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My case has changed my doctor

heatherj78hheatherj78 Posts: 16
edited 06/11/2012 - 9:00 AM in Sacroiliac (SI) Joint Problems
I have been struggling with SI joint pain for over a year, have tried any and everything even had a 2 level lumbar fusion. The doctors kept saying that it was just referred pain from my bad disc. 2 months after having surgery I realized that the pain was WORSE than before surgery, so I applied for disability. I have been in the doctors office CONSTANTLY for this pain. 3 weeks ago I called my ortho in desperation bc the pain sometimes makes me very depressed...it's constant nonstop agony everyday, who wouldn't be depressed. Anyway, my ortho did lots more testing and said that it sounded like my SI Joint but I didn't get any relief from last years injection. He asked if he could do it again. I said fine. After he did it I could feel immediate difference in the pain..it was decreased by 35-40% or so. But any relief was better than none! :) He said that if it didn't help then I'd have to have surgery. He said to me also that I had been right this whole time and it was my si joint. He briefly mentioned si joint fusion which kinda made me panic since I just had back surgery. He said that the numbing would wear off and the steroid would kick in and help...he hoped. But if not to come back in 3 weeks. Of course, within 6-7 hours after the numbing stuff wore off I was miserable again..but greatful for the tiny bit of pain relief I had. The steroid never helped. I asked him about my xrays they took and asked him about the big ole gap in my left si joint to which he stated was more than likely the way I was positioned. I told him that that big gap shows in all my xrays and i always get the same answer, that its my positioning. I left with a numb butt and got 2 sets of xrays from last year that were 8 months apart and one was standing and one was laying down...and still the same gap. I took them to a former boss who is a chiro and he did some testing them looked at the xrays and said that it was my ligament that was stretched out and pretty wide and nothing can fix it but surgery. I went back to the ortho today and before we could discuss anything he informed me that I have had him thinking about things since my last apt. That I have made him change his approach to people and now is doing si joint injections to check for si joint issues more that he ever has in his life. To me it means that he is actually listening to the patients now and addressing the issue they are complaining about instead of just what the doctors think it is. People know their bodies. I like my ortho and am very glad that he is approaching his patients differently now. I had another injection today and it was more painful than the last time because he did it in a different spot. He appologized bc I was crying and said it was taking so much time bc the gap was so big in the joint. he wouldn't do the right one even though i expressed that it was painful..he said 1 at a time. He said that hopefully this worked and i wouldn't have to see him again. I know in my heart (and in my si joint) that its not oding anything bc 6 hours later im hurting very badly again. i have to go back in 3 more weeks to try another shot...and if not successful then discuss surgical options. i know i can't have surgery right now bc finances and other issues..but i am glad that he now has a new approach to things and maybe because my suffering someone else might get answers and not have to have unnecessary surgeries.


  • Hi Heatherj78 :H

    That's great to hear! I had a wonderful neurosurgeon before I moved in 2009. He, too, listen to me, as did his PA and other staff girls. I am soooo glad that you made such an impact on your physician that others will benefit as well. Too bad there is not a class for "Listening To Your Patients" taught in med school. Good for you. Maybe there's hope for the rest of us out here dealing with chronic and seemingly never-ending pain. Please keep us posted on your progress. Maybe we'll all get some ideas how to better communicate with our docs and their staff. I'll just keep my fingers crossed that your pain eases for you. Just keep fighting. I have been coping with my situation for about 6 years now. Some days are harder than others. Know that you have friends here that will listen and keep you in their prayers. Here is a big >:D< for happy thoughts. Hang in there.

    Rassy's Story
    Under House Arrest Without the Ankle Bracelet :-)
    The remarks I make are strictly my own based on my personal experiences.
  • i hope that others can benefit from what im going through. i have no relief in sight short of a si joint fusion but thats not a guarantee. i wouldn't wish this on anyone. i really feel for anyone who is going through this like we are. so many people dont have doctors that listen or even care. so sad. and thanks!! big hugs to you!!! :D i dont understand why im going through this..but i know god is in control and make it for good somehow.
  • Your comments echo those of so many of us out here. No, I would not wish this on anyone, either. It's so hard to put into words that it hurts to blink or it hurts to talk or it hurts even to THINK! I, too, believe it is in God's hands. Everything happens for a reason, but I keep asking myself WHY THIS??? I don't understand either, but I just keep the faith and am so thankful for this website. I think these docs get so wrap up in their overbooked schedules that they don't take the time you need with them. That's when I step up and start talking. I don't care how long it takes, to a point. I am paying my dime too. Keep hanging in there and scream out here if you need to. Someone always here to listen :) .

    Rassy's Story
    Under House Arrest Without the Ankle Bracelet :-)
    The remarks I make are strictly my own based on my personal experiences.
  • All the MD's don't wanna bother with medications they just send you to a pain management doctor ..And they have so many patients its like your a number..So sad..When is the medical profession going to address this problem???
  • These injections often do cause a bit more pain than what we are used to, and can last for a week or even two before getting any relief. If no relief after a week or so, the injection may have been in the wrong spot, or simply didn't work at all.

    Have you tried PT or any other types of treatment/s such as a TENs unit?
  • I haven't had any relief from the injections. This pain started May 2010 and got worse. In January 2011 it got so bad I had to seek treatment. I worked for a chiro so I tried all the conservative treatments like decomp, tens, ajustments, ets. The PT gave up because he saw he couldn't keep it stabalized and something was very wrong. I had 2 level lumbar fusion in August. I finally got another ortho to look at some xrays and showed him something is wrong. I showed him low back xray of me standing and laying down that were months apart...and you can see the obvious widening of the left si joint. The ligament is stretched out. Nothing can fix that but surgery. The right side hurts very bad also. Not sure if it is because I've put so much on it for almost 2 years or what. It pops everyday. The left side doesnt. Both hurt and I'm tired of walking like a cripple..I hate that people stare. I see a surgeon in April. :)
  • roziarrozia Posts: 6
    edited 03/15/2013 - 7:30 AM
    heather sent you a message on md juc.
  • sparky99sparky99 Posts: 5
    edited 03/15/2013 - 5:34 PM
    This country needs universal health care!!! Everything needs reform from XXXXXXX XXXXXXXXXXX. I have been fighting denial letters every step of the way and all I want is to be off meds and back to work.

    Post edited to remove inappropriate wording. Please read the Forum Rules before posting
  • I said absolutely nothing wrong or inappropriate. I will delete my account if I am not aloud to speak freely!!! I used no profanities nor did I offend anyone. I recommend anyone on here to watch Michael Moore's documentary Sicko. That movie will explain my previous deleted comment. Why are people so afraid of hearing the truth about this corrupt system?
  • dilaurodilauro ConnecticutPosts: 9,856
    We edited your post because you did in fact violate forum rules. It is clear that you never read the rules.

    If you wish to delete your account, go ahead, that is your choice.

    But always remember, this is a private web site and as such the owners always have the right to edit what is deemed

    If you want only to talk about the corrupt system, then I would recommend that you find another site to do this at.

    This is not why Spine-Health is here.
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
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