Tonya,

I am so happy to hear the news for David and your entire family! I know the road ahead is not going to be easy but I am so encouraged they have given David a road to travel down. In my heart of hearts if they believed what the OKC doctors believed, they would not be putting him through this tough of a surgery and recovery.

The jerking you are describing is something I have seen in myself and others with certain kinds of pain meds, especially at higher doses. Demerol and morphine are the absolute worst for me. I have also experienced the jaws just sort of twitching sometimes which causes me to clamp down on my tongue. Have they tried any NSAID's such as Bextra or any muslce relaxants? Also, is David using the Duragesic patches or more morphine. If they could get as much pain controlled as possible with the patch and try something a bit longer acting for the breakthrough pain, it may help. I am sure the pain management team is very good but I just thought I would throw it out there. I have seen some pretty violent twitching, as I call it, from higher doses of opiods.

I am hoping and praying for wisdom and guidance for the surgical team and the pain management team to give your brother the most comfortable and longest life possible!

Ed


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