I do hope someone can help me....Im a 22 yr old with
spinaMeningocele repair
Myelomeningocele
Spina bifida
Spina bifida (degrees of severity)
Spina bifida - resources bifida. I also have syringomyelia (
csfCerebral spinal fluid (csf) collection
Csf cell count
Csf chemistry
Csf protein test
Csf total protein
Glucose test - csf fluid build up in the spine). 5 years ago i had a
shuntCyanotic heart disease
Transjugular intrahepatic portosystemic shunt (tips) inserted to reduce this build up, but I have recently started experiencing new and severe symptoms. Basically the fluid is building up again, which is putting
pressurePressure ulcer on the nerves to my
handsHand or foot spasms
Hand tremor and arms. In 3 months I have lost all movement in my right
handHand or foot spasms
Hand tremor, and have started to lose it in my left hand too. I also have quite extensive muscle wastage in both hands and arms.Due to the build up, i experience excruciating pain across my upper back. I have been told i will need another shunt inserted but it seems to be taking so long, whilst my symptoms are escalating by the minute.If anyone can give ideas as to anything i can do to benefit my situation i would be grateful. I dont know if there are exercises i could do, or eat certain foods. Everything I know about my situation is from my own research...i have not actually been given any direct information myself. I use a wheelchair and dont know what i would do if i lost ability completely in both hands as i would then have to be completely dependent on someone else. Any suggestions are gretly appreciated.