Wednesday, February 15, 2012

Update on SIJD Treatment

Thank you for all your prayers, emails, and encouraging words as my husband and I traveled to see a PT who specializes in sacroiliac joint dysfunction (SIJD). The trip was a little disappointing, but we trust God ordained this experience for a reason and only time will tell if the treatment helps my pain.

This PT agrees with the other 6 PTs I've seen that I have sacroiliac joint dysfunction (here is a picture of the SI joint in case you are unfamiliar with the anatomy). This joint is a movable joint like other joints in the body, but the degree of motion is debatable depending on what sources you look at. The surrounding ligaments and muscles are supposed to stabilize the joint so that it when it moves it goes back to it's proper alignment. But sometimes the joint gets "stuck" and doesn't move properly or moves too much and this causes SIJD. This can be caused by a variety of issues including arthritis to the joint, joint capsule tear, or ligament laxity (meaning the ligaments do not hold the joint in place). Ligament laxity happens during pregnancy to make room for the expanding baby, and while most women's ligaments tighten back after delivery/nursing some do not. I went to a PT at about 6 months postpartum (see more about that experience here), while I was still nursing my daughter, and that PT found SIJD, although I wasn't having pain in the typical area associated with SIJD. I think that it is very likely that the technique the PT used actually tore or further stretched an already lax ligament leading to a much worse situation and increase in pain. Unfortunately ligaments are not usually visualized well on MRI so if there was a tear, it could have easily been missed.

The PT I saw feels that my widespread muscle pain (I literally have pain from my head to my toes at times) is caused by something called malalignment syndrome. She gave me a handout from this book which was pretty eye opening and it made sense why some of my random pains seem to come and go and especially why I have been dealing with such bad leg pain. The way to treat malalignment syndrome is to get the pelvis to stay in the proper alignment, which is often easier said than done especially when the condition has become chronic like mine. The therapist has a standard 6 week protocol she puts her SIJD patients, however, no two SIJD patients are exactly alike so I wish she did more to "tweak" the protocol based on symptoms (this may be partly why her protocol doesn't always work).

I did like that she taught my husband how to check to see if my pelvis is in alignment and taught us exercises, corrections, and taping to do to get the pelvis back into alignment. However, her protocol was fairly simple and is pretty well explained in her book so I think two days (rather than four) would have been plenty of time with the therapist. She also did not know much about pudendal neuralgia or pelvic floor pain, which I am not too surprised about. The treatment was not cheap, however, if it works it is much cheaper than any of my other treatment options. She was also quick to say that if after 6 weeks her protocol does not work then I would have to look into more invasive options like sacroiliac joint fixation/fusion surgery or prolotherapy (which does not have much evidence based practice). This concerned me because I have not had a positive SI joint injection, which is the gold standard of diagnostic prior to surgical intervention. Thankfully I do not take what an medical professional says as fact without thorough research, thought, and most importantly prayer.

My pelvic pain as I've previously discussed is quite complex as the pelvic floor pain makes it hard to do some of the exercises necessary to stabilize the SI joint. The SIJD could be causing my pelvic floor pain or the pudendal neuralgia/possible entrapment could be causing the SIJD. I have had more symptoms consistent with pudendal neuralgia longer than I have had the symptoms of SIJD and even now my SIJD is not typical. One of my major symptoms of "sit bone" pain is not clearly pudendal neuralgia or SIJD (it's most likely a combination or neuralgia of another nerve, possibly the posterior femoral cutaneous).  Even if the SIJD is the overall pain generator it is very possible conservative measures will not stabilize the joint. I do not stay in alignment for more than a few minutes to possibly a couple of hours maximum right now, due to the extreme laxity of my ligaments and spasm of my muscles. The PT said it would take months of me staying in alignment before all my associated muscle dysfunction and pain were gone).  And if the 6 week protocol doesn't work what do we do next? Pudendal nerve decompression surgery, prolotherapy, another SI injection or pudendal nerve injection to try to better confirm diagnosis, proceed with my scheduled MRI in NYC -the best available imaging for pudendal nerve entrapment, reconsider a spinal cord stimulator, or try a very alternative shockwave therapy that is being done in Canada?

We also saw a doctor who did an EMG, nerve conduction study, of my sciatica, lower lumber nerves, and some nerves in my legs to help diagnose the burning in my feet. My readings were actually extremely high and completely normal. This ruled out piriformis syndrome which can often occur with SIJD. Interestingly the amplitude on my left side (which is where my worst pain is) is larger and demonstrates less inhibition of the voltage they use to test the conduction. His only explanation of this is that there is central nervous system sensitization (a hypersensitivity to pain that happens to some people, but is not well understood). Several other doctors have "diagnosed" me with this and he believes this as well as nerve cross-talk is what is causing the burning in my feet. This doctor was one of the nicest and most intelligent doctors I've seen. He spent almost 2 hours with us and complemented my knowledge base encouraging me to not give up my profession of nursing even if I can no longer work. He said I should try to offer support and counsel to people online. I didn't tell him that I am a blogger :) Too bad all doctors can't be more like him.

So, for those of you who have actually read this far :), I will continue to complete the 6 week protocol of stabilizing the SI joint and strengthening/stretching the surrounding muscles as long as it does not flare up my pain too much. As for what we will do next, I have no idea. Pray with us that this will at least reduce my pain significantly enough that I can avoid surgical interventions. While I do not think this treatment will all of a sudden cure my chronic pain, I do hope it is one more piece of this massive puzzle called pelvic pain.

2 comments:

  1. Amen to all you have said here~ esp about the Dr that did you EMG. He is a rare gem in the medical field and I wish they made more like him!

    I continue to pray for answers and clarity - and if those aren't forth coming - peace.
    Much love,
    Amy

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