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Spinal cord compression delayed diagnosis

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User
Posted 03 Feb 2020 at 21:33

Hello

My dad went to A&E when he could feel his legs giving way, they sent him home with antibiotics for a urinary tract infection.  Did muscle power tests and sphincter tests and ruled out spinal cord compression. 

Two days later his legs were still giving way, difficulty walking so I ensured he went to the A&E where he receives treatment for cancer.  

Tested for good power in legs, and CT scan done which confirmed no spinal cord compression.  However they said cancer had progressed to lymph nodes and fast tracked my dad home with 3 months to live. 

My dad could not have the mri as claustrophobic and there was talk of an open mri but too much paper work so was never done. 

 

My dad could stand but not walk, could lift his legs and wiggle his toes.  But in the past week he has lost all sensation below the waist and his legs feel cold and numb. No more movement remains.  

I looked at his medical records and in the MDT meeting it states possible spinal cord compression and radiotherapy possible but no mri available.   Another entry in the notes questions if he should be given high dose steroids but myopathy is a differential and even if mri confirms spinal cord compression the radiotherapy will be of no use to my dad. 

I am annoyed as we were told he cannot walk because of oedema, which has now gone down.   

I managed to arrange an open mri, in a private clinic all self funded for part of the spine which controls walking.  I get the results soon. 

My main concern is we’re clearly told no spinal cord compression by two different hospitals and now my dad has very little feeling below the waist.   Each day it has got worse and he can no longer stand. 

He has spinal stenosis in lumbar region which was there 10 years ago, and I am now left wondering is it spinal stenosis or is spinal cord compression for prostate cancer?

My poor dad is devastated by not being able to walk.  I am seriously questioning if there has been some medical negligence.

I have no idea where to go or who to turn to for help as it seems he has been written off.

 

 

User
Posted 04 Feb 2020 at 15:53

You are in a difficult situation. They cannot say for sure if it is SCC as he refused an MRI which would be definitive. However all treatment options would be based on their findings. Not familiar with an open MRI but if confirmed, an intense blast of radiotherapy over a week should zap any tumours pressing on spinal cord.

High dose of steroids also good as it would reduce any inflamation although they will reduce on a managed basis.  Also, cannot understand why results of open MRI was not given straight away. In my case a medical emergency was declared when I was actually in the scanner so it can be done.

Overall your concern is justified but it does not seem there is any urgency from both sectors. Keep on pushing for answers.

Best regards

User
Posted 04 Feb 2020 at 18:40

I'm very sorry to hear your news. The only real treatment for spinal stenosis is surgery. I suspect that won't be considered because of your dad's terminal diagnosis.

Best wishes,

Chris

Edited by member 04 Feb 2020 at 19:09  | Reason: Not specified

User
Posted 04 Feb 2020 at 19:14

So sorry to read about your Dad.

My dad has spinal stenosis which causes his legs to give way randomly plus nerve pain because of the pressure on the nerves. A surgeon told us the best they can do is arrest progression of problems with the risk of causing further issues while they operate.

My dad opted not to have any surgery. He takes Gabapentin to help with the nerve pain.

Your Dad has so much going on, it must be very difficult.

My thoughts are with you and Dad.

Ido4

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User
Posted 04 Feb 2020 at 15:53

You are in a difficult situation. They cannot say for sure if it is SCC as he refused an MRI which would be definitive. However all treatment options would be based on their findings. Not familiar with an open MRI but if confirmed, an intense blast of radiotherapy over a week should zap any tumours pressing on spinal cord.

High dose of steroids also good as it would reduce any inflamation although they will reduce on a managed basis.  Also, cannot understand why results of open MRI was not given straight away. In my case a medical emergency was declared when I was actually in the scanner so it can be done.

Overall your concern is justified but it does not seem there is any urgency from both sectors. Keep on pushing for answers.

Best regards

User
Posted 04 Feb 2020 at 18:21

I got my answers, and I am in total shock as I write this. 

It was worth paying for the open mri scan privately, the results confirmed severe spinal stenosis of lumbar spine in one region which has caused my dad to lose ability to walk. It’s nothing to do with the prostate cancer, although that is present in some of the vertebra. 

Does anyone know if this is reversible and can be treated? 

Sadly the report also shows suspected pancreatic cancer with a larger gall bladder and dilated bile ducts. 

Now I am left wondering how was the pancreatic cancer not picked up as my dad has had a lot scans in recent years.  I’m sure he has ultrasound too in this area last year.  

I am baffled how my dad can be attending an oncology clinic for the past 6 years and the pancreatic cancer was not picked up. 

I am shocked my dad has been sent home by 2 different hospitals unable to walk, a symptom that appeared suddenly overnight. 

Finally  the family now understand why he cannot walk,  it’s due to spinal stenosis.  

But not sure how to deal with the shock of the pancreatic cancer,  I look forward to having all his scans reviewed, how can this be missed?

 

any advice welcome.  

 

 

User
Posted 04 Feb 2020 at 18:40

I'm very sorry to hear your news. The only real treatment for spinal stenosis is surgery. I suspect that won't be considered because of your dad's terminal diagnosis.

Best wishes,

Chris

Edited by member 04 Feb 2020 at 19:09  | Reason: Not specified

User
Posted 04 Feb 2020 at 19:14

So sorry to read about your Dad.

My dad has spinal stenosis which causes his legs to give way randomly plus nerve pain because of the pressure on the nerves. A surgeon told us the best they can do is arrest progression of problems with the risk of causing further issues while they operate.

My dad opted not to have any surgery. He takes Gabapentin to help with the nerve pain.

Your Dad has so much going on, it must be very difficult.

My thoughts are with you and Dad.

Ido4

 
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