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Aug 3, 2022 03:09PM
elizabethart
wrote:
I haven't been on this forum since 2012 or 2013, and had to log on with a different name since I had forgotten mine, but I have some good news about my stabbing pain neuropathy. I'm happy to answer questions.
My pain is along the intercostal nerve, and if you really dig into googling "intercostal neuropathy/neuralgia mastectomy,' you might also find the info I recently found. Here's my experience with using some off-label anti-convulsant prescriptions, the first thing that has worked for me in 11 years.
I have had severe intercostal neuropathy since my bilateral mastectomy in 2011 because of my intercostal nerve being damaged on my left side (the right side mastectomy was prophylactic, so I don't think it was as severe a dissection).
No doctor made this diagnosis, no one seemed to know or understand the pain, and I've been through multiple PTs rounds, nerve blocks, nerve ablations, gabapentin, Lyrical, plus lots of other drugs.
My worst pain is under my left shoulder (scapula) in my back, with a stabbing pain that comes on strong then abates for 20 or so seconds, then feels like being stabbed again. This pain is completely off, threatening, or at 100%. There is no aching, no in-between. It ramps up quickly, and anything done with my arms brings it on. I am an artist and jeweler, and it has been very difficult to deal with. The pain makes me slightly nauseous and feel a bit frantic.
What has worked? Jamming something under my scapula can somewhat ease the pain slightly. I live in my TENS unit, though putting it on my back/shoulder accurately myself is a PITA. Tylenol 3 or other codeine pills work, but who wants to be constipated all the time, plus endure the passive aggressive pain clinic staff...
I also have a different pain in my left breast, in a horizontal line near my armpit. Whenever I wear any top that is a little tight, it feels like I'm being grabbed by pliers that are being twisted. I have dealt with this by wearing really big clothes. I can't wear a bra under any circumstances.
Finally, my third neurologist (a man, "I guess it is neuropathy", has done no looking into my case as far as I can tell), wasn't available, and I saw a PA. She told me about an anti-convulsant called Oxcarbazepine which was used off label sometimes for neuropathy.
What bliss..from the first dose I could work hard until 2-3pm with no pain, and if I wasn't going gung ho, sometimes made it through the day. She upped the prescription and I could go all day, and into the night (I do juried arts festivals, and work in spurts making pieces).
Then, a few weeks later, I thought I was having a stroke or heart attack. Felt like a painful anxiety attack in my chest. As it turns out, my sodium and potassium had fallen dangerously low (this medicine is know for it). I spent 3 days in the hospital while they slowly brought my sodium up, as neurological damage can happen if sodium is raised too quickly.
After going off the medication, the nerves were upset. My back was itching as the nerves regenerated or whatever was going on without the medicine. I was back to living in my TENS, and the pain was frequent and as bad as ever.
After I was given the all-clear, the Neurology PA prescribed Lamictal, which is in the same classification of drugs of Oxcarbazepine. It is not quite as effective, but it is helping. I asked today to have the dosage upped, and am waiting for a response.
And I was fully willing to go back to the original drug, the one that put me in the hospital. And I'm sure most of you understand that...if you haven't felt normal and have been in pain for years and years, it's seems worth anything to get back to "normal." But the PA wasn't comfortable with that.
*PSA...If you get put on Oxcarbazepine, insist on regular sodium and potassium level bloodwork!*
I have hope, finally, after 11 years dealing with this pain. I hope all of you find relief, and doctors and PAs that believe you and work to heal you. And I hope this helps someone find relief who may be suffering from the same pain with no relief.
One more piece...my nephrologist (as kidneys are the base of everything) in the hospital, who had final say in my care and release, told me that I had exhausted every medical option in this area, and that it was time to find a "center of excellence" for neuropathy. This is a center that treats neuropathy with multiple doctors in various fields. So a pharmacologist, neurologist, anesthetist, and other doctors work together to diagnose and find options. My closest option is Penn, and I plan to go there if this medicine doesn't work out as I'm hoping it will.
xo
