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Dec 13, 2018 · Walking without a hip joint in Bones, Joints & Muscles

@jbro my first surgery was an emergency surgery done by a local doctor and not the specialist I had originally consulted with. The specialist and I were not planning any surgery because my bones weren't healing (radiation damaged) and felt any surgery was a high risk for infection. So we didn't discuss the options you mention. I already had an advanced infection at my first surgery.

Nov 18, 2018 · Walking without a hip joint in Bones, Joints & Muscles

@jbro

I've had four surgeries, but never had a hip replacement hardware. I had broken bones that would not heal (radiation damage) that got infected. The last surgery was on 04/2017 removing some more bone from the top of my left femur (girdlestone) and removing the front part of my pelvic bone (due to infection). Note that this surgery was way more drastic than a regular girdlestone surgery. It was my fourth surgery, removed lots of bone, and I had a problem with the femoral artery, so I ended up with three large incisions instead of one. My muscles are finally getting stronger, but without the bones in there, my hip area is definitely unstable. Also since part of my pelvic bone was removed, my muscles don't work like they used to–the underlying framework is gone. A couple of times, I've tried to do too much physically which resulted in a terrible muscle spasm in my hip and thigh with pain that lasted for weeks. I need to learn to be more gentle with my efforts to recover.

My bones will not fuse together as they might for some people–they are too far apart. I think the scar tissue will continue to form in there which will add more stability over time. I've gotten a lot stronger since January of this year.

I am currently not able to walk without some external support. I am able to use crutches for short distances, but prefer a rolling walker as it is more stable and I can sit when I get tired. After the last surgery, it took several months before I was able to walk with a rollator. I was using a wheelchair until then. A few more months before I was strong enough to use the crutches. Now I am able to go up one step (or a curb) with both the crutches and the rollator. I have been able to go up a few steps at a time with a sturdy handrail on one side and a crutch on the other side. I avoid stairs. I don't walk very far with crutches. I can walk much farther and faster with a rollator. I am hoping one day to be able to walk short distances with a cane or one crutch, but I don't know if I will ever be able to walk unassisted again. I have difficulty just standing in one place for more than a few seconds.

My left leg is about 2.5 inches shorter than the right. I had the sole modified on my left shoe to add 1.5 inches. It makes walking and standing easier.

I use pillows when I sleep to help support my hip. I don't recall being immobilized after surgery. They used foam blocks on one side just for support. I use a leg lifter to get my leg in bed. It's a long stick with a loop at the end. I have to use my hands to reposition my leg sometimes or roll over in bed. I have to lift my leg with my hands into my car. I would not be able to drive a stick shift–I have an automatic transmission in my car.

I take Doxycycline forever to help prevent infection from flaring up. When I went off the antibiotics the last time, I had an infection within a month and was back in emergency surgery. They call it suppression therapy.

I definitely have less pain after the broken and infected bones were removed. But it took a few months to feel better because I had such a big surgery.

Whatever PT they give you, do it. It helps strengthen the muscles you need to walk. You can do it! The body is an amazing thing!

Oct 9, 2017 · Walking without a hip joint in Bones, Joints & Muscles

PS. They’ve mentioned amputation to me as well, but not because of infection, because of a damaged femoral artery. Not fun to think about that. 🙁

Oct 9, 2017 · Walking without a hip joint in Bones, Joints & Muscles

Wow! You have been through a lot. I’ve had 4 surgeries in the past year. A few PICC lines. One spacer. One of the surgeries was to remove pelvic and femur bones because my doctor thought the infection was in the bone, which is why it came back. Anyway, the antibiotics I used were vancomycin (IV) until I had a severe allergic reaction, then they switched me to daptomycin (also IV). After a few weeks of that I switched to oral doxycycline which I am to take forever. Suppression therapy they call it. It took about 5 months after the last surgery for the hip wound to heal and stop draining. After the 3rd surgery they used a wound vac to help it heal, but I don’t think it really did that much after a certain point. Probably because there was still infection. I hope you get some resolution to the infection.

Aug 3, 2017 · Chronic Pain members - Welcome, please introduce yourself in Spine Health

I have slight scoliosis and spondylolisthesis (slipped vertebra) that causes nerve pain in my feet.

Aug 2, 2017 · Anyone here dealing with peripheral neuropathy? in Neuropathy

You can order them online. For example Charlotte’s Web makes them and can shop to all 50 states. Google “Charlotte’s Web”.

Aug 2, 2017 · Chronic Pain members - Welcome, please introduce yourself in Spine Health

I take magnesium for cramping and r-alpha lipoic acid for nerve pain.

Aug 2, 2017 · Lymphedema in legs in Heart & Blood Health

@mariwy59. I am sorry you are having such terrible pain. I have lymphedema in my left leg from missing lymph nodes. My pain increases with the amount of swelling, so I am motivated to try and keep the swelling down. It is time-consuming and sometimes frustrating to manage it. After every surgery it gets worse. After the last surgery, my leg was so swollen I couldn’t bend my knee and my toes were like sausages.

When I was first diagnosed, I went to a specialist that did manual lymph massage and then wrapped my leg toe-to-hip with short stretch bandages. They look like ace bandages, but don’t stretch as much. I had to keep those on all the time for a couple of weeks.

Always use a protective liner under the bandages as they are tough on your skin. I also love the “It Stays” body adhesive for keeping the liner in place on my leg. The wraps/liner tends to slide down over time.

After some of the fluid was forced up out of my leg, I was able to wear over-the-counter compression hose during the day, and wrap my leg at night.

My insurance paid for a graduated compression pump. This pump has been the most helpful for me. There is a long leg sleeve kind of like a blood pressure cuff, but it covers my whole leg. The sleeve fills up with air starting at the toe and gradually going up to the hip. Then the air is released. This forces the fluid up out of my leg and into areas where there are more lymph nodes. I wear this at night while watching TV, then when the swelling is really bad, I wrap my leg for the night, then I wear support hose every day. I even take my pump to the hospital when I’ve gone for surgery because both of my legs get really bad then. I rotate it from one leg to the other. One nurse didn’t know what it was and said she was going to need a doctor’s permission before she would let me use it. I said. “You just try and take it away fom me. You will have a fight on your hands.” Haha. That’s how much it helps me. I already had my surgeon’s permission to use it.

I did not find the massage helped me much.

I think you would need the assistance of a special PT to get a leg pump to fit you. I’ve been using mine for over 10 years and it still works great. You can get different lengths and sizes of sleeve for different body parts, too. I’ve googled my setup, and the machine with full leg sleeve was about $1200 (insurance paid for it). Mine has two “ports” so you could treat two legs at once, but I don’t do that. Just google “compression pump lymphedema” and you will find tons of information and prices. I think you could get a setup for much less than what mine cost.

I have not had good luck getting my insurance to pay for the support hose or bandages. I recently got them to pay for my nephrostomy bandages. My doctor wrote a prescription, and my home health nurse submitted them to Shield. Now that I know a company that works with my insurance, I’ll see if they stock lymphedema supplies. I buy everything online and search every time for the best price.

It gets expensive. The cheapest I have found is Jobst Relief, but they are not attractive. It seems like the price is the same everywhere. I like the thigh-high ones with the silicone dots to keep them up. I have also tried the kind without silicone and use the body adhesive to keep them up. Sometimes the silicone irritates my skin. I don’t like the ones with silicon stripes as they tend to roll down and not stay up. You can buy support hose that are attractive. I have some of those, too, to wear (rarely) with a skirt. I also like the open (vs. closed) toe for most days, especially summer. You can also get petite length, but you really have to shop around to find them. You can also get panty hose, but I think they would be so hard to put on. Use some cheap rubber garden gloves to help putting them on.

You can buy a kit for the wrapping that includes all the right supplies, but you need someone to teach you (or a family member) how to wrap as there is a special technique. As I have done this over the years, I’ve learned how to wrap with just a liner, body adhesive, bandages, and paper tape to hold the bandages in place. The kits also come with a cotton padding, which I rarely use. I don’t have to wrap my toes now either. That takes a while.

I am not sure that if you have vascular edema if the process is the same. People with heart problems have vascular edema. Maybe someone here knows about that. I think common treatments include lasix pills to reduce fluid retention and, keeping the limb elevated, and support hose. I don’t know about the pump.

Sometimes I use aspercreme with lidocaine on the skin where it hurts the worst.

Let me know if you have other questions. I think I’ve tried or investigated everything. Haha

I hope you can find some relief.