Anyone have Radiation-Induced Brachial Plexus Neuropathy?

Hi @burakb,
At age 39, I was officially Stage IVB T2N3M0 tonsil cancer on my left side caused by HPV and 3 infected lymph nodes. I am 17ys out (2008 diagnosis) where I had 35 rounds of Photon radiation which amounted to 70 Gy (7weeks) and 3 rounds of the platinum-based chemo Cisplatin.

I had other issues come up along the way with the radiation as it’s a gift that keeps on giving. So be very aware of what is going on inside your mouth and throat. To name a few off the top of my head, it destroyed my thyroid giving me Hypothyroidism (makes you feel fatigued and most of the time you gain weight too) so now I have to take a pill for it for the rest of my life. Watch your bone structure and tooth decay in that region too- so make sure you go to your dentist every six months. Paralyzed my left vocal cord so my voice is not as loud as it once was, and swallowing and speaking has gotten worse but going to a speech/swallowing therapist has helped as I can basically eat anything just may take longer depending on what it is. Scarring of both upper lungs. Had dry mouth so I researched and found Electrical Stimulation Acupuncture in 2015 where I was tested to get a baseline and retested after 8-10 appts. and had great results- never needed to go back and has been fine ever since and I don't have to carry a water bottle with me either. Since then, I believe there are other additional avenues like sprays to help with that.

My accessory spinal nerve is damaged (called Brachial Plexus Legions/Neuropathy) which is why my left shoulder sags and trapezius muscles wasting away with winging of the scapula which includes limited range of motion. What made it even worse was that I was diagnosed with Tongue cancer on my left side of my mouth on March 1, 2024, and had a left partial glossectomy with a radical forearm free flap surgery on April 3, 2024. It also included a modified radical neck dissection. I have since read some posts here and found a device on Amazon for $55.99 called Hugterra which after 5 days or so noticed it helped relieve some of those neuropathy symptoms and discomfort coming from neck and shoulders. It provides 15-minute daily sessions that blend massage, stretching, EMS, and heat therapy, enhancing circulation, relaxing tense muscles, and restoring the neck's natural curve.

Good luck on your journey.

Hi @roblem , thank you very much taking your time and sharing your experience and your advise; Photon radiation treatment back in days said to be very heavy, I have done my treatment more recently in 2021 with VMAT technique, which usually prevents this kind of RIBN; my case is considered rare... the disfunction of both arms is challenging, I am looking for someone that has gone trough this kind of experience and hopefully recovered and started using the their arms again and how they did this.

T3N0M0 Right vocal cord ca.. 35 rounds radiation, 5 cisplatin and 2 cytoplatin due to hearing loss. Approx 6 months after completing treatment left shoulder and arm became very painful and useable. A few months later this started in right shoulder and arm. I believe it was from lymphedema. I was manually doing lymphedema message which help a lot but now I have the flexitouch plus by tactile medical completely gone in right arm and very minor in right shoulder. This thing has changed my life. I finally feel normal again. It is around $7000 my insurance paid all but $500. It is now approved for head and neck patients.

Left shoulder and arm were unuseable

Hi @pfitziern,

I tried getting the Flexitouch pump device by Tactile also this year but was declined both times. The last time being a couple weeks ago with my appeal. I had Anthem insurance through my wife's employer as I am 56yrs. old.

What insurance did you have?

Health New England. Ur provider and rep r not filling paperwork out correctly. I’m sure. I sent my rep a text to ok with him before i give u his name and number out of courtesy. I sure u don't lie flat to sleep and have internal swelling we all do. I’ll ask my SLP if she does phone consultations as well. The rep and my SLP were awesome at getting me approved they denied me the first time and within 2 weeks I was approved.

@pfitziern , I have almost the exact same problems with my left shoulder and arm. Glad to hear your doing better with the Flexitouch. What is the best way for me to get better educated about this product?

CALL THE COMPANY THEY WILL DIRECT YOU TO THE NEAREST REP. I posted the contact numbers. Also, I just did a 40hr fast to reduce inflammation and I am for the first time in 8 months pain free. BTW, I did not use the Flexitouch Plus while I fasted to see if the fast would work. I have never felt better in my life. Fasting to at least 36hrs creates AUTOPHAGY which rids the body of damaged and precancerous cells. Yohiniori Ohsumi won the 2016 Nobel Prize in Physiology/Medicine for this. Tons of videos on YouTube and books on amazon. I will continue to use flexitouch and fasting most likely the rest of my life for these results. This is not medical advise it is my journey.