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Spinal cord compression and paralysis

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User
Posted 28 Apr 2020 at 22:35

I lost my father the most wonderful man to prostate cancer a few weeks ago. 

He was diagnosed 6 years ago and had exhausted all options.    One day he woke up and was finding it difficult to walk and had pins and needles in his arms and both legs so we attended A&E.   

We asked Specifically is this spinal cord compression, and were turned away and told no it’s just a urinary tract infection.  We felt relief and were given antibiotics.   Even reassured it was not spinal cord compression. 

So we left and my dad was still walking but a little unsteady.  

Two days later tried a different A&E just in case as the difficulty walking was getting worse.   Again asked specifically is this spinal cord compression?  Only to be told unlikely!   Even by the senior oncologist!

My dad is severely claustrophobic and we were told have a CT instead.  It showed no spinal cord compression.   We asked shall we go private and pay for open MRI if it helps,  even insisted on it, to be told it’s just progression of cancer and only 3 months of life left. 

So my poor dad sent home, only to become completely paralysed and no feeling at all in the legs a week later. 

We thought we would try the private route had an open MRI and spent thousands to be informed that it was not stenosis, but spinal cord compression.   

So we went to a third A&E to get the treatment of steroids (this was one month later)  ....... some sensation returned within 3 hours, with some occasional shock like movements in the legs.  My dad was given 5 doses of radiation to the area of spinal cord compression.   But the treatment was too late and my dad was unable to walk at all. 

My dad was given full spinal precautions and we were informed of risk of autonomic dysreflexia, given bowel management advice etc.....

Sent home and my dad lived for 7 weeks,   The care was 24 hours and he had to be sedated in the last few days. 

His suffering is over, but mine continues.   I want answers and cannot understand how spinal cord compression can be missed.  

What are the alternatives if two A&E’s and a senior oncologist say unlikely spinal cord compression.   What are the alternatives if someone cannot have MRI??  

I hope no one else suffers like we did. 

 

 

 

 

 

 

User
Posted 29 Apr 2020 at 00:31
Oh MBS, I am so sorry to see that your dad has gone. I am a bit confused by your comments about the SCC though as you posted in February that the private MRI had confirmed that it wasn't SCC or anything to do with the prostate cancer.

Pancreatic cancer is often very swift and I think you said that in January dad was given 4 to 12 weeks so I guess the prognosis was quite reliable although that doesn't make it any easier for you to process your loss. All I can say is that in time, you will be able to draw on happier memories and the horror of his last few weeks and months will fade.

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

User
Posted 29 Apr 2020 at 00:34

I'm really sorry for your loss.

I looked back through your last posts on this. Part of me is thinking this sounds like Cauda Equina Syndrome (CES), but some bits don't fit, such as the pins and needles in the arms. It sounds like they actually did some tests for CES, such as checking if sphincters working, so they were possibly suspecting it too. CES is sometimes missed until too late to treat - there's only a small window of opportunity to treat it, if at all, and patient needs to be up to spinal surgery. MRI is pretty key to diagnosing it (hospitals have been successfully sued for not having MRI scanning available overnight when CES patients have arrived, and thus not treated in time).

I lost my mother to hospital acquired covid-19 a month ago. For a couple of weeks afterwards, of course I'm thinking of her in hospital deteriorating which was upsetting. (I was allowed to visit and feed her everyday which is comfort many other families didn't get, but I also got to see her going downhill.) Even without covid, I know the result would eventually have been the same, maybe a month or two later with almost no QoL. I can now think further back to the very many times we enjoyed together and it's (mostly) no longer upsetting to me.

I guess what I'm saying is something avoidable may have gone wrong in A&E, impacting QoL and shortening life (but possibly not by much if he did have stage 4 pancreatic cancer). Focusing on that in the immediate aftermath is inevitable, but do you want to spend months or years on it to get answers? Do consider your own quality of life now, and remember the good times. Sorry, and I'm still not sure this is the right thing to say, or that there is any right thing to say, but you certainly have my sympathy.

User
Posted 30 Apr 2020 at 16:18
MBS and Andy62.

So sorry to read about the death of your parents.

Kindest wishes to you both

Jane

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User
Posted 29 Apr 2020 at 00:31
Oh MBS, I am so sorry to see that your dad has gone. I am a bit confused by your comments about the SCC though as you posted in February that the private MRI had confirmed that it wasn't SCC or anything to do with the prostate cancer.

Pancreatic cancer is often very swift and I think you said that in January dad was given 4 to 12 weeks so I guess the prognosis was quite reliable although that doesn't make it any easier for you to process your loss. All I can say is that in time, you will be able to draw on happier memories and the horror of his last few weeks and months will fade.

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

User
Posted 29 Apr 2020 at 00:34

I'm really sorry for your loss.

I looked back through your last posts on this. Part of me is thinking this sounds like Cauda Equina Syndrome (CES), but some bits don't fit, such as the pins and needles in the arms. It sounds like they actually did some tests for CES, such as checking if sphincters working, so they were possibly suspecting it too. CES is sometimes missed until too late to treat - there's only a small window of opportunity to treat it, if at all, and patient needs to be up to spinal surgery. MRI is pretty key to diagnosing it (hospitals have been successfully sued for not having MRI scanning available overnight when CES patients have arrived, and thus not treated in time).

I lost my mother to hospital acquired covid-19 a month ago. For a couple of weeks afterwards, of course I'm thinking of her in hospital deteriorating which was upsetting. (I was allowed to visit and feed her everyday which is comfort many other families didn't get, but I also got to see her going downhill.) Even without covid, I know the result would eventually have been the same, maybe a month or two later with almost no QoL. I can now think further back to the very many times we enjoyed together and it's (mostly) no longer upsetting to me.

I guess what I'm saying is something avoidable may have gone wrong in A&E, impacting QoL and shortening life (but possibly not by much if he did have stage 4 pancreatic cancer). Focusing on that in the immediate aftermath is inevitable, but do you want to spend months or years on it to get answers? Do consider your own quality of life now, and remember the good times. Sorry, and I'm still not sure this is the right thing to say, or that there is any right thing to say, but you certainly have my sympathy.

User
Posted 30 Apr 2020 at 01:25

Thank you for your reply 

sorry for the loss of your mum to Covid.   They suspected Covid as the cause of death for my dad too.   His immune system was weak from the prostate cancer. 

A lot of the patients at the hospice were dying of covid and they suspected a different strain in the cancer patients. 

I won’t give up on finding my answers of what went wrong in A&E.  I owe it to my dad to make sure I get to the bottom of any errors. 

 

 

 


They ruled out CES.   

 

 

 

User
Posted 30 Apr 2020 at 16:18
MBS and Andy62.

So sorry to read about the death of your parents.

Kindest wishes to you both

Jane

 
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