Walking without a hip joint

Having read many of the experiences recorded here, I thought it might be of interest to share my journey on this forum, and give some hope to others, who are struggling with life without a hip.

In 2016 I was diagnosed with primary bone cancer and needed drastic and life changing surgery. I underwent a T1/ T2/ T3 internal hemipelvectomy in order to remove the cancer from my hip, pelvis and acetabulum. In addition, an osteotomy was performed on my right femur to prevent the pistoning of the femoral head into organs in my abdomen. Reconstruction was not recommended, or undertaken, by my surgical team, due to the extensive post operative bone deficit and lack of anchor points.

I was told that I would either need two crutches to mobilise or a wheelchair after the surgery but I really wanted to be able to walk again in a more normal fashion. However, and despite our extensive and very expensive efforts working with leading prosthetic and orthotics companies, we concluded that there was nothing available to help me. Then Covid came along and so my husband decided to see if he could make one - as the saying goes …how hard can it be?

Almost 3 years on and we have developed what we believe to be the world’s first ‘full bodyweight offloading exoskeleton brace’, which we have recently demonstrated to leading orthopaedic surgeons in the UK and Germany, who have all been amazed as to how it works and how well I can walk.

The brace is a prototype and to others may look slightly uncomfortable, but the reality is that it is incredibly supportive and comfortable. It actually feels more strange when I take it off !

The brace allows me to walk and exercise in a much more productive way than I could achieve previously. It also allows a degree of freedom that I had only dreamt of. It allows me to fully weight bear on my bad leg, allowing for a very normal walking gait AND it protects my back and spine from unnatural loading.

The brace feels very natural and I can stand for hours…without it my foot on my good leg would be complaining after about 10 minutes of being stood up. During the summer I regularly walked over a mile in the brace with one crutch without ill effects…which given I have no hip at all or even any pelvic structure on my right side is a huge benefit to me. Without the brace this would be impossible.

Just recently we have developed it to the stage where I can walk on my own with no crutches.

The brace is we believe a unique design and is bespoke. It is custom fitted and involved me being 3D scanned, with the main elements of the brace being made of carbon fibre and 3D printed metal parts. It is entirely ‘human powered’ with no motors, electronics or servos and absolutely no surgical interventions! It has been designed to be very quick and easy to put on and can be fully fitted in about 20 seconds and removed in about 10 seconds !

We are continuing to develop it and we have a long list of ideas to try and improve it further.

Please be aware that this is a prototype, designed and built by my husband and this is the only one in existence. We have no knowledge if this will work for others.

If anybody would like further information and to see it in action then please private message me and I can direct you to a website where you can see my Xray, me walking without it and then me walking in the brace without crutches and without any pain.

I hope that this is a small ray of light in what can feel very dark and lonely days.

That’s amazing to know

I was born with a congenital hip dislocation and had 3 surgeries between the ages of 2 and 15. At the age of 26 (1985) I had a THR. There were 3 revisions, the last in 2006 at Henry Ford Hospital in Detroit. In 2013 I was admitted with sepsis, a massive mrsa infection which later mutated into visa. March 2014 the prosthesis was removed and I spent 2 1/2 years in a wheelchair and on IV antibiotics most of that time. Last summer my case was taken over by another surgeon who deemed it unwise to try another revision and we agreed. A new infectious disease doctor changed antibiotis and I am now mrsa/visa free. I have no hip and no spacers, the femur is significantly shorter, leg length difference is 3 1/2 inches. The new surgeon has me walking with walker and crutches and a 3 inch lift on my shoe. 3 months physical therapy to strengthen muscles atrophied from so much time in the wheelchair. I am about to move to one crutch, and the goal is a cane. Xrays show excellent build up of scar tissue supporting the leg. My original question was wondering if there are others having the same experience.

I was born with a congenital hip dislocation and had 3 surgeries between the ages of 2 and 15. At the age of 26 (1985) I had a THR. There were 3 revisions, the last in 2006 at Henry Ford Hospital in Detroit. In 2013 I was admitted with sepsis, a massive mrsa infection which later mutated into visa. March 2014 the prosthesis was removed and I spent 2 1/2 years in a wheelchair and on IV antibiotics most of that time. Last summer my case was taken over by another surgeon who deemed it unwise to try another revision and we agreed. A new infectious disease doctor changed antibiotis and I am now mrsa/visa free. I have no hip and no spacers, the femur is significantly shorter, leg length difference is 3 1/2 inches. The new surgeon has me walking with walker and crutches and a 3 inch lift on my shoe. 3 months physical therapy to strengthen muscles atrophied from so much time in the wheelchair. I am about to move to one crutch, and the goal is a cane. Xrays show excellent build up of scar tissue supporting the leg. My original question was wondering if there are others having the same experience.

I was born with a congenital hip dislocation and had 3 surgeries between the ages of 2 and 15. At the age of 26 (1985) I had a THR. There were 3 revisions, the last in 2006 at Henry Ford Hospital in Detroit. In 2013 I was admitted with sepsis, a massive mrsa infection which later mutated into visa. March 2014 the prosthesis was removed and I spent 2 1/2 years in a wheelchair and on IV antibiotics most of that time. Last summer my case was taken over by another surgeon who deemed it unwise to try another revision and we agreed. A new infectious disease doctor changed antibiotis and I am now mrsa/visa free. I have no hip and no spacers, the femur is significantly shorter, leg length difference is 3 1/2 inches. The new surgeon has me walking with walker and crutches and a 3 inch lift on my shoe. 3 months physical therapy to strengthen muscles atrophied from so much time in the wheelchair. I am about to move to one crutch, and the goal is a cane. Xrays show excellent build up of scar tissue supporting the leg. My original question was wondering if there are others having the same experience.

Similar history here and I had girdlestone procedure done in 2018. Have been without hip joint or replacement since then. Very ambulatory but need to use a walker. Similar leg length discrepancy. Occasionally get angry muscles especially at night or if I overdo it. Still need some t3's primarily at night. Have wore out both shoulders as a result of decades use of cane and now walker - they want to do reverse total shoulder replacement but I am leery of same - significant pain in shoulders, neck and arms.

Similar history here and I had girdlestone procedure done in 2018. Have been without hip joint or replacement since then. Very ambulatory but need to use a walker. Similar leg length discrepancy. Occasionally get angry muscles especially at night or if I overdo it. Still need some t3's primarily at night. Have wore out both shoulders as a result of decades use of cane and now walker - they want to do reverse total shoulder replacement but I am leery of same - significant pain in shoulders, neck and arms.