Anyone have Radiation-Induced Brachial Plexus Neuropathy?

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

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

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

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

@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!

@craigbauer hi again it has been a bit of time that I didn’t write because I was doing research and I have been offered with a solution; Micro surgery and tendinitis Transfer from from my leg to my trapezoids so that it can replace my deltoid. I’ve been said that if everything goes right, I can lift my arm up to 30/40°. And as a second step (for my bicep), they will move the muscle from my elbow and move it to my biceps on papers it seems like a good plan, but I’m cross checking and then I will decide, did anyone at the similar surgery or has been offered similar surgery?

@omaest

Hi. I'm wondering if the Brachial Plexus and Cervical Spine MRI's showed anything.

I was diagnosed and treated (Right Tonsil) in 2008.

In the last 6-7 months I've started having difficulty sleeping due to what I think is due to Brachial Plexus caused neuropathy. Some nights one arm acts up, other nights the other and then some nights both.

My ENT suggested a visit to the physical therapy group. Haven't done that yet.

Any feedback is appreciated

The follow-up was to send me to a pain clinic which I didn't understand because I am in no pain, just the constant tingling and numbness down my right arm. And the inability to lift that arm in certain directions. However, I did go to the pain clinician (who is a MD) and now will be having another MRI on the right shoulder to see if I have a rotator cuff problem. I'll have that MRI on the 21st of this month and a follow-up with the pain doctor the 26th. In the meantime, I went back to a summary following an appointment with an ENT I had last summer. This summary included pages of information about late and long-term side effects of radiation. The list is long and since I've lived so long after cancer my experiences have almost run the gamut of the list. Take care and hang in there!

@jcl2018 Sorry to hear about your issues with sleeping. Hopefully that’s as bad as it gets. My situation sounds unfortunately similar to yours. My throat cancer treatments were completed I believe in 2008 as well and everything appeared to be going wonderfully until about 5 years ago when I was loosing mobility in my left arm. I was encouraged to go to physical therapy where I religiously did my exercises but saw no improvement. Then I went to Orthopedic who said, try these Cortisone shots. Did that, nothing got better. Finally Orthopedic ordered several MRI’s and their analysis was that I should go to Physical Therapy. When I protested that the previous inability of PT to help is what brought me to them, they sent me to a Neurologist. The neurological team poked and shocked me for over 4 hours, ordered more scans and then pretty much agreed that I probably have nerve damage from the 35 radiation treatments. Even my Oncologist has advised, “yeah we gave it to you pretty good” but was surprised that this was occurring so far out from the radiation treatments.

Since then, I’ve done some Occupational therapy, been seen by a Neurology Surgery, and currently receiving some Acupuncture treatments. The Occupational Therapist and Surgeon have no positive options to offer at this point.

I don’t offer my story as a negative, heck I’m happy to be alive and pretty functional but would advise you to see a Neurologist or two to determine if you do indeed have the Nerve Damage. I wasted at least 3 years of people telling me I had “frozen shoulder and we can fix this” and all the associated Physical therapy that did nothing. I hope you do have frozen shoulder, that’s pretty fixable.
As of today I’m still looking for a solution to improving the functionality of my left but not encouraged by the medical professionals I’ve seen. The positive is that my left arm doesn’t appear to be getting worse and my right arm is still pretty normal. If it stays that way, I can live with it. If you stumble into some magical solution, I believe most of us in this group would love you to share. I wish you continued improvement

omaest & craigbauer

Thank you for the feedback. While it does not replace Dr. visits, I've found that "benchmarking" with others who have been treated in the same timeframe as me is very valuable. It helps validate what we experience and can provide info on possible approaches. It seems to me, that treatment and cure of head and neck cancer has come a long way. Long term survivorship isn't really something that has caught up/is studied in detail. ........enough philosophy.

For what it's worth, I did find this presentation on the topic. It provides info on the issues although much of it is "above my pay grade" https://www.slideshare.net/slideshow/radiation-induced-brachial-plexus-neuropathy/235292991
Copy the link to your browser. You can scroll through the slides. I haven't downloaded

As little more background. I'm 66 and still active. My issues typically hit in the middle on the night. Mostly when I sleep on my side. They are worse if I am doing physical labor the day before. Many nights I get up and finish in a recliner. Some pain still crops up on occasion, but it is more manageable.

I do various stretching exercises every morning and jog most days. I don't experience major symptoms while I'm up and about during the day although I do occasionally feel a tingling in my hands.

So bottom line, I do think positioning when sleeping helps. Also, stretching and some physical activity is benefical in my case. Again, we're all different, so what helps me may not help you.

I will certainly post as I learn more.

Be well and thanks again.