Oct 9 2016 - Donning, an Air Bladder Socket

My newest socket has air bladders in it It is great, but takes some getting used to. I designed and built the air bladder part myself.

I went to Bradley to see if he had any air bladders that I could put between the flexible liner, and the fiber glass socket. He had some cool air bladders. They are about 2 inches by 4 inches. (5 cm by 10 cm).
I got 2 of them. Each comes with a valve to trap the air pressure, and a pump.

Here is what the bladders look like.

The bladders are supposed to take 100 kg (220 pds) of force on them when full of air.
It is not easy to see on the picture, but the one end of each bladder is double the thickness of the other end.
I only have only one pump, but the pump attaches to the bladder with a quick fitting adapter, so I can carry the pump in my bag rather than on the leg.

During the construction and designing, I had many failures :-)
DON'T do it like this :-)

If you remember earlier this year, I was complaining about it taking 10 minutes to put my leg on. It now takes much, longer, and requires more parts and accessories. But it doesn't hurt. That is vital and SSOOOO important.

Here is my morning procedure:

1. Take off the stump compression sock that I sleep in.

2. Put on part of a lady's large pair of tights. I had to cut away most of them. Their purpose is to stop my pubic hairs from getting pulled by the silicone liner. I tried shaving, but the stubble was worse than the hair being pulled out.

3. Next I smear glycerin over the end of my stump. This is to ensure that the silicone liner does not pull the skin on the stump end. Any pressure or force on the stump end is painful.

4. Now I liberally spray a mixture of alcohol, glycerin, and distilled water into the inside out silicone liner. This makes it easier to roll the silicone liner onto the stump.

5. Gently roll the liner onto the stump. I have to be very careful doing this. Any time I pull the liner toward my hip it hurts.

6. Now the liner is on, and the top part is over a part of the tights. The liner has small silicone ridges around it, down the length. On my last few sockets, these would form a seal for the vacuum in the lower part of the socket. This socket with the variable volume, caused by the inflatable air bladders is unable to form a vacuum seal with these small ridges.

7. Put on a sealing ring.

8. Now I put on a thick wool stocking on the top part of my stump because the top part is not adjustable using the bladders. The bladders only are on the bottom part of the stump, but not near the end of the stump. I need a little more security at the top part, so I put on a thick sock. I make sure the vacuum seal will not be broken by the wool sock.

9. Now I inspect the hoses, valves, and bladders. The bladders need to be fully deflated. I have replaced the metal hose clamps with Velcro. The Velcro strap wraps around the socket 4 times.

10. I now tuck the hoses out of the way, and get the valves in a place where I can reach them when the socket is on the stump.

11. Now I inspect all the pieces of foam I have inserted between the flexible liner and the socket shell. These will put pressure where I can not put the air bladders. I use 3 types of foam. They are color coded by compress-ability. White, Red, and Blue.

12. Now I liberally spray the inside of the socket with the same spray I used to put the silicone liner on. With out lubrication, the sealing ring will not slide against the inner flexible socket liner.

13. Now spray the sealing ring, and the whole silicone liner to make it slide easily into the socket.

14. Put the stump into the socket.

15. Push, shove, and bounce to get the stump down as far as possible into the socket. This is the part that scares me most. Any friction causes the silicone liner to try to move up the stump, and forces against the end of the stump. This can be very painful. It is pushing HARD, but gently. Duh!

16.   When the stump is as far in as I can push it, it is still not in far enough. This is a bad time, because since the stump isn't far enough into the socket, the leg is way too long, and not steady or supported well. Walking is very difficult.

17. After about 30 minutes of bouncing and walking around the kitchen, the stump is far enough into the socket.

18.  I check by sticking my finger in the vacuum valve hole. This way I can feel exactly how far the stump is into the socket.

19. Now to attach the pump to the bladder and pump. The bladders push securely on the sides of my thigh, and hold the femur very tight. The Proprioception increases dramatically. I can feel every movement of the foot.

20. Now I struggle and battle, to get my shorts on. Then I wait for my Buddy to drive up and take me to lunch. :-)

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One of my readers sent me the links to some interesting sites about bionics. Cool stuff.

http://www.cybathlon.ethz.ch/en/

https://www.youtube.com/channel/UCqGx-eUykZLDKjjrwRhfilQ/feed

Thanks for that. :-)

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Aug 24 2016 - Exercises and crutching

21:45
I am in a very lackadaisical mood. I don't know why, and I can't blame drugs.

 I am doing a good series of exercises for all stump muscles and range of movement of the stump. Trying to get the stump muscles and skin stretched so not to cause pressure on the sore spot.
My brother mentioned shoulder exercises to strengthen my shoulder so I could use the crutches better. I used some old weights laying around and did five sets of right shoulder exercises. Then I tried the left side. I couldn't even do one set. My left arm and shoulder are so weak. I was shocked.
At first I thought I must have had a small stroke, and didn't know it. Then I started noticing how many actions around the house use my right arm. The toilet grab bars use the right arm. The bed brace for getting in and out of bed is also right arm. I don't ever seem to use the left arm. Now I have added shoulder exercises to my daily routines.

I have been trying to "invent" a way of getting the silicone liner on without pain.
My latest invention is a string of round beads on a piece of wire. The two ends of the wire are held together with a rubber band. I put the liner against the stump end, then insert the beads against the inside of the liner. When I pull the liner, it rolls over the beads. It causes much less pain, but still not near zero pain.
Next I want to make a tube, of PVC that the liner is stretched over, and when the liner/tube is put over the stump, the tube takes all the strain, and the liner is then slid off the tube onto the stump.
So today I went shopping for a 185mm PVC pipe. All PVC pipes are 160mm or 200mm. One plumbing place gave me  great deal in 1 meter of 160mm PVC pipe. I bought it, even though it is a bit to tight. The only 200mm pipe was sold in 4 meter lengths. R600. Shriek!

I got very tired crutching around. I was being very gentile on my shoulder, and that was hard work.
I went to a hamburger place for lunch, and just sat in the car. The hassle of crutching into the restaurant was not worth the getting to eat. I finally just drove away.
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Aug 17 2016 - MRI results, and getting up from a fall

09:00
After my success in getting up from my wheelchair without using my hands, I decided it was time to learn to get up from the floor without using any aids.
I have been healing from an internal stump pain for the last 8 weeks. During this time I have been doing exercises to strengthen and stretch parts of my body that will assist my one leg lifestyle.

I have been able to get up after falling by using my cane reduced to it's shortest length, (about 18 inches) or by climbing up something or someone. A strong kitchen chair seems to be the best and most sturdy getting up aid. Lately with my sore shoulder, getting up with the cane is not possible.

I am hoping that much of my stump pain can be relieved if the muscles in the stump are stretched more, so to be not as tight. Being not as tight, means they should be less likely to strain or tear. So I have been on the floor doing lots stretches and flexibility exercises.
I do a set of basic stretches every morning, but I am now doing much more, and doing it twice a day. While I don't see or feel any immediate benefit from this extra stretching, I also don't think it can, in any way, be a bad thing.
Having a more stretched hamstring in my good leg, allows me to have the leg straighter when I am bent over at the waist.

 I do my teeth brushing in a semi squat position. When I am done, the good leg thigh muscle is screaming and burning. While washing dishes I do the same. This now allows a one leg, deeper squat position than I have ever had.

The combination of these two exercises, means if I am on the floor, I can get up by my self. The secret is to get in the position like I am on starting blocks. The good foot behind with toes bent.  Sort of like being on all fours, except there are only three, so I am on all threes.
Then I push my bum up in the air so my third point is now my foot, not the knee. Then I slowly walk my hands back toward the foot. Soon I can stand up. My balance is not so good, so it helps if there is something to grab, or fall onto.

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11:30
I just talked to the surgeon. He looked at the MRI and the blood test results.
The blood test show no signs of gout.
The MRI is pretty conclusive.
Myositis Ossificans.
That is normally caused by a broken or damaged bone, and muscle injury. I think amputation qualifies as both.
There is excessive calcium present where the bone is healing. Some of this calcium can sneak into a damaged muscle, and start growing. It is slow to grow, sometimes 4 to 6 months. This bone growing inside the muscle causes pain in the muscle.
The "cure" is exercise, and drugs. I currently spend about an hour a day doing stretches and exercising the stump and core muscles. I can't see any increase in exercises helping much. I am close to overdoing it as it is.

There are drugs that help to break up the small bone growing in the muscle. Also stronger anti-inflammatory drugs. The doctor sent the prescription to my phone. He says the pharmacy will accept that, and issue the drugs. There "should" be noticeable results within 4 weeks. I'll go see him again in a month.

I still can't use the crutches because of my shoulder. I don't know how I will get these drugs.
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12:30
I tried calling the pharmacy to get the email address, so I can email the prescription.
I could not even tell what language the person on the phone at the pharmacy was speaking. It sounded like Zulu, so she was probably spelling the email address in phonetic Zulu. I would have had better luck if she had been using Arabic, or Mandarin.
Three phone calls, stress, bullshit, hassle, and I am still no closer to getting my pills.
My life is now complex, for what used to be simple things. This sucks.
My buddy says he will come by and fetch the drugs from the pharmacy. But it would be a huge inconvenience for him. The pharmacy will deliver in 5 days, but only if I can send the prescription.
I called the pharmacy help line. After 5 minutes of listening to computer music, the computer told me to call back later. Grrr.
I called the pharmacy AGAIN, and asked to speak to an English speaker. This time I got someone that speaks English better than I do.  She was very helpful and said they would deliver everything for free right after lunch.
Solved.......Maybe
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16:44
A scooter just drove up with my medicine.
When the system works, it is fantastic.
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Aug 15 2016 - Doctor visits....Again, and an MRI

10 Aug --

I'm just back from a lot of running around.
I crutched a lot today, and my left shoulder is complaining.

First to Bradley's. We chatted lots, and decided that anything we do now may be good for learning about making sockets, but not so good for getting me walking.
This stupid pain MUST stop first. I wore the liner all day yesterday, but after showering this morning, I could not get it back on because of the pain.
We talked about the Paralympics, and the latest prosthesis inventions and techniques. We think alike in a lot of ways. He says the problem isn't building a prosthesis for me, but building the best prosthesis possible within the constraints of pain and comfort.

Next I went to the Pharmacy to get some pantyhose. The nylon stockings I wear now start rolling down my stump, and then form a tourniquet. So I am thinking maybe pantyhose and cut out the crotch and the right leg, and leave only the stump and waist. That way it shouldn't roll down any.
When I got to the pharmacy, I didn't have a clue about pantyhose, so I found the most fashionable white lady there and asked her to help me chose pantyhose. The chosen lady was very nice and we chatted for about 10 minutes. She said I would be better off going to Woolworth's, and buying woman's tights. The closest thing at the pharmacy was pantyhose, but they are thin and wouldn't last long with me using them. They had some long underwear that might have worked, but too much $$.

Then to the Hospital for lunch at the cafe. I had a Feta and Spinach trammazine. Then I went to the surgeons office, and got an appointment for Monday. Since this stupid pain is not going away, I think he may have to go in and see what the problem is. I dread that something fierce.

Then 14:30 for the Oncologist lady. She says that the blood report showed phosphates, which the kidneys should remove. My kidneys took strain with the chemo and drugs.The normal limit is .75 to 1.2. Mine was 1.23. She said that she is glad that it is so low after chemo. Some of her patients after three months have 5 to 6 phosphate. She says that the phosphate level is high, but so much lower than she expected. Everything else was good. She poked all my lymph glands. No pain at all. She made an appointment for 8 November. X-rays and scans. Also another blood test.

Then to Woolworth's. I saw some customer ladies standing around chatting. Customer ladies are usually much more knowledgeable than the store staff, and friendlier to talk with. I asked them if they could help my select tights or pantyhose. They all suggested tights. Tights are supposed to last longer, and they don't fray as easily after cutting. They said to smear silicone or fingernail polish where I cut them, to stop fraying. I bought a pair of Ladies large black tights.

At home I just tried on the tights. I might not need to cut them. they are quite comfortable. Of course to pee is a big deal. I mainly wanted them to stop my compression stockings from rolling down.
My shoulder needs a rest. Crutching hurts it.
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15 Aug --
Today was a visit to the surgeon. This pain in the stump has only got about 10% less in the 63 days since the stump pain happened. I have been without the prosthesis all that time. At this rate, I will be wheelchair bound my whole life.
 He poked, twisted, and pushed all over my stump to identify where the sore areas were. He narrowed it down to the area between the stump end, and the bone end. Right where we knew it was. Nothing learned from that.
He said that because of the denseness of a stump, it is impossible to use less invasive surgery to work in there. He said it requires a major opening, similar to the original surgery. He wants to avoid that at all costs. So do I.
 Without something definite to fix, he would be wasting time cutting. The only thing that indicates something is wrong, is me saying I have pain. We have done x-rays, sonograms, and we have the results of the old PET scan and an old CT scan.  There seems to be no physical reason for the pain.
He prescribed another blood test. This one for gout. Gout sometimes forms in stump ends.
He also told me to get an MRI of the stump.

I crutched to the MRI place to book an appointment. The ladies there were very nice. They said they are booked so solid it would be weeks till they could squeeze me in. Unless I did it tonight. There is a doctor that examines the MRI as it is done. He approves the MRI, or orders it redone.  The MRI place is getting a new MRI Doctor. He and the old doctor will be there training tonight.
 I said yes, I will wait almost 3 hours till their day is done. Meanwhile, I went and did the blood test. My shoulder was limiting my mobility on the crutches.
I started the MRI at about 17:30 and I was in that stupid machine for over an hour.  Near the end, the Doctor said to the nurse to now include my spine, in case the pain is a spine related pain like sciatica. Good thinking that.
After that was done, the doctor ordered a shot. That shot hurt, and then back in the machine. The shot was to emphasize any cancer tumors that may be growing in the stump between the bone and the stump end.
I hadn't thought of that. Scary stuff.
At the end I asked if they saw any tumors. They said they are not allowed to talk about the MRI results ever, so don't even ask. They asked the name of my oncologist, so they could send her the results in addition to the surgeon.
I'll call first thing in the morning to find out all the results from the Oncologist and the surgeon.

When I tried to leave the hospital, my shoulder was really bad. I didn't think I could crutch out to the car. Along came a porter pushing a wheelchair. I asked if he would give me a ride to the car, he said sure get in.
At home I battled to get from the car to the front door.
Pushing the wheel chair is even hard on my shoulder.

I have ordered online food shopping. The food should be delivered tomorrow at 14:00. Good thing I did that, I could not go shopping with this shoulder.
It looks like another few days of wheelchair, and playing computer games.
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July 14 201 - Stump trouble, and a visit to Maddie

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.
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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
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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.
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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.

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.

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".
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