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.
I too will sending you a pm to get more information. You and your husband should be commended for your ingenuity and dedication.
Thanks do much for giving us hope.
Thank you. It has been a long journey and there is still alot of practise to be undertaken on my part but we have achieved more than we ever thought was possible.
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 developed Sepsis which apparently spread from my mouth to my right hip socket where I had a 12 year old replacement hip. I had that removed, so currently have no right hip.
I have recently graduated from a wheelchair to a walker. since my femur was cut, my right leg is about 2.5 inches shorter than the left, I have a custom shoe lift.
I had this operation about 9 months ago. I had 3 teeth removed and was on antibiotics until 5 months ago.
Now I feel fortunate to be alive but have to deal with my dental work. I celebrated my 80th birthday yesterday.
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.
Hello, yes both of my parents a have “hanging hip” or “floating hip” I have done a lot of research and it seems uncommon, I am a PTA and I’m trying to find the best exercises for them, especially for mom since her surgery is recent and she is battling infection right now. Many mistakes have been done since her fall, starting with a dr that decided to do a HEMI instead of a THR on an 80yo woman with an acetabulum that had osteoarthritis… anyway, lasted a year only and she was never able to walk because it was not cemented properly, the new hip prosthesis was very loose and moving inside the femur creating a million problems. She got that removed (last surgery) and now just waiting for infection to go away before a new attempt for replacement. She has been taking steps and getting out of bed and showering herself 2 weeks after surgery (surgery was done Dec 3 is now January 12) she moves around by herself with the walker, she is waiting now for her new high shoe. Dad has been without a hip for over a year and half now, he had to have nuclear medicine to kill the infection. Uses a 4.7 inch high shoe, drives stick and still goes to work, Dr is suggesting to do not attempt a new replacement because the chances of reinfection are very high and since his pelvis is basically mangled and really destroyed (5 diff surgeries prior due to accident) Dr says having a new one in it will be a terrible idea (his case should be on text book I’m telling you, he almost died on the OR, took 8 hours to remove the old prosthetic, too long to explain) Their PTs have no clue on what exercises to use so they quit PT. So, all they’ve done is move as much as they can and they pay attention to their bodies, I brought them therabands, massagers, tools, heating pads, TEN units, printed exercises, infused lotions, and more stuff to their home, I live very far from them but they listen to my instructions. I admire them immensely for not giving up because that kind of pain and struggle it’s only an idea for those who have never experienced it they way you and my parents have. All my respect to you.
All of these stories are so inspiring to me, struggling without a hip also. Mostly struggling now with depression, so hearing about you all dealing with your situations helps me feel better and astonishes me since I am 20 years younger than many of you. One of the issues we're all facing is a lack of resources, including PTs who don't know what to do with us. Would you be willing to put together your kit of goodies for me? Or give us a detailed list so perhaps we can source the items where we live? Thanks for considering, Janeen
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.
Your story moved me, especially since you're very ambulatory.
I've had two hips replaced, 1 revised and 1 year ago had a reverse shoulder replacement. The surgery was and still is painful. It affects everything from feeding yourself to unscrewing a jar! Driving is still a challenge. The entire mechanics of your arm, neck and back is changed and these are important factors I wasn't told about. PT really did nothing except rub lotion on me.
I have to be honest when I say I still have the same pain, it's just a lot harder to navigate around it now.
Wishing you the best.
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.
I can relate about the girdlestone as I've had one for 2 years now. I guess I've been fortunate so far with my shoulders and sorry you are having so much trouble with yours. My sister did have a reverse shoulder replacement and it went well for her. Sometimes it's nice to hear that surgeries can work out ok. My sister is back to swinging a golf club in Florida. Wishing you the best!
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I too will sending you a pm to get more information. You and your husband should be commended for your ingenuity and dedication.
Thanks do much for giving us hope.
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1 ReactionI could not sit, stand or walk without a hip joint. I had to wait for another surgery ON MY BACK!
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1 ReactionThank you. It has been a long journey and there is still alot of practise to be undertaken on my part but we have achieved more than we ever thought was possible.
Kind regards
Jane xx
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1 ReactionI developed Sepsis which apparently spread from my mouth to my right hip socket where I had a 12 year old replacement hip. I had that removed, so currently have no right hip.
I have recently graduated from a wheelchair to a walker. since my femur was cut, my right leg is about 2.5 inches shorter than the left, I have a custom shoe lift.
I had this operation about 9 months ago. I had 3 teeth removed and was on antibiotics until 5 months ago.
Now I feel fortunate to be alive but have to deal with my dental work. I celebrated my 80th birthday yesterday.
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4 ReactionsHello, yes both of my parents a have “hanging hip” or “floating hip” I have done a lot of research and it seems uncommon, I am a PTA and I’m trying to find the best exercises for them, especially for mom since her surgery is recent and she is battling infection right now. Many mistakes have been done since her fall, starting with a dr that decided to do a HEMI instead of a THR on an 80yo woman with an acetabulum that had osteoarthritis… anyway, lasted a year only and she was never able to walk because it was not cemented properly, the new hip prosthesis was very loose and moving inside the femur creating a million problems. She got that removed (last surgery) and now just waiting for infection to go away before a new attempt for replacement. She has been taking steps and getting out of bed and showering herself 2 weeks after surgery (surgery was done Dec 3 is now January 12) she moves around by herself with the walker, she is waiting now for her new high shoe. Dad has been without a hip for over a year and half now, he had to have nuclear medicine to kill the infection. Uses a 4.7 inch high shoe, drives stick and still goes to work, Dr is suggesting to do not attempt a new replacement because the chances of reinfection are very high and since his pelvis is basically mangled and really destroyed (5 diff surgeries prior due to accident) Dr says having a new one in it will be a terrible idea (his case should be on text book I’m telling you, he almost died on the OR, took 8 hours to remove the old prosthetic, too long to explain) Their PTs have no clue on what exercises to use so they quit PT. So, all they’ve done is move as much as they can and they pay attention to their bodies, I brought them therabands, massagers, tools, heating pads, TEN units, printed exercises, infused lotions, and more stuff to their home, I live very far from them but they listen to my instructions. I admire them immensely for not giving up because that kind of pain and struggle it’s only an idea for those who have never experienced it they way you and my parents have. All my respect to you.
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4 ReactionsAll of these stories are so inspiring to me, struggling without a hip also. Mostly struggling now with depression, so hearing about you all dealing with your situations helps me feel better and astonishes me since I am 20 years younger than many of you. One of the issues we're all facing is a lack of resources, including PTs who don't know what to do with us. Would you be willing to put together your kit of goodies for me? Or give us a detailed list so perhaps we can source the items where we live? Thanks for considering, Janeen
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5 ReactionsThese stories are inspiring to me too. They make me feel I am not alone and can persevere!
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3 ReactionsSimilar 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.
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2 ReactionsYour story moved me, especially since you're very ambulatory.
I've had two hips replaced, 1 revised and 1 year ago had a reverse shoulder replacement. The surgery was and still is painful. It affects everything from feeding yourself to unscrewing a jar! Driving is still a challenge. The entire mechanics of your arm, neck and back is changed and these are important factors I wasn't told about. PT really did nothing except rub lotion on me.
I have to be honest when I say I still have the same pain, it's just a lot harder to navigate around it now.
Wishing you the best.
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2 ReactionsI can relate about the girdlestone as I've had one for 2 years now. I guess I've been fortunate so far with my shoulders and sorry you are having so much trouble with yours. My sister did have a reverse shoulder replacement and it went well for her. Sometimes it's nice to hear that surgeries can work out ok. My sister is back to swinging a golf club in Florida. Wishing you the best!
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