Living with Neuropathy - Welcome to the group

@hopeful33250
Hi Teresa,
You are very welcome.
Sadly, many people who have any kind of surgery will start to do things 'they shouldn't' because they are feeling better or the outside scars have healed.
Even if the post-op tests show you are healed, we have to remember that the cut areas are weak.
They are not as strong as they were before you were injured and/or operated on.
Way back, I had surgery on my left shoulder to repair a tear (thank goodness, not my rotator cuff).
When I went back after a few weeks and some time in PT, the surgeon said I was healed and could return to my usual exercise activities which included weights.
My PT said NO!!!!
Guess who I listened to?
My surgeon.
I felt good and wanted back to weights.
Within 3 months, I was back at the surgeon with pain in my shoulder.
You guessed it, I reinjured my shoulder and needed another surgery.
This time, the surgery was going to be worse because the tear extended further.
That is when I learned my lesson about being patient and waiting.

Happy Sunday!
Ronnie (GRANDMAr)

@kanaazpereira
Hi!
That is very interesting!
I had cervical surgery the end of February 2018.
I had C5/6 replaced.
My pain went away and all the other symptoms.
The recovery was a snap.
Then in June 2018, I noticed, when my foot was flat, that I could not move my foot from side to side.
I also noticed my big toe felt a bit numb.
I started to feel like my toes and the ball of my foot were getting numb, but I was still able to move my toes.
I couldn't however, stand on my toes or the heals of my foot.
I then had my lumbar surgery October 2018.
My legs became weak, my big toe no longer moves and my toes and the ball of my foot are numb, but I can still wiggle my toes a bit.
I am now having issues with my left foot, too.
It is not as bad as the right foot, but I am sure it will catch up.
My neurosurgeon is stumped.
He sent me to a neurologist for an eval and for nerve tests.
I do have severe nerve damage in both legs, but not the ones that lead to the feet.
He send me to a vascular surgone for an eval and vascular tests.
I do have a blockage in each leg but that only accounts for the swelling.
I had an ablation on my right foot but it did not seem to help.
Will see the doc again, soon..
As a last resort, I am having a brain scan to make sure I haven't had a stroke or that there is something else going on in there.
I am just waiting for the insurance to approve it.
I've also had a bunch of other tests.
I am mystifying the docs!
So, I wear a brace when I do a lot of walking and that helps a lot!
I am sure I'll need one for my left foot, too, sooner or later.
I also use a cane.
I am going to start PT, again, this time to try to help with my balance since I've fallen a few times.

Well, that's my story and I'm sticking to it (LOL)!
Have a great evening!
Ronnie (GRANDMAr)

Here’s a more recent article that describes "Neuropathic Pain after Spinal Surgery" https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5573860/

Good video! Would my nerve conduction studies reveal the information above? My neurologist is leaning toward a Parsonage Turner Syndrome but has now encouraged me to go to a Mayo Clinic for further diagnosis.

@kimchi19, that would be a good question for your neurologist. I think it's great that your neurologist is recommending that you go to the Mayo Clinic for further diagnosis. Can you get a referral from your neurologist to the Mayo Clinic?

If you would like to seek help from Mayo Clinic, contact one of the appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

Hi to everyone who is suffering or in the process of recovering I am also stumping the doctors. I have horrific pain in my left foot, ankle and leg. My foot toes and ankle are so swollen I cannot put shoes on. The severe swelling and pain and numbness began over 6 months ago. Actually the numbness and heaviness over a year ago. I was sure I had peripheral neuropathy but obviously doctor did not think so until nerve conduction test done in March proved it so. I have had one visit to a neurologist and she did blood work which included an ANA test to look for autoimmune disease. I see her tomorrow to go over the results. In the meantime I have seen 2 nerve specialists and have venus insufficiency. no clots and according to one I have lymphedema. I have not had cancer or cancer treatment. I went to lymphedema therapy for a month, hated it and found no relief from the pain or swelling. One vein doctor is ordering me the lymphedema pump and I am trying my best to wear compression stockings. The pain rates a 10 plus at times and pain doctor did prescribe percocet which helps briefly. I was also referred to an orthopedic surgeon to rule out whatever. I saw him today. Yes, he says my foot. toes ankle and leg are swollen, but he is stumped as to the severity of pain as he bent my foot and I pushed back in pain. I a sure this is not exactly what he said, but this is exactly what I heard from all so far. "Your old. You have alot of issues and they are hitting you hard. I can't explain it. Just eat worms and die" I now bring my young niece to appointments with me so she can tell what they really say and so far I am not off by much. I knew nothing of lymphedema until one doctor said I had it. When I returned for my 2nd appt I asked why no one was testing me for lymph node problems. He said I should be but obviously he was not the one to do that. My primary care physician has referred me for a CAT scan of lymph nodes on Friday June 21. Can anyone tell me if peripheral neuropathy can cause this pain and hurt all over my body and can lymphedema come about with damaged lymph nodes. My life has turned upside down and I don't know where to go from here.

@summertime4 lymphedema is caused by a lymph node in one or both legs. There is a lymph node in each leg. The lymph node is supposed to clear out certain problems and when it does not work right your leg swells. There are exercises you can do to help with it. If in a bed try using the headboard to walk your swollen leg up. Your waist should be against the headboard with legs up at a 90 degree angle. Stay in this position for 3-5 minutes. Do this 2-3 times a day. If in a chair use an ottoman or recliner with pillows under your legs to lift them even higher. There are some other exercises to try if you are interested.

@summertime4 I also was diagnosed with lymphedema early last year. Primarily it's just my right leg and foot that are affected but I do have swelling in the left leg also, just not as much. The therapy prescribed for me was wearing 20 to 30 mg compression socks which reduce the swelling overnight and then helps minimize it during the day. They did a lymphoscintagram test to check the lymph system to see if their was any blockage but there was none. Did you have a lymphoscintagram test done also? This test will check the lymph system. Mine was diagnosed at Rochester Mayo Clinic by a cardiovascular doctor.

I do have a couple of zippered compression socks which are a little easier to get on. They came in handy after I had a knee replacement this April and my right knee and leg were swollen because I could wear the compression socks on the right leg...couldn't get them on for a week or so after the surgery.

Thank you John. I have not had any tests done to confirm the diagnosis of lymphedema. A vein doctor told me just by looking at it. After some conversation I am having a CAT scan done on Friday, June 21. I hear you saying you have nothing wrong with your lymph nodes, but you are diagnosed with lymphedema? Do you have severe pain in the foot and leg affected? You are also wearing the compression stocking to bed? I cannot get the 20-30 mg on yet. Sometimes the compression hurts more and them I am told it is because of the neuropathy.

Yes compression can hurt. They also recommend using the legging that inflates and deflates such as is used after surgery. They are expensive and hard to get at home. That is why if possible, to have your legs elevated is a good choice.