1 reply to this topic

[mikeym83]

hello, im newto thissite. i havea lipomaspinal cord tumor. i hae been blessedwithe the ability to walk on my own, but have limited range of motion but i get by will sumassistance. over the past 5 years i have noticed my knees andankles etting stiffer, witch has resulted in increases tone n clonus. in 2001 a doctor recommended i look into a pump but i dismissed it because i was probably 90-95 percent physically indepoendent. with sum difficulty n stiffness n clonus, i ould walk n do stairs n actually walk in high school n play golf! wen i moved into college i knew there would be too much walking involved than in a small high school, so i bought a scooter for thelong distances. over the past 4 years i have progressively gotten stiffer, my legs scissor wen i try to walk my ankles r so tight that any bending causes rapid clonis. i ca hardly bend my legsankles or arms now. ive gone from 4 years on my own 3hrs away from home at a university, to having to becarried around becuz of stiffness n clonus, plus my immobility is resulting in muscular atrophy,.

had i known this would happen i suredly wouldve checked into the baclofen pump in 2001, but i cant change the past....oh well

in october i had a baclofen injection test of .50 miligrams n it was too much, in november thedoctor gaveme .25 miligramswhich was not enough...december 8th i meet withe the nuerosurgeon to discuss what i should do. im almost 100 percent surei neeed the pump...oral baclofen doesnt work anymore.

i dont believe my physical situation isas severe as most..i think its amiracle, cuzthe doctors said at 2 months old that id never be able to walk.

duz any1 have a similar scenario, or any advice or suggestions....seeing ashow 8 moths ago i was walking n living in a dorm, n now stuck in my house ..i am very aggrevated n running out of patience...haha...i hope to hear from you

thanks,

mike

[tom71]

Mike,
sorry you have not recieved too many post, this site isn't used by that many people anymore, however while my situation isn't quite the same as yours here is my results from the pump, it has helped with tone in my quad and calf muscles, however my foot continually gets worse, my toes in particular, they curl under causing tremendous pain, but since the implant I have been able to return to work where I'm on my feet most of the day,the pump has done nothing with my tone in my arm and hand, Good Luck!
Tom