Patient Stories

Patient Stories

Amputation

My experience
Rachel's story

Osseointegration has been life changing for me. I no longer dread putting on my leg in the morning and I don’t have to constantly worry about how far I have to walk. I used to be obsessed with planning how to get as close to places as possible by car so that I could minimise the distance I walked, and this took up a lot of headspace. Recently, I walked 12 miles—it was fun, I had no pain and I enjoyed the views of the countryside. The psychological change is just as significant as the physical one. I just don’t need to worry about walking anymore.

My experience
Andy's story

Since having osseointegration in 2018, I am now walking with far better posture and with much less pain compared to my experience wearing a socket. I can walk longer distances and generally walk between 3 and 5 miles per day with ease. I particularly like the feeling that the leg is mine again and not an added extra that doesn’t belong to me.

My experience
Carl's story

I describe my life now as BBA and ABA: before bone-anchor and after bone-anchor. BBA I could only manage to walk for about 30 minutes in my prosthesis and then had to rest for an hour or two because of pain due from the socket rubbing. After bone-anchor, I can walk with my prosthesis for 5-6 miles without stopping. The only reason for stopping is to take in the view. It has been life changing.

TMR

My experience
Jeff's story

38 years ago, I was involved in a motorcycle accident and lost my left arm above the elbow. In the same accident, I also suffered a severe brachial plexus injury, which left me suffering from intense PLP. Over the years, I tried everything you can think of for the pain: pregabalin, opiates, mirror therapy, hypnosis, you name it. Nothing worked. Eventually, I just learnt to live with the pain.

Unfortunately, I then developed increasing problems with severe back pain. The rehabilitation doctors said that the loss of my left arm meant that the weight across my shoulders was uneven and I had developed a significant scoliosis (twisting) of the spine. To address this, I needed to wear a heavier socket-fitted prosthesis on my left side. To make things worse, the brachial plexus injury meant that my residual limb was very sensitive when touched. So, wearing a heavier prosthesis would also mean having to suffer more pain.

I was sure that there must be a better solution and did some internet research. I discovered that a better solution to my problem might be to undergo a combined TMR and osseointegration (OI) procedure. The OI surgery would allow me to wear a heavier prosthesis and the TMR procedure would help to deal with my phantom limb pain. Surgery was not available on the NHS, so I approached the team at Relimb. They felt that I was a suitable candidate for the surgery, and we went ahead with this at the Royal Free in April 2018.

It has been 3 years since I underwent the surgery, and I am so grateful for what the team at Relimb have been able to do for me. Having the bone-anchor in place in my left arm means that I can now wear a prosthesis that is the right weight for me, without having to disturb the soft-tissues of my residual limb. As a result, my scoliosis has gone and my back pain with it.

The TMR surgery did result in significant worsening of my phantom limb pain for a few months. However, eventually, the nerves grew through and, with a lot of help from the team at Dorset Orthopaedic, I was able to regain voluntary control over the reinnervated muscles. As this happened, it suddenly felt as though my amputated left arm was back again. Over a few weeks, I suddenly noticed that the PLP was also beginning to occur less frequently and at lower intensity.

Nowadays, I don’t have any PLP at all. Since I have undergone the TMR surgery, it has also been possible to increase the number of activation sites that I can use to control my myoelectric prosthetic limb. This has improved my ability to use the prosthesis, and this has allowed me to return to the hobbies I enjoy most – like riding my motorcycle!

*Name changed to respect our patient’s privacy.

RPNI

My experience
Craig's story

I underwent surgery to fuse a joint in my index finger a few years ago. Unfortunately, the surgery didn’t quite go as planned. I developed a bad wound infection, and this meant that I had to be readmitted to hospital for intravenous antibiotics and removal of the metalwork used to fuse the joint. Eventually, the bones in my finger fused but I was left with a chronically painful finger. Even the slightest touch would trigger off waves of pins and needles, which travelled up my finger.

Eventually, I just stopped using the finger altogether when trying to carry out my daily tasks. I also had to start taking regular pain killing medications such as pregabalin and tramadol. The drugs made me sleepy and forgetful. The tramadol made me constipated.

Although I was able to accept this, it wasn’t nice, and I kept asking my original surgeon if there was something else that could be done to help. Finally, she referred me to the Relimb team for help.

After examining my finger, they diagnosed a neuroma, which was the result of a nerve being cut during the original surgery to fuse my joint. They recommended an RPNI procedure since this would stop the neuroma from being so sensitive.

The surgery was carried out under local anaesthetic. I was very apprehensive about the surgery. What if it didn’t work? What if the surgery was painful? What if it went wrong like the first operation?

Thankfully, I needn’t have worried. Within a few days, it was clear that the neuroma pain had gone and it never came back. It took about 6 months for the hypersensitivity of my finger to settle but that was OK too. By the end of 12 months, I had stopped taking the pregabalin and tramadol and I am now able to use the finger for my daily tasks. I still have a sensitive finger in cold weather, but I can live with that.

I am so grateful for the improvements to my symptoms that the team at Relimb have achieved for me.

Reconstruction

My experience
Jennifer's* story

As a result of a work-related accident, Jennifer lost her right thumb at the knuckle. She also lost all of the hair-bearing parts of her scalp and both ears. Immediately after the accident, Jennifer’s doctors placed a skin graft over the stump of the thumb and covered her scalp and ear injuries with another skin graft. Unfortunately, Jennifer’s scalp and ear grafts remained unstable and unsightly, so she wanted to explore the surgical options to improve her quality of life.

Jennifer’s case manager recommended that she visit Relimb after learning about our range of holistic services and our extensive knowledge of reconstructive plastic surgery techniques.

Jennifer met with the team and we carefully assessed her needs. We listened to Jennifer when she said she did not want an osseointegrated bone-anchor or a toe-to-hand transfer to reconstruct her missing thumb. In fact, her goals were to have a longer thumb, a stable scalp and replacements for her ears. She told us that these improvements would help her feel more confident about returning to her daily routines.

We provided Jennifer with a surgical plan to make her goals a reality:

We used a technique called distraction-lengthening of bone to create a new thumb. To allow her soft tissues to adapt to the lengthening bone, we also used tissue-expansion techniques.
We recreated the web space between Jennifer’s thumb and forefinger using a skin flap taken from her forearm.
For Jennifer’s ears, we inserted osseointegrated bone-anchors into the bone around her ear holes. These allowed high quality silicone ears (provided by our rehabilitation partners) to be attached securely.
Finally, we resurfaced her scalp with soft tissues taken from her abdomen. This removed the unstable areas of skin and allowed us to reposition her eyebrows.

*Name changed to respect our patient’s privacy

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