn't figure out how I would negotiate myself from the edge of the pool to the bench along the wall in our indoor natatorium. I guess I could have crawled to my crutches and then I would still need to be careful with my crutches to avoid any standing water for fear of falling (as you did) - that was my biggest fear. Also, It seemed like it was going to be too much work to re-wrap my pin sites with gauze in the lockeroom. I wrapped my pin sites the entire time I wore the fixator to prevent any chance of infection. My wife did most of the cleaning of the pin sites because although I could reach them, I was not flexible enough to really see what I was doing or to truly clean them well. It was overkill but it worked because I never got an infection which was my goal. I want to swim now but I don't because I am not allowed to walk without the boot so I run into the same issues when getting out of the pool. My return to swimming will begin once I get the okay to take off the boot (less than 2 weeks from now).
I see Dr. F on Feb 25th in Manhattan (didn't realize how infrequently he took patients at his Queens office). I also cannot wait to return to physical therapy since he took me off PT once he removed the fixator. I look forward to the therapist regaining some of my lost ROM. It hurts so good (smile). I purchased a CD from HSS with all of my xray images. It is amazing how much of a difference there is when looking at the before and after images. Now I just want to test my leg and ankle to 100% unaided weight bearing by walking and going up and down stairs. I need to lose the 10 pounds I gained during my sedentary recovery posture (my foot up on pillows all the time). Swimming, biking, and universal weight machines will be soon in my future.
I had lots of problems with the four pins that went through my foot. These pins and the footplate were very uncomfortable and very restricting. My footplate was removed at week 10 by surprise as I described. I hope he does the same for you because it was much more comfortable once the distraction process was complete. Weight bearing will be much more bearable once the footplate is removed. I put more pressure on the inside of my foot now that the alignment has been changed. I think it will be the same for you.
Sorry about the loss of your cat and all of the snow you're dealing with. Time flies and you will soon have this experience behind you. Good luck and we are all glad you have a new computer to share your experiences.
Thanks a lot. Your encouragement means a lot, because you know what it is like. So I will hold on to the thought that it is worth the pain and trouble.
I agree, being able to go outside will be great and I am already thinking of ways to walk my dog myself. I go crazy when I have to stay indoors for a few days, so I feel for you right now and hope that spring will come soon. I may rent a scootmobiel after the first weeks ( I don't know what it is called in english, kind of a 3 wheel scooter for elderly and disabled)
I hope that you will lose your footplate soon, that will make life a lot easyer and probably makes weightbearing possible.
Hang in there and please keep us updated.
Last edited by Administrator; 02-13-2013 at 12:34 PM.
Thanks for your good advice. I will definitively write down all the questions I have for my dr so I will not forget to ask.
Its great that you can already tell that the distraction worked. My dr told me I will have to be patient because sometimes it takes a year befor you can see real progress.
Of course the procedure you and puppet are having is much more complex than mine will be, but even so, there is a difference in protocol. My frame will not be hinged, so I will not be needing much pt during distraction and afterwords only with caution because they are afraid it will damage the new tissue. I will not be permitted to swim, so I will have to think of a different way to get some excersise. Extra kilo's come easy to me. Also I will be permitted to walk in my own ortopedic shoes instead of a boot.
Maybe my dr is more old fasion, he will retire in 1,5 years, but still I heve faith in him. He has 15years of experience in ankle distraction and even much more with the ilizarov frame and that counts.
Thanks again and please keep posting.
Knowing that you and puppet can bear to have the cage fot 16 weeks makes me confident that I can for 10 . You guys really help.
That was interesting. What a heavy piece it is with all the hardware! My son had asked for it, he's into deconstructing things and welding pieces back together in new and unusual shapes, so it's in his hands now.
I did not have any beads on the wires, so as the pliers came out of the drawer, Dr. F asked if I thought I could handle the wire pull... he said it would hurt as much if not more to numb the leg than to bear the ripping out of the wires, so I babbled my way through it. I had driven myself - husband on business trip and most friends working days...
It was one of those mornings... husband gone, got kids off at 7, dishwasher flooded kitchen at 7:30, contractors arrived unannounced at 8 to replace railing on front stairs that I wiped out with a spectacular fall two weeks ago (fortunately I had pants on, both at the past fall and when the contractors arrived), no time for shower after that as the trip to NYC/queens can be 45 minutes or an hour and a half depending on traffic... and I was NOT going to miss the appt with Dr. F.
Got out the door, into the car and realized I'd left the dog out, back in the house, dog in, back to the car and realized we'd used husband's iphone gps previously so the queens office directions not in my car gps, so back in the house to get the queens address - kind contractors stopping work at each pass, making sure stairs all clear, sprinkling gravel and ice melt - amazing how much respect that frame commands to people who have not met it before...
Footplate removal, snip zip ouch. and again. and again. one more time.
This morning it feels a little like the ankle went through a meat grinder - all that new and donor tissue smashing together and protests of foot pieces rudely pierced and suddenly not. Not going far today.
I am amazed and a little envious that you had little pain with all of this, DJS. You must have some nerve issues as well, or I am just really oversensitive because I do not object to pain, I have experienced my share, and I'm no wimp, but jiminy crickets (message board has issues with stronger words) there are times this has really flipping hurt. I also believe that there are differences between continuous pain with no solution being offered, and pain that is working towards something... I also have issues describing pain on the current 1 to 10 system, as a constant 4 can be more maddening than an intermittent 7...
Anyway, I am delighted that you are progressing. So far I managed to keep off gaining weight, the pain helped. From previous leg issues I was aware to be careful, it's easy to eat at active level, and eat for comfort. But I did get soft and hard in strange places. One of the kids I work with was impressed with my shoulder and arm definition from crutching, but omg the below the waist is in sad shape. I do not look in the mirror at the Y, just walker my way through.
To swim at the Y, the non wheel walker is the only way to get anywhere on wet tiles. Slow but sure. I park the sucker a sit and scoot away from pool edge - I have no pride about looking graceless. The walker is foldable and flipped upside down balances easily between your hands on the knee scooter handle bars, to get in and out of the facility. I guess that's more descriptively useful for Hilde now, as she's going in to this and we're going out.
I still think we need a t-shirt at the very least after getting through this.
It is fascinating how small the world is, I mentioned to Dr. Fragomen yesterday that I had spoken with someone from the Netherlands who was heading in to distraction. He said that you will have more rings on your leg than they use here, and no hinged motion, as you stated... the technique is in fact a Dutch idea. He is surprised and sympathetic that you have to wait so long - in New York they are very busy too, he suspects that your Dr.'s office has people from many countries looking for treatment.
Again, after being confined with all the snow and ice, I think it will be beneficial to start in better weather.
I am happy that I was able to move ankle during distraction - I still have rings on for healing break above, and although it hurts to move ankle today, I can move it, it is not so stiff as it might have been after being still and separated for months.
I wonder where you are in the Netherlands, I had friends in Amsterdam and up north in Wienem Weisel (sp) years ago, and loved visiting when I was in early 20's - my daughter is thinking of university in Netherlands or in England - my husband is German so the children have two passports. The world is so much smaller than it used to be.. look at us! We three talking on a message board!
It is very comforting. And I will be happy to talk with you through your journey!
Hello, thats funny, but I am not really suprised. I think the world of distraction specialists is a very small one. If they don't know one another personelly, at least they read the studys.
If I am right, the technic is originally from dr v Roermund, my orthopedist, and later perfected by yours. To me too, it looks like a good idea to keep the ankle mobile, but nobody asks me On the other hand the results are good this way too, so I am not worried.
I guess it was a good thing you didn't know the wires were to be taken out without anaestesie or something. I think you are a hero!
I asked the nurse how long it takes before people start working with the frame. She said that most people don't. How was that for you? When I also told I work in a hospital she said it would be unwise because of the infection hazard. I can do a lot on my pc at home, but man 3 months at home, must be so boring.
The pinholes in your foot should heal quickly, so hopefully you dance with the frame in a few days.
I lives between Delft and The Hague. For us that is not really close to Amsterdam, but I think for someone from America its like the backyard. If you ever come here, or your daughter, you are welcome.
Just a short update after my second visit ti the dr.
The ct scan showed that the subtalar joint was allright, so that is a relief. Ankle joint is substantionally narrowed so that one will be distracted. There is also a large bone spur at the front wich has broken off and that will have to be taken away when the dr cleans out the joint. I am put on the ok list now. Glad that its final now, and I don't really mind waiting.
Are you already counting down the weeks Puppet?
And DJS, stiil doing well?
Glad you got your second visit to the doctor with less waiting time than the first!
I hope your loose spur isn't catching in the joint, I had one of those grinding around and it's a vicious surprise pain.
Had another wire removed yesterday, from 8 wires and three rods, two rings and a foot plate, I'm now down to 3 wires, 3 rods, and 2 rings. I kept getting infections from one wire that was constantly tearing and irritating a muscle, becoming inflamed and turning into a mess.
Got my surgery date also, March 18 for removal of the rest.
Since the footplate came off, life has become more manageable. I can weight bear, (still use crutches for help), wear yoga pants that fit over the rings, sleep on my side, and I'm no longer destroying the porcelain finish of the bath upstairs. Can't quite walk the dog yet, but I do get in and out of the shops with the knee scooter - the handlebars fold down and it's an easy lift into my van. I put a bicycle basket on the handlebars, works great for holding the purchases through the store. The knee scooter requires both hands on the handlebars when you are in motion... a tiny pebble or tile crack in the floor can whip the steering to the side and tip you if you aren't careful.
I have callouses on the heels of my hands from months of crutches. In our house there are four levels, so the scooter is of limited use, most of the time in the house I'm on crutches or hopping from stool to stool. I'm at 12 weeks now, can keep the foot down for long stretches without excessive swelling, but I've finally gotten really tired of this. Now that the end is near, I'm exhausted. 84 days passed and 17 more feels like an eternity. I'm starting to eat from boredom and that's not good either.
I've tried to keep up working but it's been difficult and I've had to pass on some projects that I really should have done. I've got a costume order to fill and I just can't seem to get started. I need a kick or a laugh to turn this around.
What's up Hilde?
Last edited by moderator2; 03-01-2013 at 10:18 AM.
Only 10 days to go. You can do that. Seems that you have found a way to lose some weight did the dr take it out in the office? I guess you were happy to get rid of it, it must have hurt a lot. I hope that it didn't give any permanent damage in the muscle?
Not being able to work is difficult even more if you have your own business but I will not kick you for that.
Until now the risk of the bonespur getting in the joint seems small. The thing is large and the space small, but since I know it is already broken partially, I am more careful. Stopt trying to stretch in dorsiflexion and PT. I told him I will see him again after the operation.
As we say in Holland: de laatste loodjes wegen het zwaarst. It is the last straw that breaks the camels back. But you have come so far; you won't break!
Just hang in there, I am sending you supportive thougts
I'm glad you ladies kept up the communication during this trying time (Puppet with the external fixator and Hilde awaiting distraction surgery). Puppet - by the time you read this you should have had the fixator removed since your surgery date was set for last week. Now comes the weeks of no physical therapy or real exercise. I was ordered to do nothing for six weeks when my contraption was removed to allow my bone holes to fully heal. I did not get a cast but wore a boot and used a bone stimulator.
I gained a total of 17 pounds over the six-month ordeal. I am now 12 pounds down after joining weight watchers 3 weeks ago (smile). I am walking without being aided by crutches, cane, or boot. I still have a substantial limp but as the days go by and with exhausting physical therapy I am making microscopic gains with my range of motion. My dorsiflexion has improved to 10 degrees; however, my plantar flexion has stalled due to scar tissue buildup and my ankle being relatively stationary for so many months. I am determined to break through and to get my foot to point through ROM in the ankle. Body positions for plantar flexion stretches are difficult and awkward but I will prevail.
I increased my PT to 3 times per week (M-W-F) in order to have skilled PTs work on my ankle to loosen it up. I am wearing a compression stocking on my left ankle to prevent it from swelling and to fit into my shoes. It is such a pleasure to finally wear my left shoes which have been in the closet for months. There is a visual difference between my left and right shoes in how worn they are. Going down stairs properly is my biggest challenge next to walking without a limp. My good leg has lost some muscle strength due to the lack of going up and down stairs. I am able to go up the stairs normal if I don't hang my heal off each step which makes me rely on calf strength to support my body. I have a hard time right now walking on the balls of my feet with my heels off the ground. This tippie-tow walk that I am asked to do at PT is most difficult and leaves me sore. Also, balancing on my bad ankle/foot is tough. I can keep my balance for about 12 seconds before putting the other foot down or grabbing for support. However, 12 seconds is much better than when I first tried it (3 secs). I notice I have some brief outer ankle pain following tippie toe walks and balance testing. Dr. Fragomen told me that the pain I feel in the morning when I first get up or when I have been seated for a long time and attempt to get up and walk, is NORMAL. He called it "start-up pain." I keep a cane near my bed for my trips to the bathroom at night to work through this start-up pain.
My osteotomy to correct my foot alignment to my leg has totally healed. The wounds have all closed and there are dark, pea-sized blemishes that remain where the external fixator rods once penetrated my skin. My fibula and tibia bones are rock solid now and provide full support.
Puppet - I am also sending supportive thoughts your way and wish you well in this next phase of your recovery. Endure the weeks of inactivity following the removal of your fixator and look forward to the days you can return to the pool and exercise again. Learn from my mistake and adjust your diet to compensate for being sedentary.
Hilde - don't hesitate to ask me for any details of my experience during your distraction ordeal. I hope your fixation and bone spur removal procedures are successful in getting rid of your ankle pain.
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Seems like you are doing well, are you? I am interested in how long it will take befor you can say you improved comparing to before the frame. Even though that will be different for everybody.
What scares me most are the nights. Maybe I should practice sleeping on my back, but I am afraid that I snore if I do that. Do you have tips for a good sleep?
You certainly seem well-informed and educated about your medical procedures and rehabilitation. I'm about to have a total knee replacement, de-fixation of a tibial plateau fracture and dual internal fixation at a different, lower tibial location. Corrective ankle surgery, for me, is likely 24-30 months away; so, slightly less than that is where I join your stage of this medical saga. Much of what you, and others, are writing, is of great interest as I am about to embark on my round two the first or second week of May. I joined the website and posted 3-31 in the Knee and Hip section under Newbie and TKR and fixations under sam197. When I get more time, I'll read everything attached here. But in the meantime, if you have any practical advice whatsoever, I'm all ears.
It sounds as if you have a series of difficult surgical corrections. Did you have an accident of some sort? TKR is what I have to look forward to in about 3-5 years, so I understand your situation. Unfortunately, I have a bad right knee and a surgically corrected left ankle. I am concentrating totally on rehabilitating my ankle right now, so the knee fix has been put on the back burner for now until my left leg and ankle can support me when the doctors start working on the right leg/knee.
My only advice to you is to follow the doctors orders to the letter and try your best to avoid infections which can set you back and delay your recovery progress. Also, after surgery, work hard in physical therapy despite the pain in order to improve your long-term mobility. Good luck and I pray your procedure goes well.
When is your distraction surgery scheduled for? Although your fixator will not be hinged, it will still provide some benefit to your ankle in the long run. You will just have a little more physical therapy to get the range of motion back and the muscles to respond to movement again. You will be fine though.
As for me, it has been 3-1/2 months since my fixator was removed. I am doing much better. My pain was severe before I had my ankle corrected and I consider the surgery a big success. I knew it would be a challenge to get back to my old self once I committed to this type of surgery. I was told to expect about one full year before making a comparison to my pre-surgical pain and functionality of the ankle. Right now I am at the 7 month mark and I still have about 5 more months before I reach my 1 year anniversary of my distraction/osteotomy surgery.
I have had some minor setbacks during my physical therapy here and there but nothing has prevented me from working hard to get better everyday. As a matter of fact I had a setback today. I was cutting my lawn and as I was pushing the lawn mower, I stepped wrong with my good ankle on the right. This slight stumble caused me to trip and in an attempt to prevent myself from falling, I put all my weight on my left foot and strained some muscles which run down the outer part of my foot near my ankle. I have strained these muscles a few times during my recovery on occasion. Usually, I strain them when I misstep going up the stairs and my heel overhangs the stair tread and I (again) put my full weight on this foot. This ankle and foot is not strong enough yet to withstand my entire body weight on its own. I will eventually get this foot/ankle strong enough to one day support my weight.
I am very patient following my ankle surgery and I pray that I will one day return to normal. It will take hard work and exercise to get there and I am willing and able.
As for advice on sleeping - I am very comfortable sleeping on my back. My wife, on the other hand, prefers sleeping on her side and stomach (so I understand your dilemma). You must sleep on your back when you have an external fixator attached your ankle. Sleeping in this position is the only way to keep your foot elevated on pillows as you sleep. You will have to get used to it. I still to this day sleep on my back in order to continue elevation and to allow my ankle to shrink over night after a long day of swelling. I have an advantage because my wife and I bought an adjustable bed about 7 years ago, so we can independently position either side of the bed to support raising the leg area to keep my ankle at a level higher than my heart. We are blessed to have this bed because it is similar to the one in the hospital. But lots of pillows can accomplish the same thing too. Snoring will be an issue when you sleep on your back but you will need to find a position to keep your head back to widen your airway. There are also dental appliances that can help position your jaw to reduce snoring. I am rooting for you for your upcoming surgery and sending supportive thoughts your way. Please keep me posted on your progress and take care.