Hello,
My neurologist did an eContact with Mayo Neurology. I am waiting to hear from Mayo through my neurologist I am scared. I have had 4 back surgeries. My last was an L5/S1 fusion on June 08, 2019. In April my pain returned worse than before fusion. I did 2 epidural sessions and PT with no success.
I was then referred to the Unversity of Iowa Neurosurgery for a 2nd opinion. My Neurologist as not comfortable making another surgery recommendation.
She said due to the heart issues she wanted me to see the University. They did not see "conventional surgery options." They recommended a nerve stimulation placement in my back. (I have turned that down)
I went to the ER last Tuesday due to pain and was admitted to research meds I could take as an interim pain reliever. ( I do not like pain meds)
So, I am on the meds and waiting to hear from my Neurologist.
I don't know what I will do if Mayo says no.
My hope is that if the Neurologist who is looking at my information at Mayo passes it on to someone if she can't see a path.
I want off Oxy asap. I read 2 weeks is usually the max.
I was 98% fixed after fusion until the 2nd week in April.
Thanks,
LRLRL
Hi.
I too have had 4 back surgeries and had a spinal fusion at the L5-S1 as well in 2013. As soon as my back was recovering and having less pain, I developed a nonstop pain in my right big toe. It felt like my toe was a balloon that was over filled, or that someone was always standing on my toe. Nonstop. Unbearable to the point I had to start taking pain meds, including oxy. I was finally diagnosed with CRPS, or Complex Regional Pain Syndrome. It got worse and moved to left side of foot, developed neuropathy in my right foot, started having nerve pain coming from within my thighs, as if pins and needles were sticking out, and sometimes a sharp pain like a poker stick shoving into my lower back from my tailbone. So I know where you are coming from. I had a Medtronic Neurostimulator for over a year with implants lined up against each side of my spine. After literally 100s of adjustments, I had surgery to have it removed as it did not relieve any pain. So I can totally understand your pain and frustration. I have tried epidurals, acupuncture, laser therapy, PT, and I could go on and on.
I just recently started using MayoConnect, and it’s really helped me realize I’m not alone, and that Drs are hesitant to advise alternatives. My Neuro Dr, would respond to my alternative medical treatments with not much thought or response. Just hope it helps. They try their best, and when it comes to nerves and pain, there is still a lot of uncharted territory and that is why they usually throw their hands up and say- deal with it.
This site is an advocate for yourself, with others to offer support and options to help with your condition.
Just recently I have found that a treatment called Myofascial release therapy, or MFR, and it’s been very effective after a few treatments for me. It’s not a cure all, but it has dramatically reduced my pain to a tolerable level on many days. I would recommend that you research this therapy and locate a therapist who specializes in MFR.
Stay strong and with the help of the great coordinators here on Mayo Connect, they might be able to offer more options. Good luck. Mitch