 Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Everyone will develop neuropathy and depending on your awareness of your own body it can be a big deal or just discomfort. The alternative is no treatment. Also be aware of LeHermitte's sign. When you bend your head down while walking down stairs you will feel as if a lightening bolt is shooting up your spine. This is supposed to resolve but as everyone points out you never know how long and drugs can help but you may go through a slew before you find one that helps. Mine is still there 9 yrs later. Excercise those muscles and get the blood flowing. Ask about HBO treatment early if you had surgery too but if it persists. Check vitamin B1 as nerve damage can result and be permanent from low B1. You cannot take pills for this as it is water solvable and you need injections until it is up as well as checking B12. Water is now your best friend. Finding anyone to address this is perhaps the single biggest post treatment problem we face. Permanent nerve damage will only get worse and waiting may result in permanent damage. Be well but be diligent.
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
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