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Piriformis Syndrome - SI Joint Dysfunction

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 .
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1

Comments

  • SavageSavage United StatesPosts: 7,385
    hello kajeana !
    thank you for sharing your story!
    it is so good to hear you are now doing well!
    and you also stress the need to never give up! ...to continue looking for help!

    please click on link for helpful information!
    Sue
    Honorary Spine-Health Moderator
    -------------------------------------------------------------------------------------------------------------------------
    Please read my medical history at: Medical History

  • Outstanding information. Thanks for sharing your story! Piriformis syndrome is indeed hard to get treated.
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  • Hi How wonderful to hear you have found relief for like you said a terrible thing to deal with. It is such a breath of fresh air to read someone who has struggled like you did for so long and thank heavens you pursued answers and found relief. 
    I was just reading about this kind of therapy and there is a few here in Utah that do it so maybe I will check one out. I have had pain for years and three years ago what I now am almost certain is Si joint stuff started wow a whole new world of pain. Finally found a therapist who got it as you are right there are few in the medical community who deal with or are trained. I too had so many injections, tests etc. then here on Spine Health I read the info. and insisted my doctor do some of the manual tests wow it sit it off. It is now getting recognized but from what I read and study so hard to pinpoint in a lot of cases. 
    Instead of learning to live with Chronic Pain, I researched any type of treatment that could help me but never came across what you are talking about.. That is when I found PRP therapy just the other day. I found a rehab MD doctor 90 miles from my home that would do PRP therapy in my SI Joint. So I will check into it further and I am so thankful you have been relieved of that pain. 
    Thanks so much for posting and hope you continue to let us know how you are doing or send me a private post I would love all the details and keep in touch.
    Take care and have a great day
    Sherri
  • Thank you all for your kind words! Yes Hope3, I would give PRP therapy a try. I forgot to mention, the surgeon who did my Piriformis muscle release surgery also uses PRP on all his surgeries. I didn't know this until they were preparing me for surgery and a MD assistant to the surgeon came over with a huge syringe to drawn a lot of blood. I asked him if it was for PRP and he said yes, my surgeon uses PRP all the time. It helps naturally heal the area he is working on. I was excited to find this out. Most cases I have read about with SI joint dysfunction, it's not the joint that is actually bad, it's the tendons that are overstretched. It's not cheap, but much better than getting a fusion. Funny, I drove 90 miles for my PRP injection. I had to go 250 miles in the other direction for my surgery. I'm on day 10 now and only using a cane when I leave the house. I get rechecked in 7 days, hopefully back to work in 10 days. 
  • Hi Kajeana
    I just am so excited to hear you are making that kind of progress. I will for sure keep that one in mind at this point in my progress I was taking therapy from a Therapist who was a supposed expert in Si joint issues but a new issue developed making me have to stop. But as soon as I get this under control I am back at it for sure. In reading so much info. about this area it seems to take forever if at all for anyone to find pain relief but I do think in the future it will improve.
    Please keep us posted so many times people find their solution but don't post on how they continue to do and I think that is so important. I will be saying a prayer for you that you continue and can have a great quality of life.
    Take care Sherri
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  • Will do, believe me I have researched over and over and most of my knowledge came from reading so many posts on others experience. May I suggest a few home remedies that helped me make it through each day? First one is deep ice. Fill some styrofoam cups with water and freeze them. Pull out a frozen one and sit on the toilet (this is so the melted ice falls in the toilet). Peel away about half of the cup, then hold bottom of cup and rub the painful soft tissue area your pain is coming from, not directly on the bone. Rub the area until its numb. Instant pain relief!! Second, take two washcloths and sew together like a little pillow. Fill halfway with rice and sew shut. Or use an old long sock, fill with rice 3/4 way and tie shut (use sock if you don't have access to sewing machine). Heat it in the microwave for 3-5 min, depending on how hot you like it, and put where your pain is and enjoy. This is moist heat and I had to use it everyday for past 6 months off an on all day and went to sleep with it on. Hopefully one or both of these will give you some relief. 
  • The user and all related content has been deleted.
  • In my research I learned that if you get one joint fused, sometimes  other joints close to it will take on the work/purpose of the fused joint since it doesn't work anymore, this can cause other problems. I realize some folks have to get a fusion for pain relief, but in my case, my joint was healthy, it was a bad tendon and muscle. I also have read that piriformis syndrome has shown up in a lot of folks that have had previous back surgery. There are some doctors that I had that do not believe this condition exists, or they don't believe surgery helps. I am 12 days post op now and continue to only have surgery pain which gets better each day. I see my surgeon this Friday for a checkup. I am going to ask him to please write a paper, or speak at a conference, or find a way to share his knowledge. When someone at Cleveland Clinic referred me to him, outside their own  hospital, that's a pretty high recommendation. I hope he is or will share his knowledge. 
  • dilaurodilauro ConnecticutPosts: 13,518
    Piriformis syndrome is not really that much of a rare disorder.  You can just search here to see how many patients have this and the many various articles, videos and blogs written about it here. What seems uncommon is the surgery for it.
    wikipedia said:

    For rare cases with unrelenting chronic pain, surgery may be recommended. Surgical release of the piriformis muscle is often effective
    Ron DiLauro Veritas-Health Forums Manager
    I am not a medical professional. I comment on personal experiences 
  • What I have found  is there is a lot of information regarding this condition but in the numerous doctor's I have seen they don't even bring it up  when the symptoms are there. The doctor who did my last three injections told me there are only two doctor's here in Utah who even do any surgery in that area. How long ago was Si joint added to the conditions here on Spine health does not seem that long ago but could be my memory. So many times in reading and discussions with doctors many back surgeries are performed only to find out the pain is being generated from the Si joint or surrounding areas. 
    I am just saying in the last two years or less Ron I have seen so many of the web-sites now including this problem with solutions I have never heard of which is great to see. The bigger issue for me is no matter what tests are taken MRI's, x-rays etc. it can go totally un-detected and so many do not even attempt the manual tests which can red flag the condition right off.
    Just me have a great day
    Sherri
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