Chronic SI joint Pain & Associated Problems

[LaCansada]

Greetings to all. I have been suffering with chronic SI joint pain since 2005. I'm not sure what caused it. It's possible that the SI joint was damaged during abdominal surgery as a result of the positioning on the operating table, however, I'll never know for sure. The pain is in both SI joints and radiates down my right leg. My hips are sore and I have been diagnosed with bursitis in both hips due to the sacroiliac problems. I was told that they are frequent traveling companions. I have had 4 RFA's (radio-frequency nerve ablation) at the pain center at Johns Hopkins as I live in Maryland. The initial 3 were helpful and lasted about 12-18 months. The last procedure, inexplicably, left me in more pain. A recent MRI of the sacral plexus showed sacroilitis and some arthritis but nothing terrible. I am scheduled to get an injection in each hip for the bursitis. At this point, I am in pain-management and just struggling to get by. I have completed 3 years of PT and am now doing Pilates to try and strengthen my back. In reality, all these great-sounding, doctor-recommended physical activities have resulted in about...um....let me think...exactly zero degree of improvement in my condition. I just started on the Butrans patch and this has provided about the best pain relief I have gotten of all the pain medications I have tried. I have a referral to see a rheumatologist on Sept 23, to rule out any form of inflammatory arthritis as a possible overlooked cause of this pain. I'm glad that I found this forum and looked forward to giving input to others as well as getting feedback on things I might do to improve my own situation. Best wishes to all!

[Justin]

Hi LaCansada,

Welcome to the Spine Patient Society.

Interestingly, your bilateral SI issues sound like something more than positioning during surgery. I say this because of the bilateral nature of your SI pain. Have you been worked up for inflammatory arthritis? Oh wait, I just saw that you are headed to see a rheumatologist on 9/23. I believe that appointment will help provide you with some answers to your long-standing SI pain.

I wish you the very best and please pop in and let us know how your appointment goes!

[laid up doc]

SI joint pain is very often a wastebasket diagnosis - one that i was given that delayed the discovery of my injured disc for years, but I digress.

Sacroilitis on MRI is a real finding, and I agree w/ Justin - very unlikely to be related to any surgical positioning. imho, you are taking the right next step in seeing a rheumatologist. best of luck to you.

[LaCansada]

Thanks to both of you for your input. I am headed to a rheumatology referral in two weeks. There was no indication of an inflammatory form of arthritis on the MRI of rhe sacral plexus, however, I have not had any bloodwork done and it is bothering me (ok, I'm obsessing over it) that they did not do the MRI w/contrast to really be able to check carefully for any early signs of a problem such as ankylosing spondylitis or psoriatic arthritis. I actually started with a referral to a rheumatologist at West Virginia University (WVU) medical center and the physician here, order a basic X-ray of the SI joints, which showed problems and then the MRI. However, she was sent the MRI report and not the images and she indicated to me that she needs these to give an opinion. My feeling about this whole experience, is that she is a very lackluster rheumatologist. No bloodwork was done at all and that seems weird. Then the radiologist who was present at my local hospital when I had the MRI, tried to contact her office b/c he needed it to be ordered w/contrast to rule out a septic joint (based on the x-ray results). He could not reach her to authorize this, so they did the MRI anyway. However, when it comes to my health and a pain problem wrecking my life, I take a scorched earth approach to things and feel they must be done correctly. So I am changing docotors and starting over w/the rheumatology referral and going to a place in DC. I am not invested in having an inflammatory form of arthritis, however, I am invested in them ruling it out. I live in the mountains of western Maryland, so to get to any kind of a major medical center I have to travel either east to Baltimore/DC or west to WVU. Not much here in my community. Thanks again.

[laid up doc]

sounds like you are taking the right approach... and in the future make sure you take your images to ANY specialist you see - radiologist never have the advantage of seeing the patient and though they have a history you wrote, they are always at a disadvantage by not having you, the patient, in front of them.

who are you seeing? you definitely need to see someone else....... unfortunately, geography can really work against one at times. i used to practice in NW DC and NoVa.

[LaCansada]

Thanks Laid-up doc. Ironically, I have a plethora of doctors due to my remote location. I go to the Blaustein Pain Treatment Center at Johns Hopkins where I see Dr. Raja. I just brought a disc w/my MRI images to him at my appt last week and he said that it showed sacroilitis in my right joint. They did my SI joint RFA's here (the last was on June 10, 2011) and will being doing an injection in each hip for bursitis in 3 weeks. However, they don't prescribe narcotics and require you to have a local PM specialist, so add one of these to my list. The last RFA may have made me worse, not better once the cortisone wore off. I don't know why this would be given that it was my 3rd RFA to the right SI joint and I did not have problems like this in the past. Dr. Raja said the joint was not septic. My local PM physician just placed me on the Butrans patch about 10 days ago, which I have been really happy with so far and he requested that I see a rheumatologist. So I have an appt w/Dr. DiIorio at Arthritis and Rheumatology Associates in Rockville, MD, on Sept 23. I will bring her the disc w/my MRI images and she can then decide if she wants this MRI done w/contrast or if any bloodwork or other testing needs to be done. So that is the rest of my story.