“I've lost count of how many operations I've had" - Waterlooville man included in cutting edge clinical trial after 32 years of blood clots
After 32 years of countless operations to remove blood clots, Robert Elliott is hoping a new cutting edge clinical trial could see a huge improvement in his life.
Having gone to the doctors with a pain in his leg, he was reassured he had just pulled a muscle playing football, but as his leg doubled in size it became apparent it was much more serious than that.
It eventually was diagnosed as deep vein thrombosis (DVT), but even with the blood clot removed it was only the start of Robert’s issues. Post-thrombotic syndrome is a chronic complication of DVT caused by permanent damage to the vein valves, which has plagued Robert ever since.
The 54-year-old self-employed builder said: “I have lost count of how many operations I have had but hopefully it could have a good ending.”
The journey towards that ending started in 2012 when he was contacted by the vascular team at St Thomas’s Hospital in London and taken under the care of Professor Stephen Black.
Professor Black said: “I have known Robert since 2012 when he first came and saw me about his post-thrombotic syndrome in his leg which was a consequence of blood clots that he had had. At that time there were some treatments available but they were very new, like putting stents in to try to reopen the veins.”
It was process that Robert had undertaken into 2013 with titanium stents put into the veins in his leg. While for some people, the procedure could be effective and last for decades, others can experience issues with furring of the stents with blood cots and scar tissue building up around them.
Unfortunately for Robert, he has been the later and has been required to go back for operations around two times a year over the last decade. The resolution has been to stretch the vein in the hope that it resolves it.
However for patients like Robert, it is not a long term solution. Professor Black described the process as similar to plumbing in a house becoming blocked and all you do is squash it to the side rather than remove it.
Hope has arrived in a device called Recana made by InterVene. Professor Black said: “It is essentially a blade that we can stick inside the stented area that we can use to cut the scar tissue out to try and clean the stent back to its original state. The blade is small so you can get it into the blood vessel in a keyhole procedure and then you dial it up so it gets bigger and shave the scar tissue away.”
The tissue removed is then collected in a type of basket which is pulled out with the device.
The trial has only been running since Christmas and St Thomas’ Hospital has already undertaken more operations than anywhere else in the world with 11 patients undergoing the procedure. The results so far have been promising with the hope that this stops Robert needing regular operations.
Robert jumped at the chance to be involved in the trial despite some hesitation from his family.
He said: “I’m always trying to be positive, and I am hopeful because I don’t have many other options if not. I don't actually want the operation but I am desperate and I need it. My kids have said why don’t you wait to see if it works first but I am not in a position where I can wait, I need to just go for it.”
The good news for Robert is that the procedures have so far been positive.
Professor Black said: “So far it has been encouraging, not every case has gone perfectly, there are still some people where the blade is not strong enough but we can only know that once we start using it.
“I am very hopeful that it will make a big difference to Robert. Do I think it is the final solution for him, probably not. For patients with post-thrombotic syndrome you have to be committed to supporting that journey for a very long time and making it better and better.”
Robert is set to undergo the operation on Monday, February 16.