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Radiation induced Brachial-Plexus Peripheral Neuropathy Patients
I am looking for other post-Breast Cancer w/Radiation to the Breast and Lymph nodes, suffering from RIBN (Found this acronym from a UK Paper). Let me say I’m sorry for your pain.
My Story: I am 65 now, I had L Breast Cancer in 1997, followed by a Stem Cell Transplant at Fred Hutch in Seattle, then Radiation to Breast and lymph node area that had 3 bigger tumors . 2006, I woke up to severe burning pain down my left arm into my fingers. I was sent to my 1st neurologist that did not have a diagnoses, I was sent for hand therapy for 2 yrs even though I knew it was coming from the shoulder (But I learnt some good hand stretches). In the meantime, I found an Angel, in a Therapeutic Massage specialist, she found the knot under my L shoulder blade, (Brachial-plexus) and immediately relieved my pain. (We would find out later, the relief was at first good for months, then like now weeks to days. I was told by Drs my muscles are loosing blood because a neuroma is attached in the shoulder area.
I’d go to 2 more Neurologist, the final one took me 7 months to get into at UWMedical (with the push from my Oncologist). By then I’d lost over 25% of the dexterity of my hand. After tests and diagnoses, I started Ot/Pt to learn how to keep my L Hand/arm stretched, dexterity exercises, and how to use my right arm to compensate for my left, trying to clip my nails on my R hand is a big chore (I thank God I am Right handed). I was told that most PN stops at some point, but mine was moving, and still is. No surgery would be worth the risk of loosing nerves I need vs the ones that are DOA. And what I could loose.
Today, my L hand feels like I have an extra small rubber glove on and stretching my fingers is a chore). I have pain up to my elbow and a knot in my back (that was a pin point last June) and now constant. I do find getting into a routine that gets me up and moving, my meds (Gebapantin allergy, so I take 90mg of Cymbalta, Tylenol and Topically I use lidocaine and a roll on CBD oil (being 65, I put off for 3 years). With constant movement and stretching, I’m working through it. I volunteer at a Food Bank.
Now I have a Palliative Pain Specialist, my Massage Therapist, Oncologist, PT/OT and neurological team. And still my PN is moving through the Nerve Roots and Path. My hand is at 80% loss, pain runs down arm from neck sometimes like I’m shooting flames from my fingers, and some days my face is numb when the weather is dramatically changing, I’ve noted Barometric Pressure causes my pain to increase. My pinky and ring finger are 100% numb. If my hand gets cold, it’s very hard to regain warmth. Most people that know me, know why I wear one wool glove in 80 degree weather. They know the weather is changing.
I’d love to start a support and information thread. I don’t know anyone with this, it’s hard to Describe my symptoms. Im blessed with friends and family that give me empathy .
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Hi @robin0613
So update for you. Saw the neuromuscular specialist on Wednesday and got my EMG. Her findings were enough for me to get the official diagnosis of brachial plexus.
She was a real piece of work, much more into esoteric nerve diseases and really contemptuous of my "not very rare" problem and told me that "with good diet and taking care of your body I'm sure you'll be fine."
Luckily since the first neurologist had me loop in my radiologist, she's put me on steroids with a taper, we're doing trental and vitamin E, and I'm meeting on Tuesday with the hyperbaric oxygen treatment team to start that up here as soon as possible.
She got involved after the initial consultation with the neuromuscular neurologist, I think after I told her that the gal said the only treatments would be vitamin b and OT. 🙄
I saw my physical therapist for my cancer surgeries yesterday, and the lame neurologist also got me set up with OT which should start in June.
I asked the specialist what the timeline would be and she said oh every patient is unique, "you're special", and I asked her about continuation of care with her and she seemed surprised that I would think I would ever see her again. After that I asked the first neurologist if I could see him, since she said the only thing she would do is another nerve test if things regress, but alas my general neurologist feels way over his head so he declined, sadly.
I meet with my radiologist a week from Monday and I'm going to find somebody else at UCLA who can be my neurologist for all this, LOL.
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1 ReactionHi Seathink , When I just read your post I was shaking my head . I too am having bad experience after bad experience , with the oncologist not providing any help to me at all . She has not guided me on the thoracentesis appts , left it all up to me . Then after 4 calls , 4 days in a row , just to get booked in with them , so I can BREATHE , a new oncol is on the scene , and books me in at the other downtown area hospital , at the very opposite end of the county , and 1/2 hour appt time is overlapping !!!!! If these people cannot even get appts right why the heck do i want cancer care from them ??? Esp stage 4 !! It's so degrading , when I point this out to me , they offer another 3d day in a row , instead of picking either the 1st or 2nd day at either hospital , while I am already THERE . Arrrggggg. Not like we ever get around to the CANCER part of my treatment . Just so LAME , and unprofessional , to say the least . They have also given incorrect advice on B12 amounts to take ( huge overdose ) which I caught , have prescribed for a tiny bit of osteoporosis an "end stage renal failure calcium" prescription ( DON'T HAVE THAT LUCKILY ) which I did NOT take , etc etc etc . The nightmare continues ! I am losing my mind with their missteps , so dangerous and continual . How can I ever focus on getting better , with the endless constant STRESS they cause ? Just thought you maybe could relate with all this nonsense, and I wish you the very best for improvement . HUGS .
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1 ReactionHugs, @pjsfla it's the worst to get sh***y care when it'a freaking cancer! I feel you!!!
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3 ReactionsThank you so so so much . BIG HUGS to you , seathink . In regards to the oncol & crew , I feel like I am out here in Cancerworld alone . And , since my family has been so blessed healthy , and no ones had cancer , they are squeamish if I mention any of it ,so I haven't had much guidance with stage 4 , or much " I know how you feel " . My own Mom doesn't even know the truth . So TY TY TY for sayin that & being there !
If I may ask, what was the system cell transplant for or supposed to help with and did it?
That was supposed to read stem cell transplant. I tried to edit it but wasn't fast enough..sigh.
@robin0613 and @pjsfla, just checking in. How are you doing?
I am so sorry for the chaos around your health. My experience was never so severe as yours, but I found a marked difference in attention to my overall needs when I was transferred to a PA for one visit. I never returned to the oncologist, nor to the radiologist. Physicians Assistants may be a place to start.
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2 ReactionsIn 2004 I was diagnosed with advanced breast cancer, had chemo, lumpectomy, then radiation in 2005. This was at Baylor in Dallas TX. Yes, they saved my life! But in 2017 I started having tingling in my ring finger. I was in Idaho by then and my GP said just put a towel under my arm when I'm working at my desk. Things got worse, so I went to a hand doctor who said I probably had carpal, also arthritis (after he took exrays); suggested I use a brace for carpal. Went back, he ordered a neck exray, then referred me to neurosurgeon who said I my hand issue (which now was into ring and pinky finger and that side of my hand) was because of C7-8 and T1 disks compressing nerves. Did not recommend surgery, wasn't really interested in doing anything for me. Condition got continually worse, went to 2 other doctors, said hand surgery would be elective and because of Covid would have to wait. 3 years after that went back to neurologist. He ordered MRI and EMG. EMG doctor did tests and said he was almost 100% sure the issue was generated from the brachial plexus area from radiation. HE order cat scan and another MRI of brachial plexus area. The neurosurgeon's PA called me when results where in and said it looks like tumor on lung apex and in the brachial plexus. Scared the hell out of me as he starting going on about large cell vs. small cell lung cancer, I need a biopsy, etc. He ordered a cat scan. I asked my primary care doctor to find me an oncologist in light of this news. I saw the oncologist who did not feel it was cancer, looked more like scarring. He ordered PET scan and ultrasound. Results came in. No cancer, just scarring. Called neurologist to see what can be done (surgery, PT). That was 3 weeks ago. No call back. No communication. Nada. I'm lost now.
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2 ReactionsAsk oncologist to confer with the neurologist. Someone has dropped the ball.
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