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Spinal Cord Compression - Please Read

User
Posted 11 Sep 2019 at 22:13

Hi

I am posting this seperately from my "trials" threads as it is extremely important.  I was going to say I don't want to scare you.... but I really do!

Quick recap. Was offered a new trial, and had an extensive medical, followed up by base scans performed the following week. Unfortunately one of my blood levels was too high so outside parameters of trial so didnt go ahead. However, last friday I was told that the CT scan showed that I was showing signs of spinal cord compression. The pictures showed one point where the spinal column had a tumour starting to break into the canal.

Going back to my extensive medical, which included all relexes tested and I passed everything with flying colours. Fast forward to Tuesday this week just before getting an MRI scan, reflex were tested again. The doctor COULD NOT get any involuntary reflex action from any of my knees. Nothing, despite persistingly thumping me with his hammer. This is only 11 days after having no problem whatsoever. Guys, this is only 264 hours!

Straight after the MRI scan an emergency medical incident on me was called as it showed one of the tumours was now pressing directly on my spinal cord. That has happened in the week since my CT scan last Tuesday.

The plan was to give me all my radiotherapy in one go, but was decided today to treat me over 4 working days as the effects would be overwhelming, extreme tiredness, vomiting, diarrhea and bone pain flare up.

Enough about me, I think I have been extremely fortunate. I honestly thought my aches and pains were just because not getting any treatment at the moment, maybe I was getting slightly worse.

Talking with the oncologists, it was stressed to me that everyone who has had chemo was given an emergency number direct to the specialist ward. If anything, and I mean ANYTHING has changed, any ache or pain, numbness, pins and needles, give the number a ring. A specialist will talk things through and more than likely get you in to check you over and maybe a CT scan. Yes, you will have to write the whole day off but believe me, it will be worthwhile. This is no time for the British stiff upper lip.

Even if your regular Onco appointment is next week and you think you will just mention it then, dont! They will never dismiss your concerns. I was told that by my consultant yesterday that he has seen 2 men who's only symptom was numbness wiping their bottons after going to the toilet. Nothing else, just that. So noticed about 20 seconds once a day. No change in your body is too small.

If only one person reading this is inspired (or frightened) into getting any change investigated earlier, I will be so happy. My team was on the ball, and even then, I think I was only days away being paralysed. God knows what would happen after that.

Don't delay-Ever!

Best regards

User
Posted 11 Sep 2019 at 22:13

Hi

I am posting this seperately from my "trials" threads as it is extremely important.  I was going to say I don't want to scare you.... but I really do!

Quick recap. Was offered a new trial, and had an extensive medical, followed up by base scans performed the following week. Unfortunately one of my blood levels was too high so outside parameters of trial so didnt go ahead. However, last friday I was told that the CT scan showed that I was showing signs of spinal cord compression. The pictures showed one point where the spinal column had a tumour starting to break into the canal.

Going back to my extensive medical, which included all relexes tested and I passed everything with flying colours. Fast forward to Tuesday this week just before getting an MRI scan, reflex were tested again. The doctor COULD NOT get any involuntary reflex action from any of my knees. Nothing, despite persistingly thumping me with his hammer. This is only 11 days after having no problem whatsoever. Guys, this is only 264 hours!

Straight after the MRI scan an emergency medical incident on me was called as it showed one of the tumours was now pressing directly on my spinal cord. That has happened in the week since my CT scan last Tuesday.

The plan was to give me all my radiotherapy in one go, but was decided today to treat me over 4 working days as the effects would be overwhelming, extreme tiredness, vomiting, diarrhea and bone pain flare up.

Enough about me, I think I have been extremely fortunate. I honestly thought my aches and pains were just because not getting any treatment at the moment, maybe I was getting slightly worse.

Talking with the oncologists, it was stressed to me that everyone who has had chemo was given an emergency number direct to the specialist ward. If anything, and I mean ANYTHING has changed, any ache or pain, numbness, pins and needles, give the number a ring. A specialist will talk things through and more than likely get you in to check you over and maybe a CT scan. Yes, you will have to write the whole day off but believe me, it will be worthwhile. This is no time for the British stiff upper lip.

Even if your regular Onco appointment is next week and you think you will just mention it then, dont! They will never dismiss your concerns. I was told that by my consultant yesterday that he has seen 2 men who's only symptom was numbness wiping their bottons after going to the toilet. Nothing else, just that. So noticed about 20 seconds once a day. No change in your body is too small.

If only one person reading this is inspired (or frightened) into getting any change investigated earlier, I will be so happy. My team was on the ball, and even then, I think I was only days away being paralysed. God knows what would happen after that.

Don't delay-Ever!

Best regards

User
Posted 11 Sep 2019 at 23:15
This is a really important point Orm - we have seen too many members on here that had never been warned about the indicators of SCC and / or were unaware that it is a medical emergency. In a couple of cases it was only posting on here and getting panicky replies of "phone an ambulance now!" that prevented more serious damage and sadly we have seen men here who were left permanently disabled by SCC.

Glad that you got the response you needed at the right time!

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 12 Sep 2019 at 12:15
Fully agree. Literally came home from Royal Derby hospital last night after nearly two weeks. All started fortnight before with the numbness across bottom, thought I’d mention it at next Oncologist meeting! Then the lower back pain became really bad so took myself off to A&E on the Sunday to be told they should have seen me two weeks ago, this was a medical emergency. Bowel movements packed up and bladder refused to cooperate. So catheterised and scheduled for five fractions of radiotherapy across sacrum. Released home back to my Oncologist at Queen’s Burton. Still numb but Symptoms improved except bladder so on medium/long term catheter and feeling bloody exhausted. Fully intend not to ignore any changes, no matter how small in future.

David

User
Posted 26 Sep 2019 at 15:41

Had my follow up appointment with the head of radiotherapy/oncology department., following the 4 x 45 minute intensive radiotherapy sessions.

Told that SCC is rather similar to having a stroke with neurological damage to spine rather than the brain. They have taken decisive action against the tumours, but what they do not know is what, if any, nerve damage has been caused, and if it indeed will get any better.

I am constantly aware that I seem to have "nothing in the legs" at the moment and get upset with myself that I am not recovering faster that I would like, but told it could take many months before any sort of normality can be established.

I still walk every single day, and know to the minute how long certain walks from my house takes. As an example, a walk which with regular monotony used to take 38 minutes now takes 55-60 minutes.

This is after SCC was diagnosed and acted upon immediately. I shudder to think if there had been any delay. I feel like the luckyist man alive.

I can be considered for more trials 28 days after radiotherapy so just another 2 weeks to go.

Best regards

User
Posted 26 Sep 2019 at 16:18
And one of the toughest
User
Posted 13 Oct 2019 at 15:34

Just to give you an update on my physical progress, the human body is a truly remarkable thing.

As you know, I have remarked having "nothing in my legs" and about the disconnect I seem to have between my brain and legs.

Last week, whilst persevering walking, I had a strange sensation in my left leg, the following two days I had what could only be described as an electric shock down the same leg, twice.

It appears that it was my nerves reconnecting with my legs as the zapped tumours were receding away from my spinal cord!

Fast forward a week and although not exactly back to what I was, I think I am getting stronger day by day. Maybe 80% but getting there. My usual walking pace was a fairly fast 6km/hour, and two or three weeks ago the most I could manage about 3.8-4km/hour. This morning I achieved a sustained 3 mile walk at 5.6 km/hour! I just need to work on my stamina so I can do a normal 6 mile continuous walk at a fast pace. As it is at the moment I need to split my walks up and have a rest in the middle.

Saw my Onco last week and told another trial is imminent for me but in the meantime I have been put on Stilbestrol as an interim measure. Bloody hell, forgot about hot flushes!

Here is another interesting thing. My PSA, which nearly blew the testing machine up with a level of over 1700 has more than halved to a little over 800. After the intensive radiotherapy they fully expected the PSA to spike even further. It has got them a little baffled.

As I said on my opening sentence, the human body is a remarkable thing!

Best regards

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User
Posted 11 Sep 2019 at 23:15
This is a really important point Orm - we have seen too many members on here that had never been warned about the indicators of SCC and / or were unaware that it is a medical emergency. In a couple of cases it was only posting on here and getting panicky replies of "phone an ambulance now!" that prevented more serious damage and sadly we have seen men here who were left permanently disabled by SCC.

Glad that you got the response you needed at the right time!

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 12 Sep 2019 at 11:03

Absolutely right.

In the good old days, when radiotherapy was 10.00 to 16.00 Monday to Friday, there were few 'emergencies' that required using the machines on a Sunday. And those emergencies, when they did happen, were virtually always metastatic spinal cord compression (MSCC).

.

-- Andrew --

"I intend to live forever, or die trying" - Groucho Marx

User
Posted 12 Sep 2019 at 12:15
Fully agree. Literally came home from Royal Derby hospital last night after nearly two weeks. All started fortnight before with the numbness across bottom, thought I’d mention it at next Oncologist meeting! Then the lower back pain became really bad so took myself off to A&E on the Sunday to be told they should have seen me two weeks ago, this was a medical emergency. Bowel movements packed up and bladder refused to cooperate. So catheterised and scheduled for five fractions of radiotherapy across sacrum. Released home back to my Oncologist at Queen’s Burton. Still numb but Symptoms improved except bladder so on medium/long term catheter and feeling bloody exhausted. Fully intend not to ignore any changes, no matter how small in future.

David

User
Posted 26 Sep 2019 at 15:41

Had my follow up appointment with the head of radiotherapy/oncology department., following the 4 x 45 minute intensive radiotherapy sessions.

Told that SCC is rather similar to having a stroke with neurological damage to spine rather than the brain. They have taken decisive action against the tumours, but what they do not know is what, if any, nerve damage has been caused, and if it indeed will get any better.

I am constantly aware that I seem to have "nothing in the legs" at the moment and get upset with myself that I am not recovering faster that I would like, but told it could take many months before any sort of normality can be established.

I still walk every single day, and know to the minute how long certain walks from my house takes. As an example, a walk which with regular monotony used to take 38 minutes now takes 55-60 minutes.

This is after SCC was diagnosed and acted upon immediately. I shudder to think if there had been any delay. I feel like the luckyist man alive.

I can be considered for more trials 28 days after radiotherapy so just another 2 weeks to go.

Best regards

User
Posted 26 Sep 2019 at 16:18
And one of the toughest
User
Posted 27 Sep 2019 at 21:45

Thank you for sharing this on the forum.  

It was only from reading this forum that I gained the knowledge of Spinal cord compression.  It has never been mentioned to my dad at his consultations. 

 

 

Edited by member 27 Sep 2019 at 21:54  | Reason: Not specified

User
Posted 01 Oct 2019 at 18:38

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

User
Posted 13 Oct 2019 at 15:34

Just to give you an update on my physical progress, the human body is a truly remarkable thing.

As you know, I have remarked having "nothing in my legs" and about the disconnect I seem to have between my brain and legs.

Last week, whilst persevering walking, I had a strange sensation in my left leg, the following two days I had what could only be described as an electric shock down the same leg, twice.

It appears that it was my nerves reconnecting with my legs as the zapped tumours were receding away from my spinal cord!

Fast forward a week and although not exactly back to what I was, I think I am getting stronger day by day. Maybe 80% but getting there. My usual walking pace was a fairly fast 6km/hour, and two or three weeks ago the most I could manage about 3.8-4km/hour. This morning I achieved a sustained 3 mile walk at 5.6 km/hour! I just need to work on my stamina so I can do a normal 6 mile continuous walk at a fast pace. As it is at the moment I need to split my walks up and have a rest in the middle.

Saw my Onco last week and told another trial is imminent for me but in the meantime I have been put on Stilbestrol as an interim measure. Bloody hell, forgot about hot flushes!

Here is another interesting thing. My PSA, which nearly blew the testing machine up with a level of over 1700 has more than halved to a little over 800. After the intensive radiotherapy they fully expected the PSA to spike even further. It has got them a little baffled.

As I said on my opening sentence, the human body is a remarkable thing!

Best regards

User
Posted 13 Oct 2019 at 19:25
Great attitude , very stoic and brave. Best wishes on as good a recovery you can get !!

If life gives you lemons , then make lemonade

User
Posted 13 Oct 2019 at 21:16

Amazing progress with walking pace. Best wishes,

 

Ido4

User
Posted 13 Oct 2019 at 23:17

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.

User
Posted 15 Oct 2019 at 10:09

Well done for sharing. Similarly my late partner had SCC , as with some others, never mentioned in consultations or the potential seriousness of it. RT didnt help in his case. So important people are forewarned as to this most unpleasant condition.

User
Posted 11 Nov 2019 at 20:00

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

User
Posted 12 Nov 2019 at 15:06

Must have been a bit of a scare Orm. Glad you’re feeling has returned.

 

Ido4

User
Posted 13 Nov 2019 at 09:26

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

 

 

 

 
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