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Anyone have Radiation-Induced Brachial Plexus Neuropathy?
Head & Neck Cancer | Last Active: 1 day ago | Replies (20)Comment receiving replies
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.
Replies to "Hi @burakb, At age 39, I was officially Stage IVB T2N3M0 tonsil cancer on my left..."
@roblem I’m currently dealing with some of the same issues. My left arm is pretty much unusable. Right arm is ok but not great. I’ve done physical therapy for quite awhile and didn’t really see any improvement, now I’m involved with acupuncture but it’s early. What bothers me the most, at least mentally is that I have yet to find any medical professional that is even minimally optimistic about any possible improvement. Hard for me to accept that. I’m also concerned about doing anything I can to stop it/slow it down from getting worse. I’d be interested in your journey and anything I might consider. Thanks!
Hi @roblem,
Your situation resembles what I have been going through since radiation and cancer treatment for tonsil (right) cancer in 2003. I was living a pretty normal life until the radiation effects started to pile up. Initially the problems were the loss of saliva glands, thyroid, and with that dry mouth and thick saliva. I was able to live a pretty normal life until the bone tissue in my right jaw started to deteriorate causing the loss of molars and my ability to eat many things. Then the swallow issues started and gradually worsened to the extent that I was aspirating and contacted aspiration pneumonia on a regular basis. Last summer, June 2024 I had a feeding tube implanted and now ALL of my nutrition is through that tube. I do have some coffee in the morning and I sip water when in need. The other malady is the tingling in my right arm and hand are getting worse and my ability to use the arm has gotten very poor. Also I am having real problems with my neck! This past Thursday I had a Brachial Plexus MRI and a Cervical Spine MRI because of these two issues. I will be getting the results early in the coming week. I have dizziness which I think comes from the neck issue. I am interested in the Hugterra ad how it helps. Wishing you the best as you travel along this unexpected path.
@roblem A question, you wrote about the Hugterra seeming to help within 5 days. Are you still using it and is it still helpful?
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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.