How this all began....
almost 8 yrs ago I had a bad fall, uneven sidewalk was to blame. After healing from a bad right ankle injury I started having muscle cramps and spasms from my left buttock down the back of my left leg when sitting too long. I would get up, take a walk and the pain would magically go away. The episodes continued to get worse and I ended up getting a lot of help from a chiropractor and massage therapist. My family doctor ordered a EMG test, and that was the first time I saw those words, Piriformis Syndrome. I believe this happened because my gait was off so much from the ankle injury.
For the next 6 years I was treated with massage therapy, chiropractic adjustments, SI joint injections, and did some behavior modifications in my life, such as doing office work with a stand up/sit down work station for office work. I went through seasons where this horrific sitting condition brothered me a lot, and sometimes not at all.
In May of 2015 I did a few things (exercise while laying on hard floor, carrying 25lb baby to much, and way too many squats during a home project) that changed my pain from coming and going, to constant. I strained my SI joint pretty bad. Was started on Norco, sent for injections and after 4 months was still having pain.
It was then then I sought help from a spine surgeon. I was sure I needed a Piriformis Muscle release surgery. They wanted me to go through the motions, physical therapy, SIJoint injections, and continued Norco for pain. After another 4 months passed, they told me I only had SI Joint dysfunction and not Piriformis syndrome. I was told I needed SI Joint fusion. They said this because my MRI on my spine, and X-rays were good. I showed no other problems with my back or any other reason for my pain. I was not completely convinced it was just the SI joint cause it all this dull achey , muscle cramp pain. But the pain was so bad, I'd do anything to stop it. During insurance evaluation for surgery, I was told, this was experimental for my cause of pain and they would not pay for it. This was extremely upsetting at the time, believing the doctor knew what would make me better and ins was so wrong.
Instead of learning to live with Chronic Pain, I researched any type of treatment that could help me. That is when I found PRP therapy. I found a rehab MD doctor 90 miles from my home that would do PRP therapy in my SIJoint. He first did a pelvic MRI because I am a woman, there can be other problems causing this type of pain. In August of 2016 I was the first patient this doctor did a PRP therapy injection on an SI joint. I took a week off work because it was hard to sit straight up. It took approx two months and I realized my pain was different. It shifted from lower back to just the left buttock and down the back of my left leg. I had had both types of pain for so long, it was hard to tell if it was SI or the piriformis muscle.
After discussions with my rehab doctor, he agreed, the SI joint dysfunction was healed from PRP therapy. It had healed an overstretched tendon. My Piriformis pain had come back with a vengeance. The piriformis muscle was treated with two injections which only gave me relief for about a week. My massage therapist was able to work on me and give me a few days pain relief, but because she had to go so deep to work at the siactic notch area, it left me feeling bruised. the rehab doctor checked with his 30+ surgeons and none of them had any experience with Piriformis surgery.
My surgeon hunt began. In all my research I found less than 20 surgeons in the USA that had experience doing this type of surgery. Thought I was going to have to travel to Texas, but Found one at a small Hospital in Cleveland. He said he would do nerve exploratory surgery. Based on my research, the surgeon never knows what they will find, the siactic notch can have so manny things going on in it, you want someone that will look at the whole area, with an open incision, so they can see what is going on. I had the surgery one week ago, 2/28/17. I have had no Piriformis pain since, only surgical pain which seems to get a little better each day.
The surgeon found fiberous tissue tissue holding the muscle tight, and the piriformis muscle was strangulating my siactic nerve. They cut them both loose. I have about a 5 inch inscision not far from my hip. I did wake up in a lot of pain in recovery, but my tolerance for pain meds had grown. In about two years time, I went from 1 to 4 pain pills a day just to function before surgery. So it was hard for them to get my pain under control. After one night in the hospital (because I had to travel so afar for surgery) I came home and feel a little better each day.
I am sharing this, because I know what so many are going through, searching for pain relief, the right doctors and a correct diagnosis.
They say Piriformis syndrome is rare, I truly believe this isn't as rare s they think, it's not seen by many doctors and since it doesn't show on tests results, hard for the doctors to believe in a condition they can't see.
Key points to remember
Get your MRIs , pelvic and lower back. Any other issues must be ruled out.
Injections for diagnostic. If the numbing helps, then you have something going on.
Talk to your doctor. If they have tunnel vision and don't want to think outside the box for treatment or possible other conditions, RUN! I almost got a joint fused because of a doctor like this.
Never give up, research, research, research!!! I ended up finding my surgeon at a smaller hospital because a doctor at a well know large hospital recommended him.
It took me 8 years of suffering to finally get fixed. My surgeon said my condition would have only gotten worse.
Dont be afraid of asking lots of questions. Piriformis Syndrome is not known by many doctors or. Urges, don't be afraid to explain it to them .