"Rubbery" Legs?

Please…pay attention…neurosurgeons are trained to cut. How goes that old adage, A carpenter with a hammer….everything looks like it has to be fixed with a nail! See an orthopedist or a neurologist whose mindset isn’t ready to cut. Besides, surgery pays a physician a lot more than they’re prescribing anything else to give you relief.
I had spinal surgery for scoliosis, many years ago, open back style before minimally invasive was a thing, and the surgery crippled me, ruined my career and my life. I’m 82 now and have learned to live disabled for decades. Many doctors would find late 70s spine surgery unadvisable. A fusion may be involved. But even the affect of anesthesia on an elderly brain is questionable. There are other ways to treat compression of nerves, do some research. Physical therapy; injections of cortisone; losing weight; adjustments to diet. Do see another opinion with a health provider whose orientation is to cut. Today, many chiropractors have non-invasive equipment that can gently stretch out your spine while you lie on a “bed” and in a couple or few sessions, may open the space between the vertebra so that the nerves that are squeezed will be relieved. I’ve used such a table and found the feeling wonderful!

It is so easy to think it is all so very discouraging. Even though I've done the crazymaking go-around of different doctors and different rests (perhaps not nearly as many as others have), I'm still refusing to give up. If I can only manage to slow down the progression of my PN, I'll be a happy camper. Steps without handrails have been my bugaboo from the very start. In fact, my dread of "naked" steps was the reason I quit acting. On the evening of our first rehearsal (three years ago), I took the set designer aside and asked if he'd make sure that any steps that he might be planning would have handrails. That night driving home, I thought to myself, "That's it, Ray! Never before have you asked for an accommodation to be made in a set. It's time to retire!"

Hello, all!

Some of you know I had a 12-month follow-up with my neurosurgeon yesterday. A year ago, an MRI showed some spinal cord compression (spinal stenosis of the cervical region), but the doctor told me two key things: (1) the compression might not be the cause of my balance problems –– I'd yet to be diagnosed with PN), and (2) that if were to operate to relieve the compression I might find after recovery that I still had my balance problems. A fresh MRI done in advance of yesterday's meeting revealed that the compression had worsened –– not yet urgent, but if I wanted to be eligible for outpatient surgery while still eligible (I'm 78, and otherwise healthy) sooner rather than later might be the way to go. The doctor again emphasized –– and I assured him I fully understood –– that surgery might be of no help with my PN –– it might, but then again it might not. I'm thinking of this as good-sense preventative doctoring: to avoid future and more serious damage to my spinal cord. And who knows? The surgery might actually help with my PN. I can dream, can't I? LOL! Although I am feeling positive about having the surgery, I will still seek a second opinion from another of my neurology doctors. The earliest I could have outpatient surgery is June 27, so I've time to think.

Ray (@ray666)

Upon reading this, it made me angry that a doctor would yell at you for using the walker in his office. I would have told him where he could go and walked out! That was so unprofessional of him! You are lucky you are able to walk some on your own. What I wouldn’t give to be able to walk, even just a short distance, with a cane. I lost all ability to walk on my own when I had chemo. I only had three treatments but it destroyed both my feet and hands and my back is weak now and it won’t hold me up. I have a love hate relationship with my walker. I’m grateful I have it in my home but for longer walking sessions I hate it. My arms ache so much from using it. My physiotherapist feels that I need a deep massage to loosen up my tight neck and shoulder muscles. I have gone twice now to the same person for help with this but she doesn’t seem to know what a deep massage is. I am on a blood thinner so maybe she is afraid of bruising me but she is doing nothing to help fix my tight muscles. Both my feet are dropped and a podiatrist told me they are actually paralyzed. I use AFOs in my shoes to aid in walking. I have come to the conclusion that this is an affliction I will have to accept and carry on with my life the best I can. It was nice hearing from you. Next time a doctor talks to you like that you get up and leave. Use your walker to keep yourself safe. That’s the important thing. A fall could really hurt you worse than you are now. Take care an God bless you!

I know that doctor was an exception, based on experiences I've had anyway. But I decided that since we only have precious few minutes with our doctors, going forward I want them to see my stronger, positive, more determined side, and not risk getting an inferior care decision made because of a perceived weakness. I was fortunate not to need that surgery; if I had ended up "needing" it to prolong life, I honestly believe he wouldn't have done it. At the time I was 55 years old; the sudden Neuropathy came on 3 years before that, and I was fit/thin & athletic, a long distance runner and avid cyclist.
So, I didn't need him and was moving to another state anyway; but I sadly found out during the move that I had throat cancer. My new doctors in my new state, esp. the Thoracic Oncologist, of course were going to treat me, but with my Neuropathy warned me & coached me hard about the need for me to stay strong, exercise, and eat & drink despite the pain. It was a given that treatment causes Neuropathy in a lot of patients, and here I was already having an Idiopathic Neuropathy before cancer treatment. I could not get weak and slide. They said most patients lose 20-30 pounds. They implanted a feeding tube in advance of chemo-radiation to make sure I would maintain nutrition and hydration but begged me to not give up swallowing. I am proud to say I ate soft food, drank 1700 calories of Ensure per day & never even needed to use my feeding tube. After my last treatment, I recorded in at 5 pounds heavier than the process that started 4 months earlier! My Oncologist said he only had one other patient actually gain weight during throat cancer treatment. Even better, I am cancer free for 2+ years, and in some odd way, I feel like my Neuropathy got a tad bit better (I can't help but wonder if it was the Immunotherapy)
I think the cancer fight is what has added to my determination. As you know, it's quite a battle, and is very hard for us to get back up afterward. I don't want my healthcare providers to doubt my ability to endure what's needed for my optimal care if faced with uncertainty again. I feel so badly for you with the major setback you've had. Please don't give up trying. For your massage - have you tried Myofascial Release Therapy? One of our mentors is a huge advocate for it. She has provided lists of certified therapists, but none have been reasonably close to the places I've lived. If they did, I would be scheduling with them. Might that be an option where you live?

I am 77 and have had PN for 13 years. During the last six months tingling has moved from toes to calves. Also, my quads feel sore after walking and getting up in the morning. There is some it band pain. Legs feel weak. Back is also sore from previous herniated lumbar disc. I am afraid to stop walking despite pain and weakness. No can yet. I walk everyday a few miles. Do you think my quad pain is overuse and not PN. Do you feel exercise slows the progression. I fear losing mobility while trying to take care of my wife with early dementia

@ray666 I am no medical professional, but I experience the same and I'm in PT for balance, they have me doing leg strengthening exercises. My only guess is that because of the PN in lower extremities, it can affect the muscles as well...thus weakness.