9 mm cyst

[marialou]

is ther anybody with proffessional medical knowledge of personal knowledge through experience out there that could give me an inkling as to how serious my daughters conditon is without sugarcoating everything like after 14 years of perminent visits to hospitals doctors have always done and i still have no answers.
my daughter is 14 and has a 9mm syrinx t-6 2 t-11 and a rare muscle disease.(centronuclear myopathy)
im scared.im not stupid,i know it aint good for gods sake,
not knowing is doing my head in more tho
appreciate any help with thanks

[marialou]

firstly thankyou for your help.i just need answers.could u read my daughters profile if u have the time because there is so much,in fact too much to even try to explain.
in the last day she is complaining of pain around her ankle bone on her right foot,she often has aches an pains but this is causing concern.what would even cause her ankle to hurt this way?
lisa

[DrNoopurMD]

Hi,

Centronuclear myopathy is a congenital form of myopathy characterized by low muscle tone, muscle weakness and delayed developmental milestones. Unfortunately there is no cure for this disease as yet. The treatment is mainly focused around physical and rehab therapy and occupational therapy.
These patients are very susceptible to pulmonary infections which can be fatal so it is important to ensure that the airways are clean and free of mucus. Another frequent complication is scoliosis due to weakness of trunk muscles and may require surgical correction.
Syrinx in the spinal cord is a fluid filled cavity in the spinal cord which can also cause muscle weakness, atrophy, loss of reflexes and loss of sensations.
Surgical decompression of the spinal cord is usually done to relieve the symptoms.

Hope this helps, let us know if you have other questions.