Hello Hopeless -

Thank you for your reply. How did you discover your MP was caused by your surgery? What kind of injections are you receiving?

I hope the same for you... that you get some help to give you relief. I am sorry this has been a long term problem for you.

Lisa

Hi Lisa,

It was good to hear from you. Yes, MP is common but very often an elusive diagnosis. It would take a book for me to relay my experiences and frustations of the 30 plus years with my MP. The good thing about it is the fact that the intensity does vary with me unless I have really made the LFCN angry. Walking and standing create the highest level of pain for me. Years ago, if I would take immediate action upon the first signals that it was escalating and immediately sat down for a while, the pain would subside. If I was not able for whatever reason to sit immediately, the pain would just keep going until it was so unbearable that I wanted to amputate my own leg on the spot, anything to stop the pain. Once I hit those intense levels, there was NO relief by sitting. I describe it as having "fried" the nerve. It was so fried one time, it put me in bed, literally, for a week. Those were the good ole days when it was intermittent. Intermittant meant everyday but not ALL day. As long as I could get in a "sitting" position off and on, I was only in pain off and on during the day. Then it continued to progress as more months and years passed. Intermittant has turned into constant but with various degrees of intensity. Walking and standing are still the highest levels for me and I can only stand or walk for about 5 minutes. Sitting is a little less intensity and I can do that for about an hour. Even laying down is painful but that has the least intensity unless the nerve is angry. I can be in a sound sleep and be rudely awoken by a lightning bolt type of electrical current from my hip to my knee. It is like having a stun gun hit you. The burning is relentless.

To be continued......
Hopeless

When I get asked how the "tingling" has been........ WHAT tingling? I do not have "tingling". I have electrical shocks. The word "tingling" makes me think of how your foot or leg feels when you sat on it and it "went to sleep". You attempt to stand and you get the pins and needles, tingling until it wakes up throughly. I do not get those types of pins and needles. I get "shocked". I have constant burning. In 2000, my MRI showed a herniated disc and they wanted to operate but I knew that my disc herniation was NOT the culprit of my leg pain. I declined. They insisted I try a spinal nerve block. It did nothing but create a marble sized lump next to my spinal column for the past 13 years. I have been seeing a pain mgt doc and we tried a nerve block directly into the LFCN. Wow, the minute he withdrew the needle, NO pain. First time in decades of NO pain. I had forgotten what that felt like. After getting home, I took a nap and was awoken with the lightning type bolt of electricity. Thought I was dreaming because when I went to sleep I had NO pain. Well, the anesthetic wore off within hours and I was back to square one. To be continued......

Hi Lisa,

I am back. Part 3
My doc and I both wanted to try a second time with a direct nerve block into the LFCN. He used different combo of meds in the injection the 2nd time. At first there was NO benefit. A week past and NO benefit. After about 10-14 days I began to sleep without being jolted by electrical shocks. I could sit for about 90 minutes. I made it through a grocery trip without crying in pain. I was getting close to the unbearable stage but made it out of the store before desires for amputation. Since I experienced about a 20-30% improvement with the 2nd injection, we are going for a third next month.

All prior efforts at relief had failed so I am glad for the injections. Went through physical therapy, aqua therapy, spinal blocks, Lyrica and neurontin meds, TENS unit, pain patches, etc. etc. The injections directly into the LFCN have been the ONLY thing to give me any relief. My only expectation from the injections is temporary "calming" of the nerve and I will be happy with that and will be glad to repeat it as often as possible.

Topical cataimine/gabapentin cream! These have help many people with nerve disorders that do not want to take gabapentin orally.

Calamare treatment based from doctors in NJ, Cleveland clinic has one now as well because it was helping the CRPS patients so well.

I tried lots of steroid injections, all it did was give me diabetes. We did 6 months worth in 4 weeks, because of cross appointment scheduling. Never lasted long enough to be worth it.

Because of the weight gain because walking/standing exercising causes more problems than it fixed, the neurosurgeon and I decided to try to release the nerve. Once he got in there because of the 15+ years of damage the nerve was too damaged to be repaired. So he cut it just above the hip. This is where I learned what MP was all about, and how it is truly just light touch. It has been so long with normal feeling it feels no different except the tearing burning is now gone. I still feel pressure, there is no muscle control. I just do not feel the hair on my leg. Still not sure about heat and cold after 2 years.. I have not felt that in a decade on that area anyway.

Deep water aerobic before surgery was so helpful for general aching.. And just relaxing.. Getting in the pool with a floatations belt taking the weight off my hip was better than opioids sometimes