hi everyone, forgive me if im not in the right topic area. i havent written a msg in a while.
i am messaging to get advice on some weird changes in body and further treatment options advice.
large SS in chest wall, completely removed by surgery on 18th and 19th dec 2017. some of my right ribs were removed, as well as the middle-ish of my spine removed. a bone was placed in the missing spinal area and two big metal rods. i stayed in hospital for recovery until 10th april 2018. recovery went from the initial expectation of 6 weeks to almost 4 months, as i ended up needing to have further plastic surgery (skin flap & skin graft) because radiation had damaged a part of the surgical area.
so once im discharged and home i am now moving independantly, although my walking was very awkward and still needing handheld help at times & a wheelchair for long distance, i was definitely walking at a great pace considering i was in a bed for so long.
at this point i also know that although my tumor was successfully removed in surgery, i now have some lesions in my left and right lungs. chemo x radiation x surgery were not recommended options apparantly due to the surgeries i had just gone through and doxorubicin & ifosfamide didnt help shrink my tumor before surgery either. i knew this while going home to work on recovery at home and have been looking into other options now. pazopanib & an immunotherapy trial being part of the options i am exploring.
then about 3 wks ago i notice a drop in my right foot and over the next week the whole leg will continue to lose strength. but my left leg is still fine up until last friday. by last week fri, my right leg is almost completely unable to move on its own and my left leg starts to weaken where im unable to get a grip on the floor. it felt as if i had swollen feet. i was unable to stand up on my own. i couldnt even sit on the edge of the bed with my feet planted because my feet would just buckle and slip as if it were melting away.
ive been in hospital since this mon 25th jun. over the course of this week i can now no longer move both of my legs, even for just a wiggle of the toes. but i still have a bit of sensation. although checking that again today, the sensation doesnt seem the same as it were just a few days ago either. so its clear that whatever is happening is happening very fast!
ive had xrays, ct scans, an MRI, a lumber puncture. they showed nothing pushing on my spinal chords and nothing on my nerves. they cannot get an an absolute pic of the spinal chords/bone under the metal rods because of the magnets in the ct scan and mri but the ortho surgeon who did my initial tumor removal is adamant that area they operated on is still in perfect condition.
i had a neurologist and nerve specialist do some tests on me and concluded they think it is something to do with my spinal chords but cannot prove it by the scans ive done and have no other way to help.
the ward doc told me that because they dont know whats causing the paralysis in my legs they have no idea how to treat it. “time will tell” is what theyre telling me.
im curious to know what you all think? any ideas of questions/further testing i can ask to be done? im at a loss and confused and frustrated. is it worth getting a second opinion?
also, if anyone can share their last resort/alternative treatments? im down that path now unfortunately and it scares the hell outta me.
god bless everyone,
love, myrnal (auckland, new zealand)