Timeline


Below is a timeline presented chronologically, with the earliest postings at the top. Scroll down to view the rest of the timeline.

Pain in the leg!

May 6, 2015

I went to the doctor complaining about pain in my leg that was keeping me up through the night. I was experiencing very broken sleep each night. This had been going for a few months but seemed to be building up in intensity.

X-Rays

June 15, 2015

With the symptoms worsening, and my lack of sleep increasing, I was sent for X-Rays of my knee, hip and femur. The scans revealed very little. I trialled some mild painkillers to help me sleep at night.

So it’s a DVT then?

August 27, 2015

With the lack of findings and sleep becoming more and more elusive, I went back to the doctor and was referred to a Radiology Clinic. I had an ultrasound and as a consequence of this, I was diagnosed with a DVT (Deep Vein Thrombosis). The length of the clot was 10cm! I was shocked, but could this explain the pain and lack of sleep? I wasn’t surprised.

I was referred to a DVT specialist at a local hospital. The specialist confirmed the diagnosis of DVT and put me on a course of blood thinners.

I ask why I haven’t had the typical symptoms from a DVT: redness, swelling and so on, and it was explained that I have a dual vein system, and rather than the blood collecting behind the DVT and causing those sorts of symptoms, the blood is able to circumnavigate it’s way around the DVT. Hence no redness, no swelling.

So what’s this PSA thing then?

September 23, 2015

With various tests being conducted around this time, one area for concern was a blood test for PSA (Prostate-specific Antigen) proteins. An elevated PSA result is often the first step to a Prostate Cancer diagnosis and so I was referred to a specialist prostate urologist. I was advised to have an MRI for that meeting.

Cancer…. could it be…

September 30, 2015

The urologist indicated, that as a consequence of the MRI findings, that there was a chance that I could have prostate cancer but it was at a very early stage. Due to the fact that I was on blood thinners for my DVT, he wanted to delay the scan.

I can’t get no sleep…

October 2, 2015

The lack of sleep continued. Back to the doctor, more scans. No new information uncovered.

More DVT scans….

October 15, 2015

Follow up DVT ultrasound scans are ordered, and these confirm not only the DVT but also no reduction in the size of the DVT.

In the months that follow, my sleep situation worsened.

Reviewing… the situation….

February 8, 2016

My six month DVT review. Another set of ultrasounds. Again, confirmation of the DVT and indication of no change.

The sleep pattern would occur each night. I would fall asleep, only to wake an hour later with severe leg pain. I would then get up, walk around the house often for an hour or two until the pain settled. And then back to sleep – only to be woken again an hour or so later. Rinse, repeat.

The only time I would get some quality sleep seemed to be 4am to 5am onwards.

I can’t get no sleep… continued…

February 10, 2016

With a worsening sleep situation – I returned to the specialist. I not wholly convinced that the DVT could be causing the nighttime pain that I was experiencing.

Another MRI…

February 10, 2016

With the rapidly deteriorating sleep situation, now averaging just a few hours sleep a night, I was referred for an MRI scan of my leg.

It was later determined that within this scan they missed a key piece of evidence in one of the MRI “slices”.

London Calling!

June 16, 2016

As a family, we embarked upon a three-week trip back to my home city of London.

The trip was blighted by my lack of sleep. I also knew when I returned I would have to undergo an MRI guided biopsy, which I did.

Bone scan…

August 25, 2016

With the sleep situation spiralling out of control – I was referred to another specialist. This time for a bone scan. The scan revealed nothing out of the ordinary.

PET Scan

October 11, 2016

I was sent for a PET PSMA scan.

Prostate OUT

November 12, 2016

Following various tests indicating a significant change in the tumour, my prostate was removed by robotic prostatectomy.

The weeks that followed the prostatectomy were debilitating and painful. But could the removal of my prostate signify the end of my leg pain? Would I recover from the operation and then sleep normally again?

Alas, this wasn’t to be the case, and the leg pain continued.

I would have been to see any number of doctors and surgeons trying to explore what it might be. Everything from psychological (they suggested PTSD – post-traumatic stress disorder) to neurological referred pain, physical pain – you name it.

Separation

July 18, 2017

Following a difficult time, my wife and I separated.

The leg pain continued, and the two hours sleep a night continued. My resolve to get the matter increased yet again.

I’d always been convinced the pain though was not in my head, not psychological, and not referred pain from somewhere else or anything else that was I was being tested and treated for. I was convinced the pain was physical and local, vascular and within the leg.

I have been given epidurals, been treated with stacks of different drugs, pain and sleep medications… I have been hypnotised, acupunctured, had sound waves fired in each ear, all forms of leg and back treatment… doctor after doctor, surgeon after surgeon, psychologist after psychologist. Theory after theory. I’ve even had specialists tell me it’s all in my head.

I went back to my doctor in February 2018 and insisted on seeing another vascular specialist. This, despite having had several diagnoses already. My doctor hesitantly sent me to another specialist.

Could this be it…

February 27, 2018

I had my appointment, and this particular doctor had his own ultrasound machine on site, and he scanned my leg. Within minutes he told me that he thought I had been misdiagnosed. He didn’t think it was a DVT. He said we would need to MRI it, but it looks like a tumour.

Yep… it’s another tumour…

March 1, 2018

The MRI that night confirmed it, it was a tumour deep in my thigh. The size of a large walnut/golf ball.

When I look back – and I look through my seemingly endless pile of DVT scans, it seems inconceivable that this hadn’t been picked up by one of the scanners, or one of the doctors.

To cap it all, in one of the MRI reports, it was found that the operator and specialist missed a crucial clue – in one of the slices of the MRI scan, the tumour was visible.

I was referred to a new set of doctors/surgeons and sent for a biopsy.

This confirmed the tumour.

Radiation Therapy

March 27, 2018

I started six weeks of radiation therapy.

Almost immediately my leg pain subsided and I started sleeping through the night for the first time in a long time. It was absolute bliss!

Let’s get this damn thing out!

June 5, 2018

Surgery time. Two surgeons got to work on me and opened up my thighs. One surgeon worked on my left thigh, carefully removing a superficial vein for use in my right thigh. The other surgeon got to work on my right thigh, removing the tumour which was pressed up against my arterial vein which needed to be rewired with the vein from my left. A nerve also had to be removed.

The tumour was removed with clear margins.

Getting back into shape…

June 5, 2018

And following that, there was lots of physio trying to get my leg back into shape.

As a consequence of the operations, I have some lymphedema in my leg so I am undergoing compression treatment to deal with that. And with the nerve removed, I have lost sensation in half of my lower right leg.

And to the present…

June 5, 2018

I am alive, sleeping well, relieved, and feeling positive.

Latest updates coming soon

April 18, 2023

I will update this timeline shortly to bring it up to date! Lots to put on the timeline….