Just to clarify, the nerve sheath tumor wasn't doing anything to the nerve other than compressing it. There are many things that could compress a nerve and cause similar pain patterns. From my understanding, you'd want to follow the nerve path from the point of the pain closest to your spinal cord to your spinal cord and it is likely that somewhere/anywhere in that area is where the nerve compression is, whether it's from a tumor or tight muscle or whatever. For me, my pain went from the top of my inner thigh down to the back of my calf. In hindsight (always 20/20, I know), once I realized it was nerve pain and not a tight/injured muscle, I should've focused on the area from the top of my inner thigh and followed those nerve paths to my spinal cord. That would've helped me find that the root of the problem had to be somewhere in my abdominal/groin area. I hope that makes sense... It was so frustrating going down so many wrong paths and being told the pain was because I was stressed (aka it's all in your head), etc. I didn't feel like anyone took the time or thought to really try to figure it out - they just did their tests and referred me to someone else so I hope this helps someone to get pointed in the right direction...
I posted previously under the name "shopa" but can't keep up with my screen names and passwords. I swore that if I found an answer to my horrific, random, shocking pain that I would post my answer here because I have been following this thread for YEARS!!! I am finally totally pain free and I feel like I have a whole new life and am so relieved. As background and in case this helps anyone, I first noticed the pain about 2006. I did not notice a particular event that caused it. Over the years, the pain would come and go - a month with no pain, then a month of no sleep because of so much pain every single night, then a few random shocks here and there. I've had tons of tests and nerve blocks and physical therapy and everything else done and no answers. Finally massage therapist found the lump in my abdomen (psoas/illiaucus area) that I described in my previous post. When she pushed on it, it replicated all of the spots in my seemingly random pain pattern. She initially thought nerve entrapment and that something needed to be massaged out but after a few sessions, she said she wasn't making progress and encouraged me to talk with my dr. Had an MRI of my abdomen (all of the pain was in my leg, but the spot the massage therapist found was in my abdomen so this is the first time this area was investigated). They found a femoral nerve sheath tumor there. A nerve sheath tumor is somewhat rare and a tumor in that area is quite rare. Had surgery a month and a half ago to have it removed and am now totally completely pain free (aside from a little more healing to go at the incision site). It makes me tear up with happiness to have that pain gone because it was starting to control my life. I'm sure this is not the answer for everyone but very few doctors really know much about nerve sheath tumors. And what makes it so challenging is that the pain is not where the tumor is. (And, p.s. the tumor was totally benign.) Good luck to all and please let me know if I can help anyone by sharing any more information. I will keep up with this thread because I know how awful it was to have that pain.
Success! 6 months and no more 'electric shock' pains in my left knee. The cure for me? Taking my wallet out of my back pocket! I found that there is a medical basis for the 'fat wallet syndrome' which results from pressure on a nerve in the hip, and generates the unpredictable sharp, breath-taking pains in the side of the knee.
In general, when it comes to the spine, knees and hips, I suggest trying all types of physical therapy and life style adjustments first before moving on to surgery.
I recently had this terrible experience that many of you are describing - the electric shock pain behind the knee.
In my case, it appears I had a piriformus muscle spasm. This muscle is in your butt and can go into spasm from lifting/twisting. Since the sciatic nerve runs under or through the piriformus muscle, a muscle spasm can inflame the sciatic nerve and cause this exact sort of pain.
I have been having acupuncture treatments (just 2 so far) and the pain is gone. I also researched stretches for this muscle to prevent future spasm. I believe this may be the solution for many of you and encourage you to try acupuncture.
Correction: it was "shopa" that had the interesting theory on encapsulated nerve. I am going to see if my massage therapist can trigger the attcks by hitting the right spot.
Hi Pippa. My attcks have largely (but not completely) gone away. I went from 3-4 attacks per day to now just a couple time a month. They are always brought on by extended periods of sitting. I have pretty much changed my life similar to the way the post from "ehlet" described on this forum. I think he may be correct about the nerve flow or possibly the encapsulated nerve theory by "posey".
Either way the solution for me was less sitting and more moving. Eating healthier and losing some weight didn't hurt either. I now look at this problem more like nature's own personal trainer ...with a cattle prod...letting me know when it is time to get up and move.