muscle problems..syrinx..

[lisaob1]

my daughter falls all the time..her legs just give in on her..she has pains all the time and i dont know how to make it go away...

[lisaob1]

hi selma..i too just remember speaking with you also..my daughter,maria,has a 9mm syrinx T6-T11,..the problem with consultants not wanting to do anything further regarding treatment is because when she was 12 they done a muscle biopsy soley for no other reason but to rule out any form of muscle disease...and as it turned out..shockingly to all involved in my daughters care..she also had an extremely rare muscle disease also...a centronuclear myopathy..and that within itself is rare but she had one they had never come across...so talk about throwing a spanner in the works to say the absolute least..now all im told is they dont know if its the syrinx or the muscle disease causing the problems..and as both are so rare i just feel like they are sitting on the fence now and basically they cant help or tell me what to do for my daughter..basically because they dont even know themselves

[selmaS]

  Hi Lisa....does ur DD also have Chiari? I am sure u told me b4, but I do  not remember.....

A syrinx as it grows larger will put pressure on nerves, and it depends on where the syrinx is as to which nerves r affected.....

Most times a PFD surgery is done, and by restoring CSF flow, it also allows the syrinx to shrink....when this occurs it should...release the pressure on the nerves and relieve much of the pain and distress....it does not always work and if the syrinx is large enuff they may opt to use a stent or a shunt....

Again, it all depends on what is the cause of her syrinx...chiari or ICP....