Thanks for the article, Paul! The drug he was on was alendronate which contains nitrogen. The rate of ORN, in the article, of IV bisphosphonates was 12% vs oral at .04%. This is consistent with all the studies I read. The guy in the study also had radiation but not directly to the mandible from what I could tell. This is consistent with what I am experiencing with the cervical spine and maybe more. I stopped getting scans because of the breathing issues. It really took away all the worry not knowing. Funny how that works.

I am convinced blood supply issues from the radiation is what is causing all my problems, as well as all serious late effects of radiation. I believe I have a pretty compelling case getting ready to present to some doctors at the major cancer center here. I was able to effect changes in autonomic nervous system functions by modulating my heart rate and able to reduce functions and cause neuropathies around the brain stem by not forcing the heart rate up. I can duplicate this pretty much at will now.

There are only 2 non-nitrogen bisphosphonates and I was using one because I believe the nitric acid cycle causes metabolic issues because they interfere with ATP (adenosine triphosphate) as the article above suggests as well. This article just gives more credence to what I am doing. If I can get an RO excited enough about this, maybe we can apply for some funding to research it further. I believe I have a few blood chemistry tests that may be used as a baseline to gauge success of a variety of possible treatment options.

If I could get into the autonomic nervous system center at Vanderbilt, they could measure ANS functionality with some of the physical things I've been able to duplicate to help understand this better. It explains the baroreceptor dysfunction studies that were all out of Vandy, too.

I know I'm in the right track, I just hope I can push the boulder further up the hill before the heart or cardiovascular system in general fails.

I'm very interested in hearing your results, especially the EMG's. Had my muscles not atrophied in the back, I believe they would have diagnosed me with ALS, which I don't have. They were too worried of puncturing a lung to proceed.

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