MY POST-SURGICAL NEUROPATHY STORY

Hi, I'm Gail and new to the group. This is my neuropathy story. In May 2022, I had surgery to repair my mitral valve (a congenital defect). Despite the chance of serious complications being less than one percent, that's where I landed. Long story shortish, the right side of my heart didn't restart fully and I had to be put in a medically induced coma and on life support (ECMO and balloon pump) to recover. That was followed by multiple serious complications including pneumonia, sepsis, and the repaired valve became infected. They replaced the valve and waited while my heart regained strength so I could wean off ECMO and eventually, the balloon pump and RVAD (right ventricular assist device).

I was in the coma for about three weeks. My muscles atrophied to the point I couldn't lift a finger to press the nurse call button. Thankfully, my husband was by my side throughout, as much as he could be. I had to learn to walk again. When I regained consciousness, I noticed a tingling numbness in my feet and lower legs. They weren't certain about the cause, but the speculation was that while my body's vital organs were fighting for life, the periphery gets neglected out of necessity, causing the neuropathy due to lack of blood flow to those areas.

MEDS
Initially, I was on Gabapentin, going up to a very high dose. After a number of months, I weaned off the Gabapentin slowly, and didn't notice too much, if any, difference and I'm now on Duloxetine. I can notice if I take a pill late, so I think it's helping.

COMFORT LOTIONS
The lotions and balms I've found most helpful are Earthbound Remedies CBD Relief Balm (6000 mg full spectrum CBD), Doterra Deep Blue rub, and Sweet Bee Organics Sweet Sleep Magnesium Butter (original lavender). Nothing gets rid of the discomfort, it's 24/7 although luckily I'm not "aware" of it all the time, like when my mind is otherwise occupied or I'm doing something. But, all of these take the edge off, relieve some discomfort and pain, and are comforting.

SCENAR THERAPY
The other HUGE help I've found is called SCENAR therapy. When I realized I'd had the neuropathy for over a year, I started doing some research to see what else could help me. I was fortunate to come across SCENAR and a practitioner in my area. It's FDA approved, widely used in Europe and Asia, has been around since the 1960s or so. It was invented in Russia and was sent into space with the Cosmonauts. It's been improved upon ever since. Unfortunately, it's not widely available (yet) in the U.S. and not covered by insurance. I hope this changes with increased awareness.

It's electostimulation, not painful (a little sharp at times, but they can dial it down). If you've heard of TENS used in physical therapy, it's like that but many many times more advanced. From my first session, I was surprised to feel the ground beneath my feet more than I had since the hospital. Early on, I had more flexibility in my ankles and toes and heard my ankle 'crack' for the first time since. The extreme discomfort I had in socks and especially, shoes, subsided. The intensity of my numbness, tingling, occasional sharp, shooting pains, decreased over time and a number of sessions by at least 50 percent, I'd guess up to 70 percent. I'm planning to return for more.

I'm still hoping that it goes away completely at some point. I'll read more of what you all have to say. I know it will depend on why we have neuropathy. I'm lucky to be alive and I consider all of this bonus time. But, since it's OK to complain a little, it is frustrating, at times, feeling trapped with these sensations. My balance isn't as good as it was. I've slowed down, but still keep very active, doing my arm and leg PT a few times a week at our gym, and cardio machines like the treadmill and bike, walking outside and yoga. I feel that yoga is a necessity to keep my flexibility. Walking outside helps me in many ways. I feel better being in connection with nature.

I look forward to reading your stories and what helps you. Let me know if you have any questions and I'll do my best to answer. I'm sorry you're dealing with neuropathy. I'm glad to have found this group to connect with you. Hugs. (I'm 60, which is so odd to write)