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Sacroiliac surgery / fusion...

Lala329LLala329 Posts: 283
edited 06/11/2012 - 8:32 AM in Lower Back Pain
I am currently considering sacroiliac fusion surgery and was wondering if anyone had any experience with this...

To give you some background, I suffered a major trauma and fractured multiple vertebrae and my sacrum several years ago. While the fractures are healed, I continue to have severe pain in the area of my SI joint and lower lumbar spine. I have one hypermobile SI joint and the other gets stuck and shows signs of articular wear on X-ray. I've tried pretty much every type of conservative treatment there is- PT, chiropractics, injections. I get very temporary relief with mobilization of the joint, but it never lasts for more than a day. I am starting to think that I might have severely stretched or ruptured some of the sacroiliac ligaments due to the trauma because it feels like no matter how much strengthening I do I can't seem to "hold" the SI joint in alignment.

I am working with a pain management doctor and at this point he doesn't know what to do for me since I have not been able to get any lasting pain relief with conservative measures. I am only in my mid-twenties so the idea of sacroiliac surgery is scary because I know it is absolutely considered a "last resort." I haven't met with a surgeon to discuss my options, but since I've hit a dead end with my pain management doctor I'm feeling desperate to try to figure out what my options are to get this under control because it has been going on for so long. I feel a little frustrated because my issues are the result of a major trauma, and I feel like a lot of the doctors that have seen me are unsure of what to do since they are more accustomed to treating wear-and-tear type issues rather than a major injury.

Has anyone had any type of sacroiliac surgery, or considered it?? I'd appreciate any information anyone can share. Thanks!
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Comments

  • lala,

    "I feel a little frustrated because my issues are the result of a major trauma, and I feel like a lot of the doctors that have seen me are unsure of what to do since they are more accustomed to treating wear-and-tear type issues rather than a major injury."

    wow, i read this and i feel like i'm reading my own writing. back in october this guy ran a red light and t-boned my car at 50 mph, causing ten breaks throughout my pelvis including my sacrum, and dislocated and shattered my elbow requiring fixation with two plates and nine screws. the doctors said all the pelvic fractures were stable and wouldn't require surgery. but here i am, nine months later and still going to the pain clinic just to feel "normal". i'm doing physical therapy twice a week and just started walking again a few months ago. i am glad to say i no longer use a walking cane, either. but today i had an appointment with my ortho doc, who took new xrays and showed me that my saccral fracture healed back unevenly. the difference was so much it looked like two incorrect puzzle pieces mashed together.

    he explained that this is severely affecting my SI joint, and that is where all of the untollerable hip pain i'm having is probably coming from. i can't sit more than an hour without needing to stand up and pop my hip like an old lady, keep in mind i'm only 24. i haven't had more than 3 consecutive hours of sleep a night because i have to get up and pop my hip. after nine months of this i think i'm losing my grip on reality! do you have these same problems? he told me about the surgery, but that at first he'd like to try steroid injections. the issue with that is number one, i know they don't last forever, and number 2, my health insurance is running out in march 2010. so i feel stuck... do i try the injections and hope they work or do i go ahead and have the surgery so i can have the recommended amount of recovery time ( 6 months ) before my military insurance is gone? do you ever ask yourself, what if it's not my SI joint? what if this surgery ends up being un-necessary and just causes more loss of work and more painful recovery time? more physical therapy even?

    i've been looking up information all day trying to weight the options. i really hope you share what you plan to do, and if you're hurting even 1/10th of what i am, my heart really does go out to you. no one understands how annoying and irritating and depressing pain is until its as constant and as enduring as what we're dealing with. i mean, of course it could be worse, but it still sucks.

    good luck. hopefully someone will post some helpful information. i wish i could be giving you insight instead of whining about my own problems ;)

    oh what medications did they have you on at the pain clinic if you don't mind me asking? even if you're hitting a 'dead end' with them, i'm sure there is something out there they haven't tried.

    http://www.spineandsacroiliac.com/sacroiliacsurger.html
    http://www.spineandsacroiliac.com/faqs.html

    this is where i found the most comprehensive surgery info so far, it explains three different surgery techniques and recovery times.
  • Hi Heatherette,

    We sound very similar in terms of symptoms. It's good to know I'm not the only one in this boat, but also terrible to know that you are also going through the same thing.

    It's been a few weeks since I made this post. Since then I have consulted with a surgeon about the fusion surgery. The consult was extremely helpful and answered a lot of the questions and concerns I had. My impression is that the surgery is never a great option because it's a major surgery, but when conservative measures fail and the pain is unbearable there really is no other choice.

    As far as the injections, they are considered diagnostic for SI joint problems so I think you'll probably have to move forward with those first before a surgeon would consider operating on you. I think your insurance might require it, and the surgeon would want to know that numbing up the joint provides you with pain relief. But, if your X-ray shows a visible misalignment that may be a special case where the diagnosis is definitive and it would be clear cortisone wouldn't help.

    I'm like you, also, in that I always have this nagging fear that "what if it isn't my SI joint," but I know deep down that it has to be because I have had such extensive diagnostic work-ups and with the sacral fracture history it makes sense that the SI joint would be messed up. I've also had multiple doctors diagnose it, so the main problem is just figuring out what to do about it since conservative treatments have not worked.

    I would encourage you to consult with a surgeon that does this type of surgery. For me, it gave me the information I needed to help me make an informed decision. I would think that the orthopedist who noted that your sacrum has healed back misaligned might be able to offer you a good opinion on your options?
  • Hey guys,

    I'm a 23 year old female who struggled for over a year and a half with sever back pain caused by weightlifting and athletics. I underwent a dozen injections, radiofrequency nerve burnings, etc before I finally broke down and got my SI fused.

    I was terrified and scanned the web for hours a day looking for people who'd had the experience I was having and willing to share their story. I couldn't find anyone who'd actually had a fusion. I am joining a few sites I visited pre-surgery to hopefully share my experience with anyone out there searching for info.

    If anyone is considering the option and wants to get a take on what it's really like, I'm here! It was a tough decision, I spent 5 days in the hospital recovering, will be non-weightbearing on my fused side for 6-8 weeks, etc. Any questions- feel free to ask!

    Jen
  • It's unfortunately very common for doctors not to recommend something because they don't know about it, Lala. I couldn't believe how widespread non-information by treating professionals was when I had 8-weeks investigating my upcoming 4-level lumbar fusion while my fractured pelvis healed back on July of 2010. As I've said before, I'm just very lucky to have a very knowledgeable team on my side which is why I'm still here after the successful surgery. And "bully for you" Jennifer for offering your help as well. Now I'm showing my age! Anyway, you might want to ask your doctor about SCS or spinal cord stimulators. That was going to be my next move had fate not intervened making surgery a must-have after a horse accident.
  • Yeah,

    Anything, any time. Info is at a premium. I heard of spinal cord stimulators, but after a couple years dealing with pain walking, standing, sitting, etc I gave in to surgery. So far so good. Took me 5 days to leave the hospital, but since getting home 12 days ago I've only taken pain killers 1 day.

    Got my fancy walker and am hobbling about quite easily. Only thing that gets me hung up is remembering that I need to constantly be aware of my body position and posture while I heal. It's not bad at all. No pain, no soreness even.
  • I live in Southern Florida and am having trouble finding a Florida surgeon who does SI joint fusions. Apparently SI joint hypermobility is a rare condition or it rarely gets to the 'last resort' stage - I've done every conservative procedure possible in the last 2 years to solve the problem. Jennifer, can you give me the name of your surgeon, as well as let me know if you are still happy with your surgery results? Or if there is anyone else out there who can give me a name of a great FL SI joint fusion surgeon? Has anyone had the I-Fuse implant surgery method done instead of the screws/grafting procedure?
    Would also love to hear what your SI joint dysfunction symptons were. It would be helpful. Thanks.

    Susie-Q
  • Hey Susie,

    I know what you mean when you say it's tough to find a surgeon. If I'm not mistaken only 10 doctors that do the SI fusions- the only one in Florida being in Jacksonville. I would've never even realized there was such a thing if my doctor in Pensacola hadn't suggest I get my SI checked. The referral I got was for the surgeon in Jacksonville named Dr. Arnold Graham Smith. He's a nice british gentleman who was quaint and honest from the onset.

    I initially traveled to see him just for diagnosis and info on my options, and was so extremely happy to finally have met a surgeon who wasn't just looking to wield the knife on me asap to make a buck. He was only a couple minutes late seeing me, but after the visit we had I understood why... He spent over an hour with me throughly discussing my pain history, procedures/injections I'd had done, giving a physical evaluation and explaining what the two procedures entail. I left that office feeling like I understood my condition and what I could and WOULD end up having once school let out and I'd have time to recover.

    After I left he sent me personalized followup letters and kept tabs on how my condition was progressing/regressing. He seemed legitimately interested in helping improve my quality of life. On a couple of occasions (while gathering info and deciding if I had the mettle to eventually do the surgery) I called up his office and within minutes the nurse had me talking to him during business hours or even his break! He answered every question and never once pressured me to get surgery. I knew he'd be the guy I'd put in charge of my health!

    I decided on the fusion dubbed the "Jacksonville Open Procedure" rather than the iFuse implants. It was developed and mastered first by Dr. Graham Smith (in Jacksonville) and was the one which is more time tested- with the implant being so new. Though the recovery time is longer, I was sold on it because of Dr. Gram Smith's stories of good and bad experiences with both. Even after completely healing the implants can cause problems in the rare events of car accidents of other serious trauma because they're titanium and so much more rugged than bone. On the flipside, once bone fuses to bone it can't be broken or dislodged... It'll last 40-50-60-however many years. If I were older and not as quick to heal I probably would've gotten the implants to speed my recovery and just held out hope that I'd never get rear-ended in an automobile accident. But at 23, I hope to have another good 40+ years of driving and didn't want to take the chances.

    Here's his office info:
    1-904-391-6862
    Extension '0' is the recentionist


    You can also google him to get other patients' opinions!
    http://www.google.com/search?client=safari&rls=en&q=sacroiliac+joint+dr+graham+smith&ie=UTF-8&oe=UTF-8
  • Oh I forgot to mention my recovery! Sorry!

    I had the procedure May 12th, spent 4 days in the hospital up there, then was released home. They made me very comfortable while there- the staff was so friendly, the recovery rooms are all private with a pullout couch so Mom could spend the time with me,etc.

    This is officially week 8 and I have had minimal pain. The ride home from Jacksonville and the day after were really my only painful stint. You'll be on a walker (no weight on the repaired side for 2 months) and you can't drive either, but if you have friends and family willing to look after you for the time it'll fly.

    At week 6, with no pain Dr. Graham Smith gave me permission to begin walking in the pool to start to get my legs back under me. It's going well! My followup is August 10th I believe and at that time he'll get a scan of the fused site and let me know if I'm healed up and ready to begin walking.

    That's another plus- it requires only rest, no racking up thousands of dollars in rehab costs :)
  • Hi Jennifer,
    Thank you for all your information. Still have a few questions. How do you think you acquired your SI joint dysfunction - accident, etc.? Was it diagnosed as a hypermobile SI joint? Did you have painful bone cracking as one of your symptons? My pain comes on after I've been busy doing things and the muscles tire, then the cracking starts and muscle spasms begin. Does that sound like your symptons?
    Today I had an arthogram SI joint injection today to make sure my pain is coming from the SI joint, not the facet joints. Getting relief from the injection, so my problem is probably the SI joints. I had scoliosis spinal fusion surgery (T5-T12) in 1972 when I was 26, so that is probably why I am finally having all these lower back problems. Had 2 stenosis surgeries in the last 2 years at 2 different levels, which rid me of leg and foot pain. Now I just need to get rid of this waistline cracking and pain in the lower back, hip and butt.
    By the way, Dr.Arnold Graham-Smith in Jacksonville, FL. sounds like a very knowledgeable doctor with a lot of SI joint surgeries under his belt. I will definitely pursue him if a SI joint fusion is on my horizon (which I think it will be). Wish he was closer, but having a successful surgery is more important than distance.
    Thanks again. If you have a chance, please answer my questions. So glad you are doing so well after your surgery. May you continue to progress successfully with no pain.
    Susie-Q
  • You're welcome Susie! Knowledge is power- the more the better!

    I believe I initially hurt it weightlifting (with my college softball team) because I felt a pop like nothing I'd never felt before. I continued with the workout though because after the initial pop there was no pain, just a little tension. The following day when I tried to get out of bed I couldn't even more. It wasn't until then I realized something was wrong. I found that with therapy and rest it would come and go so I just loaded up on pain killers to make it through the season. I'm certain sliding on it and creating the torque associate with hitting didn't serve it well, but I was pretty committed to playing.

    After any activity at all is when my symptoms were worst, and yes your cracking and spasms sound identical to mine. On the hurt side I could rotate only a couple inches before I'd get spasms, but on the well side I could rotate the top of my body 90 degrees and have no pain but hear a lot of crunching and loud pops.

    I was told by the first doctor I saw that the SI is not generally considered to be a pain generator by back orthopedists. He put me under for facet injections (at every facet level) and no lie- the moment I got home all of my pain was back. It gave me no relief. I believe I had about 6 "trigger point" injections into the areas around my SI throughout the season, which was almost weekly. They gave relief but it was only for a day or two. As my symptoms continued for month upon month I talked him into trying something else and giving up on the facets. He had me do the medial branch block (diagnostic) and then a unilateral radiofrequency procedure in which we burnt off 4 nerve endings. I was in brutal pain for about a month waiting for those nerves to die and break off, then got about a month of total relief when all of my pain way gone. The symptoms were still there as I cracked with every move I made, but with no nerve endings my brain couldn't receive the pain signals.

    When I finally got Dr. Graham Smith's info and found time to see him he went ahead with the SI block you're getting and I got instant relief. It hurt like heck when they put the needle in (so bad I was tearing up on the table) but I was so relieved because that was the first time I'd found someone who could reach the exact point of my pain. That was it, I knew he was my guy and as soon as school ended and I got all my stuff home I got right back in the car and drove across the state the have it done.

    He's great, you'll love him. He's very knowledgeable and a straight shooter so if he thinks you're a candidate for success he'll set you up. Some of the things I do know though is that soda and cigarettes interfere with bone growth and post-op recovery so he won't do the procedure until you kick those at least until you recover. I'm struggling with the Pepsi withdrawls but I know it'll be worth it :)

    Anymore questions, let me know! I couldn't find anyone who'd had the fusion before I did so I'm more than happy to share the info.

    Jennifer








  • What you had done before surgery, as well as your symptons are so similar to my story. Can't tell you how many times I've been in physical therapy to strengthen my core (4-5 times), but it never rid me of the pain. I also had facet nerve block shots at all 6 levels of the lumbar spine with no relief of pain. The pain management doctor also wanted me to have the nerves burnt but I couldn't justify it if the nerve blocks didn't work on the facet joints, so I left his services. Have been to so many doctors, I've lost track. The pain management doctor I am seeing now is pretty good - first time there, he truly listened to my symptons description, looked at my x-rays and MRI (7th one out of 8 I've had in 2.5 years), and thought my problem was a hypermobile SI joint on the right side. It was a diagnosis that made sense to me. When I wake up in the morning, I am without pain. As the day goes on and depending what I do, the cracking starts and muscle spasms begin. Any bending, lifting, or twisting hurts once the back muscles tire and cannot hold the SI joint in place. Tennis, the sport I love, doesn't help my problem, but I refuse to give up the game. However, I can get out of the pain by lying down. If I want to live a non-sedentary life, I need to find a solution to this problem. You have given me hope - proven in my mind that my problem is a hypermobile SI joint and given me the name of an excellent surgeon to go to. Hope to get an appointment with him the first of Sept. when I am on my way home from NC.
    Thanks again for your information - it really helps.
    What college do you play softball for?
    Susie-Q
  • Susie,

    In reading your story I agree, it's so much like mine. I too would wake up pain free and jump headfirst into activity, but by midday I was struggling to walk taking baby steps. It was awful. I saw 3 different physical therapists and was given core programs as well, but if anything it made it worst. The only thing that gave me relief was not moving- and I had to literally wiggle around in bed and cram pillows everywhere to find that one comfortable spot.

    I wish there was a way to recover without surgery but I finally gave up. I bought a couple expensive SI belts which were supposed to keep my hypermobile SI stable throughout the day, but all they did was make me walk with a waddle and squeeze my core so tight it was uncomfortable. If you have a facebook account you should check out this page someone turned me onto the other day. It's a group page called SACRO-ILIAC JOINT SYNDROME / SI JOINT DYSFUNCTION - SIJD.
    http://www.facebook.com/groups/69991252216?notif_t=group_activity

    I joined yesterday and am trying to find more people who've gotten surgery and successfully rehabbed. Before you get surgery you should check it out. I'm having a great recovery thus far but haven't yet recovered fully so it would be good to get more than one experience :)

    Jennifer
  • Hi Jennifer,
    Thanks for the info on that SIJD Facebook account - I was on it for several hours getting information on it. By the way, the arthogram I had last week proved that the hypermobile SI joints are my pain generators and bilateral SI joint fusion should be my next step (since I have done everything else to immobilize them). However, the doctor told me that most orthopedic doctors do not or do not like to perform this surgery and suggested I investigate for doctors that have done quite a few of these surgeries. So I have made an appointment with your surgeon on Sept. 2nd (when I am on my way back from NC) - getting all my info and tests together to present to him. Do you think I can have everything done at that appointment to set up a surgery date? I live 5-6 hours away from Jacksonville, so he is not just around the corner for me. I cannot find any other SI joint doctors nearer to me in South Florida to go to. And I'll go anywhere to have the best - having a pain-free life is at stake.
    Hope your rehab is going well, getting stronger each day. O:)
  • Hey Susie,

    Sorry to hear that the SI is the generator, but at the same time I'm glad you finally have confirmation. I knew listening to your story you would get it confirmed.

    Day 1 - I got a fresh CT and an SI block (which you should call and ask the office to schedule if they haven't already!) He will make you get a block done with the hospital there because he trusts that they'll do it how he wants and won't operate until he's 100% sure it's been blocked properly.

    Day 2 - After I had a successful block we thoroughly went over my history (more than an hour 1 on 1). He described my surgery options and suggested which one he thought was best for me.

    We handled all of that the first visit and everything for pre-op was in line for whenever I got the time to return for surgery. It'll be no issue, he's through and patient. I also live 5 hours away and had to make the commute. I spent the night in Jacksonville to get new tests (since mine were a year or so old and didn't show any damage). If you bring your images he won't make you get new tests so that'll save time and you can get everything done in 1 day.

    For the block and consultation you'll need about 3-4 hours so you may end up wanting to spend the night. But I would definitely suggest that you call up his receptionist Jennifer and make sure you're in for only a day. He may want to see you, send you for a block then have you walk back over afterwards to see how it went. His office is adjacent to the hospital where the SI block was given to me so it's convenient to get between the two on foot. But yeah, definitely ask Jennifer if he wants you to get a block that day so she can schedule that for the day your there!

    Thanks for the well wishes! I'm doing good rehabbing thank goodness!
    Hope your visit goes well Susie!

    Jennifer
  • Hi Jennifer,

    Thanks again for your helpful information - you saved us an extra trip to Jacksonville. Talked to Ashley, the office manager, yesterday and she is setting me up for a SI Block the same day I have the appointment. She told me that Dr. Smith has done over 100 SI joint fusions, with 40 of them being i-Fuse. I'm impressed. Listening to you, I have to assume the success rate must be up there too. I am sending ahead of time to Dr. Smith my test/doctor visitation reports, lower back pain medical history resume, and all the information forms they asked me to filled out. Ashley told me to bring in person all the test CDs - afraid of them getting lost in the mail.
    When I am almost pain free the beginning of the day,I wonder why do this surgery, but later on in the day when the scrutiating pain sets in, I know why I am pursuing surgery - to once and for all hopefully get my life back. The pain is definitely getting worse.
    I thank God for crossing our paths. May I also be able to help someone else in this situation down the line like you have done for me.

    Keep up the good rehabbing! Doing physicl therapy? Keep me posted on your progress.

    Susie-Q
  • Glad I could give you the heads up to save you a trip and that extra cost!

    One last final tip: if your SI block is in the morning try to get up and about early that morning to agitate the SI. The first one I had I literally woke up and walked over practically pain free (and left doubting I needed surgery because I wasn't in normal pain beforehand). The second one I woke up and went up some stairs and for a light jog to put myself in pain. It may sound crazy but when I got that injection and got relief I was more confident scheduling surgery because I knew it was necessary.

    Don't forget your cd's! And I'm glad I was able to help. As soon as I got home from my hospital stay I promised myself I'd get online and look to share my story with anyone in need because there just aren't enough of us out here helping one another. I hope your visit goes well- keep me posted :)

    I got the contact info of a rehab guy in Lakeland about 2 hours from me in St. Pete. I am doing my Dr. ordered pool exercises and plan to drive across i-4 to see this guy soon :) Maybe he'll have some more info I can pass along for your post-op!
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