Dear All, i would really appreciate any input from walking paraplegics, i am very confused , i am post 23months decompression of the spinal cord surgery from t10/t11 , incomplete asia b , been doing intensive physiotherapy 5 days a week 3 hours daily , no contracture , full rom.
On medication wise i take 10mg just before i sleep and wakeup at around 4am to have another 10mg , with that i do not have strong spasm and am able to sleep. The rest of the day i do not take any anti spasm medication.
With that i am able to walk using spasticity at the knee to walk around smooth surface with the help of a pair of Solid ankle AFO and a walking frame for short distances. i cath every 4 hours and am on 2mg ditrusol. i wear a condom cath during the day as i get leakage sometimes. At night i swtich to a indwelling cath so that i do not really have to worry about dehydration and i do not wakeup to cath
The funny part is , during the day when i walk, right after cath i am alright. But if any leakage occur while walking , my legs go totally flaccid and it gets pretty dangerous as while urination into the condom cath, my quads and hips all seems to be flaccid with totally no energy, anyone faces this problem ?
Also i noticed my leg is still getting smaller, i am wondering why ? as i am actually covering more distance everyday ...?
Also i do not sit on the wheelchair for more than 2 hours as my spasticity increases tremendously, i need to stand up every 2 hours and i would be ok. Anyone having this pattern ? and whenever i lie down my whole leg, meaning the quads,calf and hamstring all go super toned. In the morning i almost cannot get out of bed alone without the help of an aid as the leg is having a stiff high tone. I am wondering what is causing the spasticity to shoot up so much while sleeping.
I did not face such problems when i first got out of the hospital as my leg was flaccid then , also i was on higher dosage of gabapentin and clonazepam. But it seems with being able to walk a little now and less gabapentin , my legs is getting smaller and my mornings are terrible , it takes about 2-3 hours of walking in the parallel bar to get the spasticity down.
Some suggested that i wear a night splint to sleep as that maybe causing the spasticity. During daytime, i tried wearing the solid ankle afo the whole day and it seems to delay the onset of spasticity while seating in the wheelchair.
Any inputs would be great, i am able to walk with a pair of afo and walking frame but i am no where near functional to be able to do that outside of the house. And that is mighty frustrating at the moment. Anyone that has similar problem/ recovery , please share your thoughts.