Brian, it sounds like you've been through the wringer. I am curious about your barrio-reflex dysfunction. I received a diagnosis of dysautonomia which is similar but extends to all autonomic nervous system functions like digestion, breathing, insulin mgt, protein synthesis, hormone loops, muscle tone, bp, heart rate. I have never had tests that confirmed but everyone points back to brain stem issues from radiation fibrosis. I also have damage to one lung causing extra secretions like cystic fibrosis.

I think the unbelievable part of all this is the doctors incessantly ignoring the symptoms and chasing a diagnostic code. The truth about widespread fibrosis/nerve/vascular damage from radiation causes very sporadic or random problems throughout the body. I am happy to be alive and I did sign all releases knowing there were risks but I also believed there was an underlying assumption that the people subjecting me to the risks also had experience and a plan of attack long term.

I have found the concept of "aftercare" is more of an afterthought. I have tried to encourage aftercare centers much like what the Livestrong Foundation was helping get started with their Centers for Excellence and to some degree the Livestrong at the Y program. Having such recovery oriented centers could be staffed by NP's or some PA's with kinesiologist type therapists/doctors to work on getting all the biomechanics re-established from the destruction of soft tissue throughout the body from chemo and radiation.

Yes tear me down and kill the beast but me build back up from all aspects of life.


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023