Wednesday 26 July 2023

Too Much and not Enough

 As you may recall I told you that Lucy has a syringomyelia and I've been getting advice from a neurologist who is not Lucy's doctor. She thinks it would be better to ask for Lucy to be referred back to the Children's hospital as the waiting list is a lot shorter, so I'm going to contact them and see if this is possible. 

Then I get more information on syringomyelia. It's a neurological order where CSF (cerebrospinal fluid) causing a fluid filled cyst on the spinal cord, a syrinx. Apparently Lucy has two and they were picked up on her MRI. They can be harmless and never detected, but if they cause problems then they need to be treated. 

Lucy has problems as we know. Things that can be cause by syringomyelia which Lucy currently suffers from are:

  • pain
  • pins and needles
  • bladder problems
  • bowel problems
  • weakness in limbs
  • stiffness in limbs and neck
  • loss of balance
  • headaches
The most common cause of syringomyelia is chairi malformation. But it can also be caused by spinal cord injury.
Lucy has had surgery on her cervical spine, in her notes it says from injury but I know that she wasn't injured it was idiopathic but the doctors wouldn't believe me, so I said she fell off her scooter (when she hadn't but at least it got her a scan and treatment) 
It was most likely caused by her EDS (Elhers Danlos Syndrome.) 

At the time of her treatment for her cervical spine I was told quite categorically that it was NOT chairi malformation but intercranial instability. I've been looking up the surgical procedure for Chairi malformation and it's exactly what she had, decompression surgery. She also had a spinal fixation which is a procedure for Chairi malformation for children with type 1 Chairi and EDS. I was also told that there was NO leakage of CSF but now, some 9 year later we find out that there was, otherwise she would not have syringomyelia. 

I really don't know what to think. If I send her back to the Children's hospital it means that they will be more understanding about me staying with her. But it also means she'll be under many of the same doctors who now appeared to have got things really wrong. 

Treatment, if she ever gets around to it, will possibly be a draining of the syrinx using a shunt. This is the minor of the operations available and hopefully she won't have to go through another decompression surgery. 

If she doesn't get treated it could get very much worse for her. People with this condition can have no symptoms and live normal lives, but Lucy already has symptoms and they could get very much worse. 

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