Another route to a CRPS cure?
Following on from our article on osseointegration, Libby Parfitt spoke to Associate Professor Munjed al Muderis to find out more about how this treatment is helping chronic pain patients. Al Muderis is at the cutting edge of osseointegration, pioneering the treatment worldwide.
What is osseointegration?
Osseointegration is a treatment for amputees, whereby a titanium implant is attached directly to the bone of the stump. This allows an artificial limb to be directly attached to the titanium, eliminating the need for a potentially painful ‘socket’ attaching to the stump. It’s great for Complex Regional Pain Syndrome sufferers who often can’t tolerate the feel of traditional prostheses due to the over-sensitization of the affected area caused by the illness.
Osseointegration has been around since the 1990s, but as al Muderis explains, the initial version didn’t catch on: “Initially, it involved a cumbersome two stage surgery, six months apart, with a very slow recovery process taking about 18 months”. There was also a problem with the first type of implants: “The original technique was based on using a screw technology, just like in dental implants, but that is a mistake because there is a lot of torsional force applied to limbs so a screw just doesn’t work.”
How has the technology evolved?
When al Muderis started performing these operations in 2010 he “changed the philosophy”, moving from the old screw fixture to “press fit implants, similar to a knee or hip replacement” and this provided a breakthrough.
By using this different type of implant, they could condense a slow and painful two-stage surgery and 18-month recuperation into a single operation and much more robust rehab, meaning that most patients would complete their rehabilitation in around 3 months. Suddenly the procedure was viable and in demand. As al Muderis explains: “The time it takes now for the patient to recover is much less and as a result of that it has picked up and become very popular. Now it’s streamlined surgery in several countries around the world including Australia.”
What about chronic pain and amputation?
Medical protocol says that you don’t amputate for CRPS. Conventional wisdom dictates that the risks of amputating a CRPS limb are simply too high: it could lead to a recurrence of CRPS in the stump, meaning that wearing a prosthesis could be impossible, or it could trigger a spread of the disease into other parts of the body. In the UK, the NHS will not generally amputate for CRPS; some people have managed to find private surgeons willing to perform the operation and have fundraised for the surgery themselves, but that is generally the only option.
Osseointegration can provide a cure for CRPS
What al Muderis says next turns the whole “don’t amputate for CRPS” narrative on its head.
He tells me that he has operated on “patients who had CRPS in the knee, I did an above knee amputation on them, their CRPS was cured and osseointegration gave them their mobility back”. It’s a staggering statement that upends received wisdom and the constant message given to all CRPS patients that amputation should never even be considered. He admits that we’re not talking big numbers, with only “a handful” treated like this so far, but the results for that handful have been extremely successful.
Al Muderis stresses that amputation and osseointegration is not the right option for everyone: “We see CRPS patients fairly regularly that don’t need amputation but can be treated conservatively. These conservative measures include rehabilitation, physiotherapy and pain medications as well as spinal cord stimulators.”
For those whose CRPS is not helped by these conservative measures, deciding on amputation and osseointegration is a considered process which involves educating and preparing the patient. Procedures like epidurals will be done before amputation is considered to check if there is a clear demarcation between affected and unaffected areas; he stresses that the inflamed area should be left alone and that any amputation should go through healthy tissue.
No recurrence of CRPS, yet…
So far, not a single CRPS patient treated with osseointegration by al Muderis has experienced a recurrence of their CRPS, but he’s realistic that it’s a constant possibility: “Not yet but never say never. So far we’ve been lucky but you never know. There is always the fear and the risk of transferring the CRPS to the area of the amputation and that risk will continue to exist with every single case we do. And if you face a person who would say that they never had a complication, that would mean they never had enough exposure or they’re lying.”
Interestingly, al Muderis believes that part of what makes osseointegration so successful for CRPS is that it occupies and redirects the nerves of the affected limb. He explains: “If you perform osseointegration you give the limb something to do and that redirects the nerves. We don’t understand the mechanism behind it, but it seems that it does reduce the effect of the CRPS“.
Are there any risks?
As with any surgery of this magnitude, there are risks. The major one is infection, but the innovation of the single stage surgery has managed to drastically drop the infection rate. For CRPS patients specifically, the risks involve recurrence or spread of the CRPS.
Where is it available?
At the moment, osseointegration doesn’t exist in the UK outside of a small trial run by the Ministry of Defence for injured ex-servicemen and women.
However, he stresses, “osseointegration is coming and it’s here to stay”. He puts the slower rate of take-up of this technology in the UK down to our naturally risk-averse society and the high burden of proof that the NHS puts on any new treatment.
Right now, UK patients who want to try osseointegration are flying to Australia for treatment by Associate Professor al Muderis, but unfortunately it comes with a hefty price tag of around £70,000 – £90,000. It’s an amount of money that is out of reach to most of us, but there are many people out there living with CRPS who would give literally anything for a cure.
What’s the future?
Well, hopefully it involves osseointegration becoming available on the NHS in the not too distant future. Whether it will be available to patients living with CRPS or only those who’ve developed CRPS after amputation, though, is a question we can’t yet answer.
In terms of advancing technology, al Muderis’ team is focusing on “performing targeted muscle reinnervation in upper limbs and giving the ability for patients to utilise mind control robots and robotic arms.” He adds: “That is the next generation and we are working on implantable electrodes as well, that we implant into the nerves and the muscles to allow the patient to operate these robots.”
How can I find out more?
A good place to start is Al Muderis’ website: http://www.almuderis.com.au/ It gives a lot of information on osseointegration and the other procedures he performs, plus outlining the procedure to follow should you be interested in visiting his clinic in Australia.
The Amputee Osseointegration Foundation Europe at http://www.osseointegration.eu/ provides a wealth of information about the surgery and also has a list of healthcare providers in Europe who perform the operation.
You may also be interested in the following articles:
Why do people with CRPS and Chronic Pain so frequently suffer bowel and bladder problems?
Can Plasma Exchange Therapy help severe, longstanding CRPS?
The Rio Firefly: is this a mobility breakthrough for CRPS and chronic pain sufferers?