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Advice/suggestions needed please for my Mum.

Thankyou for reading firstly i will try and keepo this as simple as i can... as its quite long
My mum is 44. For over 10 years she had had spinal problems. In around 1999-2000 she has emergency su
rgury as they diagnosed cauda equina syndrome, after she had had 2 discectomys (sp?) and was rushed in and ended up having the lower spine almost totally rebuilt. They said she had degenerative disk desiese aswell as stenosis of the lumber spinal and her spinal cord was very damaged ... After weeks in intensive care she came home on massive amounts of morphine etc... And that was that she just carried on best she could looking after us each day despite pain and limited mobility.

In 2011 she was getting worse, it began effecting her arms, she was getting massive headaches, and when she asked the GP he sent her for a scan, as it had been 10 years plus since her operation.
They told her it was alot worse, and it was know in her neck so cervical stenosis, and in her middle back ( thorasic??) and she had arthritus, spondilosis (sp) etc.. But basically there was nothing they could do except offered her methadone, which she said no. and told her as she was overweight surgury would be risky... but as she was still coping, to go home and increased her medication.

Then 7 weeks ago she phoned me in massive pain with her head. Id noticed her worsening in pain for a few months, but like she always did she would say no im ok. I told her to try and sleep. Then the next day my dad called, That he was worried and had called the GP who told him to take mum to hospital , and would i go. As she could not move her left leg, at all.

I took her, we waited hours, Eventually seen, her pain was through the roof. He said she had weakness all her left side! and she had no reflexes at all in her legs.
They admitted her for tests.

We are know 7 weeks later and she is worsening. She know has excruciating pain in her arms, her leg still will not move despite her trying so hard, still no reflexes, the weakness is worse, she cant evenb open a packet, or spray deoderant.
I hate seeing her like this, she tried to have a wash yesterday and the nurses ended up having to get her in bed she was shaking in pain and sweating from her arms.

They have done scans etc, and said her spines that much of a mess, they cant see exactly whats causing it... the dr stood there yesterday and said ' your condition is too complex' So she feels total deflated... and im worried as its getting worse. they said they will do some nerve conduction test... But i have spent hours searching and cant find anything that would cause these symptoms.

Has anyone ever heard of this... had this... what was it... what could it be. As i just want to help her. and maybe if i find something out, tell the Drs, ask them to see if this could be the cause.

Thankyou for reading, sorry its long, but i wanted to explain all i knew, as im desperate to help as watching her each day worsening, and her limbs just seemingly shutting down, its breaking my heart.
Thanks again
2 Responses
620923 tn?1452915648

  Hi and welcome to the Spinal Cord C/D forum.

Well it is hard to say what is going on as I am not a Dr, this is a support forum.....but we do have an expert forum if u want advice from a Dr......

I would ask if a MRI was done of her brain...and in the MRI's done of her cervical, thoracic and lumbar spine did she have a syrinx?

Was she tested for a condition called Ehlers-Danlos?

And how over weight is she, as weight  can and does play a role in how we feel and in our health....and what they can do safely...surgery wise...putting someone under gets more difficult when over weight.

I also ask bcuz  sometimes overweight individuals have an increase in CSF pressure this can cause severe HA's and other issues like a syrinx to form ...a syrinx can put pressure on the spinal cord, just like the bulging disks....if left too long putting pressure on the cord this can lead to paralysis...

  Ur mum may have a few diff things going on and not just one making it diff to determine what is going on...but if they look at all the things I mentioned they may be able to connect some dots.

  I also have been dx'd with DDD and have bulging disks, I was 27 when I was dx'd....but I have not had the same results in surgery and the failing of my disks ur mum has had. I also have stenosis...which is a narrowing of the spinal cord and that is right where my disk is bulging so not a good thing....

I am surprised with all the things they looked at CSF flow was not mentioned.,..do u know if  it flows well?
4216987 tn?1359372864
Oh my god ur poor mum I have no answers for you but just to say I hope you get answers somewhere soon and that ur mum gets better soon :)
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