Spinal Cord Compression - Please Read

I’m so sorry you got this, but fantastic that something has been done. I will never know if John had it as he wasn’t able to move for the 21 days of so before he died but I suspect so. He had no bowel movements whatsoever though and had a catheter anyway. He had had severe pain in his knees and numbness in his legs meaning he was unable to stand or walk, he didn’t get referred as he was immobile and we thought that any attempt to get him to hospital would be catastrophic. It’s great that you have raised this serious issue as people simply don’t realise this can happen so quickly.

good luck for the future treatment

Devonmaid xxx

Thank you for sharing this - we had no idea this sort of thing could happEN so suddenly. The alert may save someone else in the future.

Just a quick udate. last Thursday in bed I was suddenly aware of my right foot being completely numb. Even all my toes. I knew immediately it was more spinal cord compression. Emergency number rang who advised going to A&E immediately.

Later on Friday I had another MRI scan which confirmed the compression on the lower part of my spine. Given huge dose of steroids to reduce swelling on cord. and a weeks supply whilst they conferred with my specialist oncology team, which is a different hospital.

Had this been a new area then I would have had more radiotherapy. Unfortunately this was one of the areas treated in September and I had the maximum amount of radiation permissible. Therefore the plan is to continue on the steroids, albeit on a reduced amount. They think this is just a flare up and can be controlled untill my next phase 1 trial which is imminent.

As an absolutely last resort, surgery has been mentioned but they are loath to do (not too keen myself!)

The steroids are working however, as I have feelings back in my foot, even my toes, which is great. Seeing Onco in 4 weeks so that will be interesting.

Never a dull moment!

Best regards

Well here I am back in Royal Derby for the last 10 days looks like the spinal compression is making a real fight of it. Had to go to Derby because Burton MRI don’t run at the weekend. Have now got pretty good use of my left leg but not the right. Having another five fractions o Radiothrapy. They’re determined to get the right leg functioning so am hopeful on that score. Bowel movements have sprung into life and need watching!  Bladder still catheterised. Did a stupid trick in the ward by trying to make it to the loo ( against all instructions) promptly fell so have a very sore back. Absolutely no idea where this is all going but just a little anxious  

one blow is that my lovely oncologist saw me yesterday to tell Abiraterone is not working. Expect this means Cabazitaxel but what then? She doesn’t really want to see me just yet until I can get a bit better and hopefully walk. All getting a bit worrying.

onward and upward

David

Hi David, I hope that you are recovering well and everything is going to plan re: treatments and physio.  I totally agree that any man with the symptoms you described should get help straight away.  Get a relative or friend to take you to A & E for an emergency MRI.  My advice would be do not waste valuable time dialling the emergency services.  The time spent waiting for them to arrive is currently diabolical, the questions they ask upon arrival are all about box ticking before they even decide whether to take you to hospital.  My relative has advanced prostate cancer and knows he is on borrowed time.  We suspected a SCC and said this to emergency services. He had developed bowel incontinence and was struggling to walk. The emergency services watched him walk down 2 flights of stairs and to the ambulance whilst in very obvious pain and no assistance whatsoever was offered.  He spent over 24hrs on a trolley in A & E before they could find him a bed on a ward.  So hence, it was even longer before he had his MRI scan.  A further 24hrs at least before he was offered radiotherapy, an operation was out of the question.  He is now struggling to walk and devastated that he may not be able to walk again.  When I think of all of the treatments he has endured since his diagnosis nearly 5 yrs ago and how well he has coped, it makes me so angry that all of the advertising campaigns harp on about mens health and how they should get checked etc etc.  He visited his GP numerous times and was fobbed off and told he was stressed.  Well, no where near as stressed as he has been the last 5 yrs as by the time they checked his psa he already had incurable cancer.    All of the guidelines relating to SCC also state that it is an emergency and should be treated as such but they have yet again failed on all counts.  The only things I can say that are favourable about his treatment are that he has a brilliant oncologist and the nurses on the wards he has been on have been excellent.  Never have I been more aware of how upsetting, stressful and debilitating a prostate cancer diagnosis can become.  Money spent on treatments after diagnosis would be better spent on ensuring all men get checked and listened to when symptoms develop instead of advertising and leaflets.