I am in George visiting Maddie for about 10 days.
Last week I was supposed to go for an Oncologist visit. She called me the morning before, and said that she was cancelling my appointment, and could I come on the 29th of August. That was on the 5th of July. I can't believe the next available date was 7 weeks later. So...I did not make an appointment. That will teach her. If I die before then, that would show her. I can't be made to wait 7 weeks. I'll just die, so there! I have a feeling that it wouldn't bother her at all if i died before the next available appointment date.
On Tuesday I spent many hours at the prosthetic place. Bradley was busy, so I was attended to by a cute Serbian lady. She did everything right, and had a new socket that was hopefully going to allow me to be able to walk, while the torn muscle in my stump has time to heal.
This socket also was not using a silicone liner, but had direct contact between the socket, and my skin on the stump. We got the socket on, but the skin was stuck to the socket. e couldn't get the socket off. it would not slide on the skin.
This socket was able to take the full weight of walking. I was pleased with how the alignment of the leg made it very easy to walk.
We finally got the socket off after 20 minutes of pouring soap down inside the socket to release the skin to socket grip. We then washed out the socket.
She went to correct a small place that was hurting me, and returned. We again put on the socket. It felt good, and would take my full weight without any pain. She asked me to go to the parallel bars to re check the alignment. I used the crutches just in case of a problem, and when I went to swing my leg forward on the second step, I got a sharp stabbing pain in the stump. I collapsed and fell, But the Serbian lady caught me. It hurt so bad I had tears.
It hurt exactly where it hurt a month earlier, when I initially hurt the stump. About at the end of the femur, where it comes into contact with the folded over muscles from the amputation.
We all agreed that I should just go visit Maddie, and be totally in the wheel chair for a few weeks, and try to let the wound heal.
I drove down yesterday from Pretoria To George. About 1300km (800 miles) I stopped a few times to nap, and the whole drive took me 19 hours.
--
July 16
I am a terrible blogger.
Very little happening in George. The licence plates on the cars registered here all start with CAW---. That stands for "Cold And Wet"....How very true.
All we do is sit around staying warm, and watching TV...It is great :-)
My stump is getting better, but it really must have took some strain, as it still is painful.
later
--
Friday, 15 July 2016
Saturday, 9 July 2016
July 9 2016 - A beautiful cold day.
10:00 Saturday Morning...
I am not made for the cold. It is 12C (53F) inside my house.
Three and a half weeks ago my stump hurt itself inside. I have been in a wheel chair since. Some times braving the use of crutches for shopping.
The injury fits all the symptoms of a muscle from the amputation having healed to the femur, that suddenly tore away from the bone. The result is similar to a torn muscle.
Now over 3 weeks later it is healing, and I have less pain, but I still can not get the silicone liner on the stump. And my current prosthetic leg socket requires that I use a silicone liner.
The pain is deep inside the stump. It is made much worse when the skin of the stump is pulled in the direction of my hip or groin. This is the exact action needed to put the silicone liner on, or when pushing the stump into the socket.
My prosthetist (Bradley) has been trying to build/invent a socket that does not require a liner, and does not require pushing, to get the socket on.
This is very time and labor intensive for Bradley, his assistants, and for me. Every new idea has to be implemented on a socket with mold making, silicone shapes, and plastic castings. A few days ago Bradley took another plaster mold of my stump. I had been wearing a compression sock on the stump for days to make the stump as small as possible. Wearing the compression sock is not painful, but getting it on, is a long slow process if I avoid pain.
A small, low volume stump is much better than a stump that has water, muscle, or fat in it.
Check out the size of the thigh socket on this Para-Olympian runner.
https://en.wikipedia.org/wiki/Sarah_Reinertsen
--
Proprioception is the unconscious perception of movement and spatial orientation of a limb.
This is important when walking with a prosthesis, because there is no normal nerve feedback regarding the position of the foot or leg. I find it essential to know when the heel is down, and the knee is locked.
When you have been sitting funny for a long time, and try to stand up, finding out that your leg or foot is numb (asleep), you immediately sit back down. You can not walk if you can not tell if your leg can support you, or even where your foot is. I have this "numbness" permanent in my prosthetic leg. What paralyzes you, is normal for people wearing a prosthetic leg.
The closer the prosthetic leg is to the skeleton, the greater the sensitivity, and feedback from the prosthesis to the brain. Many people choose to have the prosthesis attached physically to the end of femur.
This is called Osseointegration.
Wikipedia says:
What are the advantages of Osseointegration?
No socket – therefore, no sweating or skin irritations caused by the socket
No pain, pressure or discomfort caused by the socket,
Easy to don and doff the prosthesis.
Excellent suspension.
No restriction of hip movement.
Comfort in the sitting position.
Osseoperception – a more natural sensation of the prosthetic limb
Increase of bone and muscle mass
What are the disadvantages?
Long rehabilitation process: in total, it may take up to 18 months for the entire process to be complete
Risk of infection
Risk of fractures and loosening of the implant
No high-impact activities permitted, such as running or jumping
Swimming in public facilities is not recommended
Daily care of the abutment skin area is required
It is not for everyone, and hopefully not for me. The reason I have been learning about it, is that often it is used by amputees that are unable to wear a socket.
--
OK... back to my 5 hour visit to the prosthetic shop/factory yesterday.
Bradley had a long tube shaped piece of very slick parachute cloth that is put over my bare stump. The end of it goes through the small hole at the bottom of the socket. This hole is for the vacuum valve. I put my stump down inside the slick cloth coated socket, and then Bradley would pull out the cloth through the hole.
This means my stump is "pulled into" the socket, and not pushed into it. It gave me zero pain.
After pulling the cloth out, my stump was way down into the socket, and my dry skin was sort of stuck to the silicone inside of the socket.
The way I currently don the socket is to lubricate the silicone liner with a glycerin mix, and push the stump down inside the socket, called a "wet" doning. Bradley was trying a "dry" doning with no lubricant of any kind.
But my stump wasn't far enough into the socket. I was not able to force the stump in any farther because of the dry skin against the silicon was forming a non slip surface. Getting the socket off was a battle. It was really stuck to the skin. Fortunately pulling my stump is not painful, and with one assistant holding me tight and pulling, and Bradley and another assistant pulling the socket, we were able to get the socket off.
We tried many ways of getting the stump farther into the socket. All failed.
We got desperate, and cut a slot in the outer hard shell of the socket. $$$ This expanded the shell, and I was able to get farther into the socket, but still not enough.
Then we also cut the inner silicone liner of the socket. $$$ This allowed me to get the stump in to the proper depth, but made the socket very weak. But now we know the exact amount necessary to expand the socket to make it work by measuring the gap in the cut. Next week they will build another, slightly larger socket, and we will try the cloth through the hole trick, and dry doning with the larger socket.
Hopefully I'll end up with a tight socket that doesn't cause me any pain to wear, or to put on.
I was supposed to be in George with Maddie last week, and then again this week, and now even next week is not going to happen.
Planing a life is futile, when that life has to include a prosthesis and cancer.
--
I am not made for the cold. It is 12C (53F) inside my house.
Three and a half weeks ago my stump hurt itself inside. I have been in a wheel chair since. Some times braving the use of crutches for shopping.
The injury fits all the symptoms of a muscle from the amputation having healed to the femur, that suddenly tore away from the bone. The result is similar to a torn muscle.
Now over 3 weeks later it is healing, and I have less pain, but I still can not get the silicone liner on the stump. And my current prosthetic leg socket requires that I use a silicone liner.
The pain is deep inside the stump. It is made much worse when the skin of the stump is pulled in the direction of my hip or groin. This is the exact action needed to put the silicone liner on, or when pushing the stump into the socket.
My prosthetist (Bradley) has been trying to build/invent a socket that does not require a liner, and does not require pushing, to get the socket on.
This is very time and labor intensive for Bradley, his assistants, and for me. Every new idea has to be implemented on a socket with mold making, silicone shapes, and plastic castings. A few days ago Bradley took another plaster mold of my stump. I had been wearing a compression sock on the stump for days to make the stump as small as possible. Wearing the compression sock is not painful, but getting it on, is a long slow process if I avoid pain.
A small, low volume stump is much better than a stump that has water, muscle, or fat in it.
Check out the size of the thigh socket on this Para-Olympian runner.
 |
| This lady is Sarah Reinertsen. |
--
Proprioception is the unconscious perception of movement and spatial orientation of a limb.
This is important when walking with a prosthesis, because there is no normal nerve feedback regarding the position of the foot or leg. I find it essential to know when the heel is down, and the knee is locked.
When you have been sitting funny for a long time, and try to stand up, finding out that your leg or foot is numb (asleep), you immediately sit back down. You can not walk if you can not tell if your leg can support you, or even where your foot is. I have this "numbness" permanent in my prosthetic leg. What paralyzes you, is normal for people wearing a prosthetic leg.
The closer the prosthetic leg is to the skeleton, the greater the sensitivity, and feedback from the prosthesis to the brain. Many people choose to have the prosthesis attached physically to the end of femur.
This is called Osseointegration.
What are the advantages of Osseointegration?
No socket – therefore, no sweating or skin irritations caused by the socket
No pain, pressure or discomfort caused by the socket,
Easy to don and doff the prosthesis.
Excellent suspension.
No restriction of hip movement.
Comfort in the sitting position.
Osseoperception – a more natural sensation of the prosthetic limb
Increase of bone and muscle mass
What are the disadvantages?
Long rehabilitation process: in total, it may take up to 18 months for the entire process to be complete
Risk of infection
Risk of fractures and loosening of the implant
No high-impact activities permitted, such as running or jumping
Swimming in public facilities is not recommended
Daily care of the abutment skin area is required
It is not for everyone, and hopefully not for me. The reason I have been learning about it, is that often it is used by amputees that are unable to wear a socket.
--
OK... back to my 5 hour visit to the prosthetic shop/factory yesterday.
Bradley had a long tube shaped piece of very slick parachute cloth that is put over my bare stump. The end of it goes through the small hole at the bottom of the socket. This hole is for the vacuum valve. I put my stump down inside the slick cloth coated socket, and then Bradley would pull out the cloth through the hole.
This means my stump is "pulled into" the socket, and not pushed into it. It gave me zero pain.
After pulling the cloth out, my stump was way down into the socket, and my dry skin was sort of stuck to the silicone inside of the socket.
The way I currently don the socket is to lubricate the silicone liner with a glycerin mix, and push the stump down inside the socket, called a "wet" doning. Bradley was trying a "dry" doning with no lubricant of any kind.
But my stump wasn't far enough into the socket. I was not able to force the stump in any farther because of the dry skin against the silicon was forming a non slip surface. Getting the socket off was a battle. It was really stuck to the skin. Fortunately pulling my stump is not painful, and with one assistant holding me tight and pulling, and Bradley and another assistant pulling the socket, we were able to get the socket off.
We tried many ways of getting the stump farther into the socket. All failed.
We got desperate, and cut a slot in the outer hard shell of the socket. $$$ This expanded the shell, and I was able to get farther into the socket, but still not enough.
Then we also cut the inner silicone liner of the socket. $$$ This allowed me to get the stump in to the proper depth, but made the socket very weak. But now we know the exact amount necessary to expand the socket to make it work by measuring the gap in the cut. Next week they will build another, slightly larger socket, and we will try the cloth through the hole trick, and dry doning with the larger socket.
Hopefully I'll end up with a tight socket that doesn't cause me any pain to wear, or to put on.
I was supposed to be in George with Maddie last week, and then again this week, and now even next week is not going to happen.
Planing a life is futile, when that life has to include a prosthesis and cancer.
--
Saturday, 2 July 2016
2 July 2016 - Cold on a Saturday morning
01:30
A blog at this time of the night is never a good thing. I can not believe I am having such bad PLP. I thought that was a thing of the past. Not so.
I wore the silicone liner for a few hours yesterday evening. That extra compression on the stump may be the cause.
I have not been able to get the silicone liner on for weeks now. Today I found that if I press the stump down hard onto the wheel chair cushion, I can get the liner on with only a little pain. Too bad I can't do the same with the socket.
Plan "A", had me being in George with Maddie by early next week. Now I have blood tests on Tuesday, and Oncologist on Wednesday.
My prosthesis guy called, and wants to try to design a different socket on Wednesday also. He will probably make another mold then, and I'll get the new socket on Thursday. I think there is still to much pain for me to be able to judge the value of another socket. I still have 2 sockets, and both cause lots of pain. Both were good sockets in their time. The stump shrunk to much for the one, and the second one was much better, and I was able to walk, and even do the park runs.
I removed the latest socket with the Texas flag and the holes, and installed the old, big one onto the knee. I did this myself at home. This socket was too big 3 weeks ago, and now my stump has swollen up so much over the last few weeks, that socket is now to small. I would have to push lots to get the stump in it now, and any pushing is painful. I am such a wimp!
As I am feeling sorry for myself right now, I have decided to make and consume a hot dog, jalapeno omelet.
I don't know why, but jalapenos always cheer me up.
Feeling sorry for myself, makes me feel sorry for myself.
Feeling sorry for myself is recursive.
Have you ever seen a sad three legged dog? Not me. They still just want love and someone to play with. I could learn lots from dogs.
A baby bird that falls out of the nest doesn't feel sorry for itself. Even as it gets eaten by a cat. I could learn lots from baby birds.
--
02:20
Great omelet.
Lots of jalapenos. Now I have hiccups.
It has been cold the last few days. There is a cold front coming through, and tonight will be just above freezing. Most South African houses don't have any form of insulation. At least I have solar panels, so once the sun is up I can cheaply run a small heater.
Day before yesterday I drug a ladder from the shed, and got up to the attic. I put a desktop fan up there blowing down through a hole on a board that fits in the trap door. This blows hot attic air down into the bedroom. It also blows dust and small attic trivia. The attic got up to 28C yesterday while the outside temperature never got above 18C. I also built it a trap door held up with magnets to try and keep the night time heat in.
Climbing the ladder with only one leg is not for the faint hearted. Falling could be the start of some real problems. But then again it could also be the end of most of my problems. So I figured 50/50, and up I went.
The biggest difficulty was my good leg getting tired. There is no place to sit and rest on a ladder. So I would climb up, work for a bit, then down to the wheel chair for a rest, then back up again. 5 times to get everything done.
Yesterday was a laundry day. I managed to get all the clean, wet clothes out of the washing machine, and into the laundry basket. While I was in the wheel chair, with the basket on my lap, navigating around the house toward the back yard, the basket mysteriously fell off my lap. Clothes stops/pegs/pins and laundry all over the ground. So I started picking things up and fell forward out of the wheel chair. It takes some doing to fall out of a wheel chair. I can add that to my "Been there, Done that." list.
As I was laying on my "clean" clothes on the ground, I figured this was a good time to pick stuff up and refill the laundry basket, then clumsily got back into the wheel chair.
Back inside to rinse the laundry in the machine again. I figured the dirt wasn't really "dirty" like the stink from my armpits is, so I didn't bother with soap this time.
I found a bungee cord that I used to use for holding stuff on the back of a motorcycle, and once the laundry basket was again on my lap, I secured it there with the bungee cord. A few hours later I brought in all the still damp laundry.
I'm sure my many friends had a busy productive day doing many things. I just did laundry.
This PLP is not getting less. It used to go away whenever I was busy. Not this time. I think I am going to drug up with pain killers, read a bit, and then probably sleep till past noon.
I had a friend once that always slept late. He used to say that if you get out of bed before noon, then you just wasted half the day. :-)
03:17
---
A blog at this time of the night is never a good thing. I can not believe I am having such bad PLP. I thought that was a thing of the past. Not so.
I wore the silicone liner for a few hours yesterday evening. That extra compression on the stump may be the cause.
I have not been able to get the silicone liner on for weeks now. Today I found that if I press the stump down hard onto the wheel chair cushion, I can get the liner on with only a little pain. Too bad I can't do the same with the socket.
Plan "A", had me being in George with Maddie by early next week. Now I have blood tests on Tuesday, and Oncologist on Wednesday.
My prosthesis guy called, and wants to try to design a different socket on Wednesday also. He will probably make another mold then, and I'll get the new socket on Thursday. I think there is still to much pain for me to be able to judge the value of another socket. I still have 2 sockets, and both cause lots of pain. Both were good sockets in their time. The stump shrunk to much for the one, and the second one was much better, and I was able to walk, and even do the park runs.
I removed the latest socket with the Texas flag and the holes, and installed the old, big one onto the knee. I did this myself at home. This socket was too big 3 weeks ago, and now my stump has swollen up so much over the last few weeks, that socket is now to small. I would have to push lots to get the stump in it now, and any pushing is painful. I am such a wimp!
As I am feeling sorry for myself right now, I have decided to make and consume a hot dog, jalapeno omelet.
I don't know why, but jalapenos always cheer me up.
Feeling sorry for myself, makes me feel sorry for myself.
Feeling sorry for myself is recursive.
Have you ever seen a sad three legged dog? Not me. They still just want love and someone to play with. I could learn lots from dogs.
A baby bird that falls out of the nest doesn't feel sorry for itself. Even as it gets eaten by a cat. I could learn lots from baby birds.
--
02:20
Great omelet.
It has been cold the last few days. There is a cold front coming through, and tonight will be just above freezing. Most South African houses don't have any form of insulation. At least I have solar panels, so once the sun is up I can cheaply run a small heater.
Day before yesterday I drug a ladder from the shed, and got up to the attic. I put a desktop fan up there blowing down through a hole on a board that fits in the trap door. This blows hot attic air down into the bedroom. It also blows dust and small attic trivia. The attic got up to 28C yesterday while the outside temperature never got above 18C. I also built it a trap door held up with magnets to try and keep the night time heat in.
The biggest difficulty was my good leg getting tired. There is no place to sit and rest on a ladder. So I would climb up, work for a bit, then down to the wheel chair for a rest, then back up again. 5 times to get everything done.
Yesterday was a laundry day. I managed to get all the clean, wet clothes out of the washing machine, and into the laundry basket. While I was in the wheel chair, with the basket on my lap, navigating around the house toward the back yard, the basket mysteriously fell off my lap. Clothes stops/pegs/pins and laundry all over the ground. So I started picking things up and fell forward out of the wheel chair. It takes some doing to fall out of a wheel chair. I can add that to my "Been there, Done that." list.
As I was laying on my "clean" clothes on the ground, I figured this was a good time to pick stuff up and refill the laundry basket, then clumsily got back into the wheel chair.
Back inside to rinse the laundry in the machine again. I figured the dirt wasn't really "dirty" like the stink from my armpits is, so I didn't bother with soap this time.
I found a bungee cord that I used to use for holding stuff on the back of a motorcycle, and once the laundry basket was again on my lap, I secured it there with the bungee cord. A few hours later I brought in all the still damp laundry.
I'm sure my many friends had a busy productive day doing many things. I just did laundry.
This PLP is not getting less. It used to go away whenever I was busy. Not this time. I think I am going to drug up with pain killers, read a bit, and then probably sleep till past noon.
I had a friend once that always slept late. He used to say that if you get out of bed before noon, then you just wasted half the day. :-)
03:17
---
Sunday, 26 June 2016
June 26 2016 - No News Blog
Very little has happened since my last blog.
There are so many people trying to help me with my prosthetic problems, in so many ways, but I am still in the wheel chair, and still have deep strong pain in my stump. It is sad.
I went for x-rays, and a sonogram on the stump. My surgeon also saw my good right leg,
and he got very worried about it, so I had x-rays and a sonogram on that leg also. The calf muscle is very hard. As if there is a blockage somewhere. The toes are a constant 10 degrees C (18F) lower in temperature than the thigh.
The x-rays, and sonogram gave good news and bad news. Good news was no physical injuries in either leg. No tumors, visible damage, blockage, and no blood clots.
The bad news was that the cause of the stump pain is still a mystery.
It is now 14 days since the stump hurt itself. It is a bit better, but still a long way from able to get a prosthetic socket on.
Today with only a nylon compression stocking on, I tried to put the socket on. It made it in about 10 cm (4 in) then the pain started. I then tried my old socket that was replaced because it was too big. It also hurts, but not as bad. The silicone liner is much thicker than the nylon compression stocking, so it would be much more painful with the liner on.
My prosthesist has loan of a fancy bionic knee that I can use for 2 weeks. I am sad that such wonderful opportunity is wasted.
My Brother has bought an old, worn, leaky Total Knee 2100. If we can somehow fix it up, I would then have a super knee. But I can't even get a socket on. Grrr!! :-(
I read online about a woman that also had a similar pain to my stump pain. She said:
Things were looking good, but then about a month later, disaster struck. A sudden pain in the back of my stump caused me to stop immediately and I could walk no more. I had to be helped and could not even walk or put my other leg on – the pain was so intense. From then followed six weeks where I could not walk, I was back on crutches and could not work. I was devastated. Worst of all, nobody could really tell me what I had done. It was put down to nerve pain and I was on a lot of painkillers. It turns out that it was probably a muscle tear. Eventually, after about six weeks I could wear my walking leg for a few hours a day pain-free until gradually I could wear it all day. But, I had lost a lot of muscle strength in my stump and that had to be built up again.
So quickly things can go so wrong. That will make me wary of doing long walks, or doing anything on my own.
One thing I am very fortunate about, is my love of programming. So the last few weeks stuck in a wheelchair have given me lots of time to work on programming different algorithms for the routing of train, internet packets, and chess pieces. I have truly enjoyed doing that.
--
There are so many people trying to help me with my prosthetic problems, in so many ways, but I am still in the wheel chair, and still have deep strong pain in my stump. It is sad.
I went for x-rays, and a sonogram on the stump. My surgeon also saw my good right leg,
and he got very worried about it, so I had x-rays and a sonogram on that leg also. The calf muscle is very hard. As if there is a blockage somewhere. The toes are a constant 10 degrees C (18F) lower in temperature than the thigh.
The x-rays, and sonogram gave good news and bad news. Good news was no physical injuries in either leg. No tumors, visible damage, blockage, and no blood clots.
The bad news was that the cause of the stump pain is still a mystery.
It is now 14 days since the stump hurt itself. It is a bit better, but still a long way from able to get a prosthetic socket on.
Today with only a nylon compression stocking on, I tried to put the socket on. It made it in about 10 cm (4 in) then the pain started. I then tried my old socket that was replaced because it was too big. It also hurts, but not as bad. The silicone liner is much thicker than the nylon compression stocking, so it would be much more painful with the liner on.
My prosthesist has loan of a fancy bionic knee that I can use for 2 weeks. I am sad that such wonderful opportunity is wasted.
My Brother has bought an old, worn, leaky Total Knee 2100. If we can somehow fix it up, I would then have a super knee. But I can't even get a socket on. Grrr!! :-(
I read online about a woman that also had a similar pain to my stump pain. She said:
Things were looking good, but then about a month later, disaster struck. A sudden pain in the back of my stump caused me to stop immediately and I could walk no more. I had to be helped and could not even walk or put my other leg on – the pain was so intense. From then followed six weeks where I could not walk, I was back on crutches and could not work. I was devastated. Worst of all, nobody could really tell me what I had done. It was put down to nerve pain and I was on a lot of painkillers. It turns out that it was probably a muscle tear. Eventually, after about six weeks I could wear my walking leg for a few hours a day pain-free until gradually I could wear it all day. But, I had lost a lot of muscle strength in my stump and that had to be built up again.
So quickly things can go so wrong. That will make me wary of doing long walks, or doing anything on my own.
One thing I am very fortunate about, is my love of programming. So the last few weeks stuck in a wheelchair have given me lots of time to work on programming different algorithms for the routing of train, internet packets, and chess pieces. I have truly enjoyed doing that.
--
Saturday, 18 June 2016
June 18 2016 - New Pain
I haven't blogged in a while. The feelings, and thinking's lately have been something I just don't feel like sharing.
About 4 days ago while walking in the kitchen with my prosthesis on, I got a very sharp, stabbing pain deep inside my stump. I could put no pressure on the prosthesis. I finally sat on the floor and removed the leg, then slid on my ass across to the wheel chair.
What would I have done, if I was in the States, out watching bears, or walking on the ranch?
Now 4 days later, if I grab the stump thigh gently, and pull the skin up toward the hip I get a very sharp pain deep inside the stump. I can slap and roughly massage the stump end, and all seems fine there. But moving the skin up toward the hip is excruciating. My little brain says there is damage from the end of the bone to the muscles that were cut off during the amputation. Pulling the muscles up into contact with the bone is when the pain occurs.
I have not been able to get the silicone liner on, and the thought of putting on the socket makes me cringe. The socket would be extremely painful to get on, as I would need to shove my stump down inside the socket.
When the socket is on correctly, all my weight is on the skin of the thigh. Now, even a few ounces of pressure pulling the skin toward the hip is painful.
I called the surgeon to make an appointment, and they said the next opening was a month away.
I have been gentle as possible for the last few days, hoping it will heal. But today it is worse than before.
So I am wheel chair bound, or crutches when necessary. Without my prosthetic leg, my world has just gotten much smaller.
If it is still bad on Monday, I'll either go to see the Surgeon and wait, or go to the emergency room, and have them call him.
My life is so complex, and dependent on things out of my control, that I think planning anything beyond what to watch on TV tonight, is futile, and tempting fate.
I am living amongst a flock of Black Swans. All the plans I was making to visit Maddie in George, and visit friends in America, were maybe just "poking the fate bear".
--
About 4 days ago while walking in the kitchen with my prosthesis on, I got a very sharp, stabbing pain deep inside my stump. I could put no pressure on the prosthesis. I finally sat on the floor and removed the leg, then slid on my ass across to the wheel chair.
What would I have done, if I was in the States, out watching bears, or walking on the ranch?
Now 4 days later, if I grab the stump thigh gently, and pull the skin up toward the hip I get a very sharp pain deep inside the stump. I can slap and roughly massage the stump end, and all seems fine there. But moving the skin up toward the hip is excruciating. My little brain says there is damage from the end of the bone to the muscles that were cut off during the amputation. Pulling the muscles up into contact with the bone is when the pain occurs.
I have not been able to get the silicone liner on, and the thought of putting on the socket makes me cringe. The socket would be extremely painful to get on, as I would need to shove my stump down inside the socket.
When the socket is on correctly, all my weight is on the skin of the thigh. Now, even a few ounces of pressure pulling the skin toward the hip is painful.
I called the surgeon to make an appointment, and they said the next opening was a month away.
I have been gentle as possible for the last few days, hoping it will heal. But today it is worse than before.
So I am wheel chair bound, or crutches when necessary. Without my prosthetic leg, my world has just gotten much smaller.
If it is still bad on Monday, I'll either go to see the Surgeon and wait, or go to the emergency room, and have them call him.
My life is so complex, and dependent on things out of my control, that I think planning anything beyond what to watch on TV tonight, is futile, and tempting fate.
People ask what my plans are. I never planed on having cancer, and did not plan on not losing a leg. Plans, and the future are not on the same page.
--
Wednesday, 8 June 2016
June 8 2016 - A disappointing day
My prosthetic leg has been in the prosthetic hospital for a few days. I went to get it this afternoon.
I arrived at the prosthetic shop to see Bradley busy opening a box with a Total Knee 2100 in it. The knee arrived from the factory in Iceland this morning. I was looking forward to using the knee for a few weeks. The 2100 is the main athletic Knee used in the special Olympics.
Yesterday they moved the attachment point on the bottom of my socket. This means that all previous adjustments are lost. They had to re carbon fiber the attachment point.
Today for the first time Bradley got to try out his new computerized painting machine. The machine painted the Texas flag on my prosthesis. It was bright and clear.
Then they applied the last coat of clear plastic sealant, and the colors all faded and blurred. :-(
Then they had to cut the holes in the socket to allow the inside liner to stretch in the spots that give me the most trouble. Cutting the holes made the flag not look a flag anymore :-(
I put the leg on, and tried to walk. After a few steps, one of the fittings came loose. I was between the parallel bars, so I didn't fall. They replaced the faulty part, and I walked again. Soon the same fitting came loose again.
I now have a new fear, of something coming loose on the leg while I am using it. It made the leg instantly, totally, unstable, and almost guarantees a fall. If I was walking fast, I could get hurt bad.
The part that the suspect part connected to was the actual faulty part. They finally got the parts working, but the leg just wouldn't adjust properly. It felt all wrong.
Next we tried to get the 2100 knee adjusted, but it was not possible. After way too long messing with it we found out that it had no hydraulic fluid in it. From the factory, with no fluid in it! GRRRR!!!!
So we had to put the 2000 Knee that I have been using back on. It was loaned for 2 weeks, which was up today. My Mauch Knee is still in Iceland for repairs.
Fortunately, Bradley was able to keep the 2000 knee as a loaner for another week. After that I don't know what I'll do.
We worked adjusting the 2000 until way after closing time, but never got it right.
We both feel that the new position where the knee attaches to the socket is at the wrong angle. This whole adjustment thing sounds like a screwed up way of doing things. The angle has to be +1 to -2 degrees. That is a very fine adjustment. It seems silly to get this adjusted to within a degree, the go walk on a sloped road, or on uneven grass.
Bradley says we need to try a fitting that allows the real time re positioning of the place the knee attaches to the socket. He will try to get the fitting from a friend on Friday.
In between the different tests and adjustments, I got to talk to the accountant lady. She says that Medical Aid will pay a certain amount for maintenance and replacement of prosthetics. She said that maybe after 4 years I could get an up grade from the Mauch Knee. Probably to a Total Knee 2000. I reminded her that I have Angiosarcoma hanging over me, and that waiting 4 years between upgrades is probably not going to happen.
This just re-enforces my need to get to America, and sell my assets there, so I can afford to buy a better knee.
The Accountant lady also mentioned that the factory in Iceland promised again, that I can have a Rheo 3 Knee to try out for 2 weeks from the 22nd of July until the 8th of August.
I hope the factory doesn't screw that up like they did the 2100 knee.
https://www.ossur.com/prosthetic-solutions/products/dynamic-solutions/rheo-knee-3
While heading back home, I found that the new foot angle made my prosthetic foot stay under the brake pedal on the car. So pushing on the brake, doesn't move the pedal, because the foot blocks it. Normally I can push it aside, but not now. So I had to take my leg off before I could drive home.
Oh well, At least I am alive and safe for the present.
I can walk on my leg the way it is, but it sure feels unsteady.
--
I arrived at the prosthetic shop to see Bradley busy opening a box with a Total Knee 2100 in it. The knee arrived from the factory in Iceland this morning. I was looking forward to using the knee for a few weeks. The 2100 is the main athletic Knee used in the special Olympics.
Yesterday they moved the attachment point on the bottom of my socket. This means that all previous adjustments are lost. They had to re carbon fiber the attachment point.
Today for the first time Bradley got to try out his new computerized painting machine. The machine painted the Texas flag on my prosthesis. It was bright and clear.
Then they applied the last coat of clear plastic sealant, and the colors all faded and blurred. :-(
Then they had to cut the holes in the socket to allow the inside liner to stretch in the spots that give me the most trouble. Cutting the holes made the flag not look a flag anymore :-(
 |
| At least it has a Texas motif. |
I put the leg on, and tried to walk. After a few steps, one of the fittings came loose. I was between the parallel bars, so I didn't fall. They replaced the faulty part, and I walked again. Soon the same fitting came loose again.
I now have a new fear, of something coming loose on the leg while I am using it. It made the leg instantly, totally, unstable, and almost guarantees a fall. If I was walking fast, I could get hurt bad.
The part that the suspect part connected to was the actual faulty part. They finally got the parts working, but the leg just wouldn't adjust properly. It felt all wrong.
Next we tried to get the 2100 knee adjusted, but it was not possible. After way too long messing with it we found out that it had no hydraulic fluid in it. From the factory, with no fluid in it! GRRRR!!!!
So we had to put the 2000 Knee that I have been using back on. It was loaned for 2 weeks, which was up today. My Mauch Knee is still in Iceland for repairs.
Fortunately, Bradley was able to keep the 2000 knee as a loaner for another week. After that I don't know what I'll do.
We worked adjusting the 2000 until way after closing time, but never got it right.
We both feel that the new position where the knee attaches to the socket is at the wrong angle. This whole adjustment thing sounds like a screwed up way of doing things. The angle has to be +1 to -2 degrees. That is a very fine adjustment. It seems silly to get this adjusted to within a degree, the go walk on a sloped road, or on uneven grass.
Bradley says we need to try a fitting that allows the real time re positioning of the place the knee attaches to the socket. He will try to get the fitting from a friend on Friday.
In between the different tests and adjustments, I got to talk to the accountant lady. She says that Medical Aid will pay a certain amount for maintenance and replacement of prosthetics. She said that maybe after 4 years I could get an up grade from the Mauch Knee. Probably to a Total Knee 2000. I reminded her that I have Angiosarcoma hanging over me, and that waiting 4 years between upgrades is probably not going to happen.
This just re-enforces my need to get to America, and sell my assets there, so I can afford to buy a better knee.
The Accountant lady also mentioned that the factory in Iceland promised again, that I can have a Rheo 3 Knee to try out for 2 weeks from the 22nd of July until the 8th of August.
I hope the factory doesn't screw that up like they did the 2100 knee.
https://www.ossur.com/prosthetic-solutions/products/dynamic-solutions/rheo-knee-3
While heading back home, I found that the new foot angle made my prosthetic foot stay under the brake pedal on the car. So pushing on the brake, doesn't move the pedal, because the foot blocks it. Normally I can push it aside, but not now. So I had to take my leg off before I could drive home.
Oh well, At least I am alive and safe for the present.
I can walk on my leg the way it is, but it sure feels unsteady.
--
Tuesday, 7 June 2016
June 7 2016 - Life update, and prosthesis update.
Ten days since last blog.
Four of those days were at the prosthesis shop getting my socket reworked. My socket problems are now getting almost trivial. I am not concerned with walking, but concerned with walking fast for 5 km. A very small miss fitting of the socket while moving around the kitchen, can becomes a major problem when walking 5 km.
Last Saturday I did another Park Run. I finished in 1hr 24min. That is about a 25% improvement from the run a week before. At that rate of improvement, I will break the sound barrier in just under 6 months. (26 weeks)
At the prosthetic shop I met a man with a left leg, above the knee, amputation. He lost his leg 5 years ago. He spent one year on a Mauch Knee, one year on a Total Knee 2000, and now uses a bionic Rheo Knee. I asked him a ton of questions in just a few minutes.
He is about 30 years old, and a livestock auctioneer. He spends 5 days a week walking among cattle, sheep and pigs. He is on his feet the whole day. He says the bionic knee changed his life even more than when he got his first prosthetic leg. He says the bionic leg doesn't even need thinking about. He puts it on in the morning, and next thinks about it that night when he takes it off. He said to "Don't try one unless you have cash to buy one."
The hardest thing for him was walking up and down the many ramps. Herding cattle into trucks and out of truck into pens. He said that ramps are shit things, literally. With the Total knee 2000 and the Mauch knee he battled. With the Bionic Rheo Knee he doesn't even think about them.
One thing you have to understand about prosthetics, is the "K" rating. Medical aid societies had to have a way of grading the potential for an amputee to use the prosthesis. They don't want to pay for a super expensive prosthesis, that will only live in the closet. They developed the K rating to describe an amputees mobility potential.
K1 - Inside the house, usually with a walking aid.
K2 - Slow walking around the neighbor hood, and ability to navigate small obstacles like curbs.
K3 - Long walking, and ability to go up and down stairs, usually step over step.
K4 - Athletics. Like Running, or Tennis.
If you are a K1, then the medical aid will not buy you a super running knee.
I am a K3.
The livestock auctioneer is a K2. The Bionic Rheo Knee is for K2 amputees. It is not an athletic knee. No bionic knees are rated for K3 or K4.
The Total Knee 2000 I am using now is a K3 Knee. The Mauch knee is a K2/K3 knee. There are very few K4 knees.
The K rating does not mean it is a better knee, or costs more. But it signifies usage. A K4 knee may be a problem in the kitchen because it needs to break loose easy and quick. Not very stable when reaching for a cup of coffee.
Of course, the best would be to have many legs, for different purposes. A K2 leg for weekend bar-b-ques or office work, and a K4 leg for sports.
The auctioneer still uses his old Mauch Knee leg when he goes Bass fishing.
He isn't on Medical Aid, but has a rich father. The Bionic Knee cost almost 5 times what the Total knee 2000 cost him, and that was much more than the Mauch Knee.
I took my leg in yesterday. I am legless today and tomorrow. They are doing many mods to the leg. They are cutting holes in the socket. They put the socket in a laser scan machine, and it finds stress paths. Where there is no stress, they will cut holes. I think there will be 4 holes cut. Each about the size of my fist.
Since this socket has a thick silicone liner in it, the stump will be able to expand where the holes are cut. this will allow me to wear the leg much better in the morning when the stump is still swollen a bit. Now it takes 1 to 2 hours until my stump will fit all the way into the socket. Only then can I walk without limping. The holes should also reduce the chance of "hot spot" pressure points that may cause blisters.
They are re positioning the pylon attachment point to bring my feet closer together while standing. The closer my feet are, to my center of gravity while walking, means much less wasted energy.
My prosthetist found a used Total Knee 2100, and he will put it on, and let me use it for 2 weeks. :-) The Total Knee 2100 is an upgraded Total Knee 2000. It has larger hydraulics, and more adjustments. It is a K4 leg. Many of the special Olympic runners use a Total Knee 2100.
The best news is that Ossur will loan me a Bionic Rheo Knee. We will put it on in 2 weeks when the Total Knee 2100 comes off.
I would love a K2 bionic knee for going shopping, or trips to the mall. But I need a K3 or K4 knee for Park Runs.
In the back of my mind is the selling of my house in Texas, and the RV in Florida, so I can buy a good knee.
--
Four of those days were at the prosthesis shop getting my socket reworked. My socket problems are now getting almost trivial. I am not concerned with walking, but concerned with walking fast for 5 km. A very small miss fitting of the socket while moving around the kitchen, can becomes a major problem when walking 5 km.
Last Saturday I did another Park Run. I finished in 1hr 24min. That is about a 25% improvement from the run a week before. At that rate of improvement, I will break the sound barrier in just under 6 months. (26 weeks)
At the prosthetic shop I met a man with a left leg, above the knee, amputation. He lost his leg 5 years ago. He spent one year on a Mauch Knee, one year on a Total Knee 2000, and now uses a bionic Rheo Knee. I asked him a ton of questions in just a few minutes.
He is about 30 years old, and a livestock auctioneer. He spends 5 days a week walking among cattle, sheep and pigs. He is on his feet the whole day. He says the bionic knee changed his life even more than when he got his first prosthetic leg. He says the bionic leg doesn't even need thinking about. He puts it on in the morning, and next thinks about it that night when he takes it off. He said to "Don't try one unless you have cash to buy one."
The hardest thing for him was walking up and down the many ramps. Herding cattle into trucks and out of truck into pens. He said that ramps are shit things, literally. With the Total knee 2000 and the Mauch knee he battled. With the Bionic Rheo Knee he doesn't even think about them.
One thing you have to understand about prosthetics, is the "K" rating. Medical aid societies had to have a way of grading the potential for an amputee to use the prosthesis. They don't want to pay for a super expensive prosthesis, that will only live in the closet. They developed the K rating to describe an amputees mobility potential.
K1 - Inside the house, usually with a walking aid.
K2 - Slow walking around the neighbor hood, and ability to navigate small obstacles like curbs.
K3 - Long walking, and ability to go up and down stairs, usually step over step.
K4 - Athletics. Like Running, or Tennis.
If you are a K1, then the medical aid will not buy you a super running knee.
I am a K3.
The livestock auctioneer is a K2. The Bionic Rheo Knee is for K2 amputees. It is not an athletic knee. No bionic knees are rated for K3 or K4.
The Total Knee 2000 I am using now is a K3 Knee. The Mauch knee is a K2/K3 knee. There are very few K4 knees.
The K rating does not mean it is a better knee, or costs more. But it signifies usage. A K4 knee may be a problem in the kitchen because it needs to break loose easy and quick. Not very stable when reaching for a cup of coffee.
Of course, the best would be to have many legs, for different purposes. A K2 leg for weekend bar-b-ques or office work, and a K4 leg for sports.
The auctioneer still uses his old Mauch Knee leg when he goes Bass fishing.
He isn't on Medical Aid, but has a rich father. The Bionic Knee cost almost 5 times what the Total knee 2000 cost him, and that was much more than the Mauch Knee.
I took my leg in yesterday. I am legless today and tomorrow. They are doing many mods to the leg. They are cutting holes in the socket. They put the socket in a laser scan machine, and it finds stress paths. Where there is no stress, they will cut holes. I think there will be 4 holes cut. Each about the size of my fist.
Since this socket has a thick silicone liner in it, the stump will be able to expand where the holes are cut. this will allow me to wear the leg much better in the morning when the stump is still swollen a bit. Now it takes 1 to 2 hours until my stump will fit all the way into the socket. Only then can I walk without limping. The holes should also reduce the chance of "hot spot" pressure points that may cause blisters.
They are re positioning the pylon attachment point to bring my feet closer together while standing. The closer my feet are, to my center of gravity while walking, means much less wasted energy.
My prosthetist found a used Total Knee 2100, and he will put it on, and let me use it for 2 weeks. :-) The Total Knee 2100 is an upgraded Total Knee 2000. It has larger hydraulics, and more adjustments. It is a K4 leg. Many of the special Olympic runners use a Total Knee 2100.
The best news is that Ossur will loan me a Bionic Rheo Knee. We will put it on in 2 weeks when the Total Knee 2100 comes off.
I would love a K2 bionic knee for going shopping, or trips to the mall. But I need a K3 or K4 knee for Park Runs.
In the back of my mind is the selling of my house in Texas, and the RV in Florida, so I can buy a good knee.
--
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