Bilateral below knee amputee- TMR & RPNI on saphenous nerve

Posted by debbilateraloi @debbilateraloi, 8 hours ago

I’m desperately seeking advice. I’m a bilateral below knee amputee fitted with titanium implants called Osseointegration 4 years ago.
I have in the past had TMR (target muscle regeneration) for removal of neuroma’s, which have been successful and quite painful free over a few weeks at most with Physio.
A year ago I had bilateral TMR with RPNI (Regenerative Peripheral Nerve Interface of the Sciatic nerve again for painful neuroma’s which was fine, walked out (left leg was abit more painful)
Fast forward year and I underwent another TMR & RPNI on the saphenous nerve for neuroma’s, and bleeding stoma with pain, in Sydney.
I’m 7 weeks ago post op now and been in excruciating pain. My knees are swollen so shiny they resemble bowling balls. They burn, pulse throb, and feel like they’re going to explode. The right size being the worst. I’m able to painstakingly walk myself to the toilet. I’m taking nerve meds and more opiates than ever before. I addressed this with my original surgeon whilst I was in hospital post few days, as I couldn’t stand without screaming. I continued following it up for the duration of my stay until he stopped seeing me so I left.- he gaslit me and put it down to arthritis in my knees from a scan I had 2 years ago.
Funny thing is normally I only have 1 leg done at anytime for surgery but this time I was very confidently told it was an easy tolerated procedure so both could be done as same time!
I tried going to my local hospital in Canberra but being a speciality (and disapproving OI) they could only offer me IVABs and pain relief (less to what I’m taking now) as I needed to return to original surgeon. The only proof I had which got me admitted was an MRI report (2 weeks as in patient) saying ‘post operative abscess, drainage needed, osteomyelitis, septic arthritis, blood tests with high infection markers, plus lots of other diagnostic imaging.
I was discharged from them to find another surgeon or someone to help.
I’m home, emotionally exhausted and in extreme pain.

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John, Volunteer Mentor | @johnbishop | 6 hours ago

Hello @debbilateraloi, Welcome to Connect. So sorry to hear that your original surgeon pulled a vanishing act on you and you haven't been able to find help. At 7 weeks post op for your surgery, I would think the swelling you describe for your knees is not normal. I've read that Australia does have patient advocates in your healthcare system which may help give you a path to finding help. Not sure if you have already seen these sites but they may be worth trying.

-- Your healthcare rights
https://www.healthdirect.gov.au/your-healthcare-rights
-- Health Consumer Advocacy and Support
https://www.medicinesaustralia.com.au/community/health-consumer-advocacy-and-support/
-- Patient AdvocateS, Australia Wide | Every City & Town ...
https://www.patientadvocates.com.au/index.html
-- Australian Patient Advocacy Alliance | APAA
https://apaa.au/about/
Do you have any friends or family that can help you find a doctor or surgeon to follow up on your recovery from the surgery?

debbilateraloi | @debbilateraloi | 2 hours ago

In reply to @johnbishop "Hello @debbilateraloi, Welcome to Connect. So sorry to hear that your original surgeon pulled a vanishing..." + (show)

@johnbishop thanyou. Yes I’ve tried 2 of these pathways when I was in our capital state but being that Osseointegration is a speciality no one operates I have no help with any .gov sites.
Maybe I’ll try the Advocate health consumer website. I have been in touch with a surgeon in Sydney then that led to someone else and then travel to Sydney isn’t an option unless it’s actual admission as my legs cannot travel the 6 hours return. Thanyou I’ll have a read of these sites 🙏