 Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | My wife went to work where I received radiation. As I deteriorated, they stopped inviting me to their get togethers. I was glad I didn't have to hear that comment, "at least you are still alive" one more fricking time! I never had to say anything. Now I have moved into the Wonderboy era because they want to know what I did to stay alive. LOL
I have been trying to get a company that uses something similar to the VitalStim for stroke recovery to see if their device works for radiation issues. Have you tried the VitalStim and speech therapy? I have had a couple rounds with them but planning some more as soon as I get the breathing dealt with. Too unsettling to not be able to breath at night for many months now. There are many things to try but you have to be more diligent while you still have voice left.
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
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