Anyone have Radiation-Induced Brachial Plexus Neuropathy?

Posted by burakb @burakb, Sep 15 2:18pm

Hello All, I am looking for people has more experience on late developed RIBN. 3 years after my bilateral Radiotherapy on my neck; I started to feel tingling on the upper left arm (deltoid) , then it spread to my bicep and tricep and it got weaker within 6-8 months and within a year I completely lost the function of left arm but my hand works, I have numbness on first 3 finger, I got very evident atrophy on my left arm muscles; after some time it also stared spreading to my right arm in the exact sequence; I am on the 7th month. but since right is my dominant arm I think it will take longer then 8-9 months it is now functioning 20%, my hand is working as the left one. in this 18 moths, I have tried Japanese medication called Radicut -(Ederavon), Cortisone steroids, hydrotherapy, physiotherapy, acupuncture, various medications (neurotin ecc), vitamins but nothing has help… I am desperate for a help… did anyone recovered from this and how?

Interested in more discussions like this? Go to the Head & Neck Cancer Support Group.

omaest | @omaest | Dec 9 7:25am

In reply to @roblem "Hi @burakb, At age 39, I was officially Stage IVB T2N3M0 tonsil cancer on my left..." + (show)

@roblem

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.

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@roblem A question, you wrote about the Hugterra seeming to help within 5 days. Are you still using it and is it still helpful?

roblem | @roblem | Dec 9 3:39pm

In reply to @omaest "@roblem A question, you wrote about the Hugterra seeming to help within 5 days. Are you..." + (show)

Hi @omaest

Yes, I use it almost every day and definitely takes the edge off for me. I have been using it since August 1st. Only problem recently seems like the motor might be slowing down a little. I bought it on Amazon (lots of counterfeit items in general) and not directly from Hugterra.

Anything else let me know.

Rob

roblem | @roblem | Dec 9 3:46pm

In reply to @omaest "@roblem A question, you wrote about the Hugterra seeming to help within 5 days. Are you..." + (show)

Hi @omaest

Yes, I definitely still use it almost every day since August 1st. I only problem recently is that the motor seems not as strong as it used to be. I did buy it from Amazon which has a lot of counterfeits on its site (I just recently became aware of this problem for a lot of its items) and not directly from Hugterra. From what I saw on TV if the price is vastly different, its probably a counterfeit and now that I compare the two on Amazon $62 vs. $139 on Hugterra site.

Best,

Rob

burakb | @burakb | Dec 11 11:33am

In reply to @craigbauer "@roblem I’m currently dealing with some of the same issues. My left arm is pretty much..." + (show)

Hi @craigbauer, yes me too, I would love to hear even a slight positive comment from medical professionals but all I hear is I am lucky to be alive (not a little thing) but regarding to possible improvement we should keep on trying and share our experience; apparently Flexitouch is not a solution to my problem, that's what they told me form Tactile it is mostly used for drenagging the lymphoma liquid ... I have started Neurodynamics technique it is nerve gliding https://youtu.be/oYOASLgip28 , I am also doing Compex (electric stimulator) for the muscles and a manual therapy, I am also wearing a shoulder support to lift my shoulder up so that I try to minimize the sleeping effect on my fingers by decreasing the pressure on my radial nerve. it is very new tell but I did not see any miracle in the first week... I will keep you posted, hope to hear your ideas too

craigbauer | @craigbauer | Dec 15 9:08pm

In reply to @burakb "Hi @craigbauer, yes me too, I would love to hear even a slight positive comment from..." + (show)

@burakb Thanks for reaching out to me. I viewed your link and I am intrigued by the potential. I will do a little research and may even add some of those exercises to my routine. I’m really interested in your experiences moving forward. My acupuncture is not about a month in and I can tell you that the constant humming in my shoulders has all but been eliminated. I’m not sure I’ve gained any more mobility in my left arm but my Acupunturist advises, “it will take time and we’re looking for small and gradual improvements”. To add insult to this, acupuncture is only partially covered by my insurance and being a skeptic I’d like to think I would see better use of my arm before my bank account is emptied. I’m still optimistic it can help. I’d love to continue our journey in this battle and like you am happy to be on the right side of the dirt . My most immediate goal is to be able to pick up and hug my 18 month old grandson. I keep that thought in my mind as I work thru this. I’m also open to discussing with you further if you like to private message me, I ok with that. Keep the faith, chin up!

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