just found out I have to have SI fusion.. :(

just found out I have to have SI fusion.. :(

Welcome to Spine-health's Sacroiliac Joint patient community, sponsored by SI-BONE. SI-BONE representatives and health care professionals will join the discussion each week, sharing their answers and insights on Sacroiliac (SI) joint topics: when lower back complaints might be caused by the SI joint, how SI joint problems are diagnosed, treatment options for the SI joint, preventive advice, and more. Learn more in: Could My Low Back Pain Be Caused By Sacroiliac Joint Dysfunction? Education Center on Spine-health sponsored by SI-BONE. SI-BONE is the maker of the iFuse Implant System® for minimally invasive surgical (MIS) sacroiliac joint surgery.

Discuss: when lower back complaints might be caused by the SI joint, how SI joint problems are diagnosed, treatment options for the SI joint, preventive advice, and more with the Spine-health patient community plus our physician faculty and guests from SI-BONE.

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heatherj78
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Joined: 01/30/2012 - 4:30pm
just found out I have to have SI fusion.. :(

After a long year in 2011 of pain injections, therapy, chiropractic, decompression, epidural, pain meds then finally 2 level lumbar fusion...I am still in terrible pain! It's been over a year and I felt as though no one has listened to me. I had surgery laster year bc I was told with the degenerating disc that were bad I should be much better after surgery. I have been in hell!!! It's worse now. Instead of SI Joint pain, after surgery I now have horrible back pain and spasms. To get the the point - 2 months after my surgery I realized I was worse so I applied for disability bc I couldn't work and no more money. I am in 24/7 severe pain. I want to get well and am desperate! Today I got bummed out and was at wits end and decided to call my ortho AGAIN just to see what could be done. I can't get into the neurosurgeon until 2 weeks. After 3 hours today and going through thousands of questions and motion test, he asked if I would let him do another pain injection in my SI, even though last year it didn't give relief. He did and it gave me almost 50% relief! It still hurt like crazy but I could tell some inprovement. I could have cried. Then he looked at me and said I was right the whole time. It was always my SI joint. He mentioned that I'd have to have a fusion but he didn't know anyone who did them and he had only done 1. So...who knows when I'll be able to have surgery bc they have to find a good surgeon and the big part is I have to have the money. That is the big reason I applied to SSD. I want to get well...but I can't afford it and I sure as heck can't work. So I'm curious. To the people who have had this surgery, how has it helped with the pain. Has it improved your life? Oh and HELLO!!! Grin

durrrr
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Joined: 07/18/2011 - 2:03pm
We must be twins:))

I was gonna get on here a post that I was nervous as he!! because next Wed. 2-08-12 I am finally having my left SI Joint fused. My ordeal has so many similarities to your's. I had severe pain in my low back for close to 3 years and then I had a MVA and it went to hell then. After the car wreck my low back, hip, buttocks pain was excruciating. I had a MRI ran and that showed severe DDD, herniation, annular tear at my l5-s1 level. To be sure this was causing my pain he performed a discogram and I went off the table when he injected my l5-s1. He said well we found your problem. Prior to this I had went through all the PM injections for discs, facet injections and RFA. Nothing helped so I was glad to hear that he hit a homerun and I could finally expect some relief. I had a TLIF fusion and followed all the Dr orders. Started PT after 8 weeks and the pain seemed to be getting worse. After each follow up with the surgeon I would explain how my pain had increased in my SI joint area and I could barely walk with out a cane at my 3 month follow up. He said just give the fusion time and it will get better. Finally after my 8 month follow up I was referred back to PM for evaluation. The PM doc did some manipulation and determined I had SI joint issues and seemed to think the inital fusion may could have been done prematurely. This fused segment was adding stress to my SI Joint which obviously was most of my problem all along. PM doc said more and more surgeons need to address the SI Joint as well as all other spine issues to make sure it can be ruled out as a pain source. If detected soon enough the ligaments in the joint can be made stronger which will avoid the dysfunction that leads to severe pain and the need for a fusion. Over the next months the PM did all the diagnostic injections and I had immediate relief and then it returned. Steroid injections helped only a week and then returned. My last attempt to fix the pain was a RFA of the lateral branch nerves in the SI Joint. This only gave me minimal relief. I was told that with dysfunction none of these will alleviate the pain enough to improve the quality of life enough. The only thing left was a fusion of my SI joint unilateral on the Left side. I researched the new SI Joint fusion by SI BONE. I contacted SUE O Dell and she put me in touch with surgeons in my area that were trained in the procedure. I am lucky enough to live in Charlotte NC and we have a lot of surgeons who do these. I chose the one from the practice that done my TLIF, but not the same DR. I have spoken to people he has done surgery on and gotten mixed opinions. Most of them say they would do it again if they had to. The main issues are the need to be non weight bearing for up to 12 weeks. Then PT can be rather demanding and most have said they notice relief immediately with the usual pain and overtime the pain subsides. In all most say within 6 months the pain has decreased by 50-60%. By 1 year most say 80% pain reduction and a solid fusion has taken place. As with any surgery u will never achieve total pain reduction. The most common pain issue is the piriformis spasms and sciatica it can cause. I feel very comfortable in going forward with what I have read and the people I have spoken with. I feel I can't go wrong. I myself had to apply for SSDI. I applied in 2008 after my MVA. Mainly it was from the epilepsy the head trauma had caused, along with the unbearable pain I had developed. I was denied like most are. I had my attorney appeal and it went to reconsideration and was denied once again. It was then sent to a ALJ and since my original file date it was 1-2012 before I seen him. I have been approved finally and just awaiting all my final paperwork. I can tell u that the main key of winning is to beat the Dr's door down trying to find a solution to what is wrong. I have followed every suggestion the Dr's advise me of. The key to me winning was that my inital fusion was considered a FAILED BACK surgery according to the SSA. I now require an additional fusion on a major weight bearing joint which is key in them rating your RFC. Or the ability to sit, stand or walk in a normal work day. In my case I can sit very little, standing is excruciating I need to lay down to get some relief, and the fact that I take 29 pills a day for all my medical problems and that results in memory issues as well as risk of hurting myself in most jobs. U get the point I'm sure . Just do all u can to build your case and DO not give up. That's what they want. They will owe me and my kids 39 months of back pay which is in excess of 2100.00 per month. I also get that amount each month until they do a review which will be in 3 years in my case. Sorry for the book I typed I just feel so much like u do and know what u are facing. keep your chin up and I hope u find relief and get approved for SSDI.

DURRR

heatherj78
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Last seen: 1 year 10 months ago
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Joined: 01/30/2012 - 4:30pm
thanks durrr!

I enjoyed the book! Thanks. I had the pain injection Monday and it gave me a bit of relief, but it was enough to make the Ortho realize that it was my left SI joint, like I had been saying, the entire time. The injection only gave me slight relief that day. I am back in he!!. I could almost swear that something was broken back there. I know the feeling of not being able to sit, stand or walk without horrid pain. When I walk I feel like my bottom half is loose and about to fall off...like its just barely hanging on. And now because I've suffered with the left hip for so long....the right one has been hurting as well. I didn't realize how frickin bad the low back and right si hurt until the injection numbed the left one up. I am so dissapointed bc even though they said i had degenerative disc and the l4/l5 and l5/s1 disc were bad, i am now in more pain and new pain then before the surgery. my ortho said he has only done 1 si joint fusion in his long life and will have to look into who he would recommend...which means id have to travel a good distance and maybe out of state. i only applied for disabilty when i realized i was not better, but worse...which was 2 months after surgery. i didnt rush into it bc i didnt want to be on it. i kept hoping that i was gonna be fixed and be able to work again. Far from it. Here it is, a year later and I'm back to square 1. On top of that they have discovered my thyroid is wacked out..going from high to low...which is making my anxiety worse, increasing heart rate, extreme insomnia and my hair has been falling out like crazy for some time now...IM 33!! My thing is...I've had major issues and diagnosis since I was 18. I mean, depression, anxiety, personality disorders, panic, IBS, fibromyalgia, reflux, ruptured ear drums for many years that cause balance issues, nausea, bursitis in my knees and hips and who knows what else. I can't think of some of the others..but I feel its enough. LOL! My point being that no matter what I was facing and dealing with I worked and worked and have since I was 16 nonstop. I love working and having a feeling of productivity and making a difference. When this SI issue started last January, it was not something I could just act like wasn't there. It was bigger than me. Long story short, if I could work I would. I can't. I'm still treating with the ortho, neurosurgeon, endocrinologist, and cardiologist. And now I'm going to have surgery ...again. I want to get fixed...but now I can't work to get money to be fixed. Kinda sad how that is...

SueD
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Joined: 01/30/2010 - 1:32pm
Hiya

After reading your posts, I so know what you're going through.

After my 2-level fusion in 2010, and my revision surgery in December 2011, I went for my post-operative appointment yesterday.

I asked why 1) I was still getting alot of back pain and 2) my right buttock/hip area is so much more painful now since my fusion.

I was told that recovery is much slower the more operations you've had (my 4th) and that scar tissue can be a source of pain too. Not much can be done about that. Also, because weight-bearing is now transferred and absorbed through the 2 fused levels to the next available joint, that's why my sacro-iliac is now dysfunctioning. When will this ever stop?

I don't want to have any further surgery if I can possibly help it. I'll only get even more scar tissue anyway!

I did have a steroid injection into the S.I. joint last May but it only gave me 24 hours pain relief. My surgeon doesn't operate on S.I. joints here in the UK, neither does he know of anyone who does, and has put me on his waiting list for another steroid injection. I can only hope that the length of pain relief will be for much longer this time. I know I can't have these injections indefinitely (I have had about 7 in my spine when they tried to treat my back pain years ago and each time, the length of pain relief shortened considerably, so they stopped them).

Is this continued back/S.I. pain something I'm going to have to learn to live with? Does it really get worse as we get older? My doc says I've got a "collapsed foot arch" now due to the way I've walked over the years to protect my back, so it hurts to walk when I'm trying to exercise to strengthen my back. PLUS, after I've rested (whether I can sleep or not, makes no difference), my fingers, back, knees, elbows and feet all blimming ache. It's soooooo depressing and I just feel like I'm falling to bits and seizing up.

Sorry for the pity party I seem to be sharing with you today but sometimes ranting at least gets it off my chest for a while.

I'm just thankful that we have a forum like Spine Health where we can do this and the members understand exactly what we're going through.

What have your specialists said about your conditions and your future expectations/prognosis? I'd be interested to know, thanks.

SUE
2 x Microdiscectomy 2005 / PLIFusion 2-level 2010 / revision surgery 2011 / NEVRO Senza spinal cord stimulator implanted February 2013. I WILL NOT GIVE IN / UP !!

heatherj78
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Last seen: 1 year 10 months ago
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Joined: 01/30/2012 - 4:30pm
yes..get it of your chest!

sometimes it feels good to unload something like this..especially when you feel (like i feel) that you are a downer for your family. i know they love me but my hubby is frustrated bc now i have to have another surgery..??? it sucks! i understand about the injections. i only got relief for 6 hours until the numbing meds wore off. the steroid hasnt helped a bit. they very first thing he mentioned after realizing that i had been right this whole time was "i have only done this si joint surgery 1 time. i don't feel confortable doing it. ill have to do some research to find out who i feel you should go to. i dont know anyone around this area that does them." then, i think he understood i was a bit overwhelmed at having another surgery said, "well, if this si injection works, and i hope it does, then you might not have to have surgery. lets hope for that." of course i felt that he was just trying to give me some hope that it wouldn't come to that. he said he'd see me in a few weeks and discuss my situation again with me and see how i did with the injection. im not giving up either!!!! i dont care how much it cost or how long it takes!!! i WILL NOT live like this. so, someone needs to fix me..ASAP. Wink

munch1958
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Last seen: 1 year 9 months ago
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Joined: 04/25/2012 - 6:24am
Had SI fusion& screw fixation 4.14.11

I have been in horrific pain ever since left iFuse and right screw fixation. Even after 50+ pt visits I still have pain. I went from one pain in the tush to 30 other kinds if pain. The success rate is about 50%; either your body is going to like it or hate it. Around the 2-3 month post-op mark many people develop thoracic pain. This surgery magnifies any type of spine pain.

I am a mod on a FB SIJD group with 500+ members. I've seen a lot of people in severe pain come and go over the past few years. There are very few success reports. Wish I had better news or could say SI fusion was a great success. Maybe in theory but not in real life.

My neck is weak, my ribs are locked up, all the weight load is on my facet joints so my lower back hurts. Just did a pain pump trial last week with 4 days in the hospital. Now I am waiting for insurance approval of the permanent pump.

Prior to SI surgery, I had kyphoplasty to repair 3 out of 6 spine fractures. After SI surgery, the bone cement extravasated (fancy medical word for leaked out of the vertebra) from all 3 and now it is in the disc spaces with a chunk of bone cement on my L5 nerve root. Tried 2 NS but can't get the bone cement or the hardware out. Once the joint capsules are punctured the joint is ruined so there is no going backwards.

gumballprincess
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Joined: 11/04/2012 - 7:00am
ifuse

My question to all of you is "WHAT HAPPENED" HEATHERJ78 Did you ever wind up having the SI-BONE ifuse procedure? DURRR You said "The main issues are the need to be non weight bearing for up to 12 weeks. Then PT can be rather demanding" Were you non-weight bearing for 12 weeks and was physical therapy as bad as you thought it would be? SUED I was just wondering how you are doing and what they or you have done since your post? MUNCH1958 I am so sorry that the screw fixation didn't turn out as planed and things aren't good, It's been six months. By any chance are you any better now? I had the SI-BONE ifuse procedure on August 6, 2012 and I couldn't be happier. The following is a link to my story if anyone is interested in reading it. Diane http://www.spine-health.com/forum/pain/sacroiliac-si-joint-problems/ifuse-surgery

I had the SI-BONE ifuse implant procedure on August 6th 2012.

ccleer39
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Last seen: 1 year 4 weeks ago
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Joined: 12/07/2012 - 12:25am
JUST AS CURIOUS AS GUMBALLPRINCESS

Hello:
I have had two fusions done in my back. L3-4, 4-5 AND 5-S1. The dowel did not fuse the first time which required me to undergo another surgery. needless to say, that didn't fuse either. apparently, my body does not like donor bone. Anyways, Wednesday, I had injections in my SI joints to see if they were the cause of my debilitation. sure enough, yesterday and today, I am able to walk and the pain is gone for the most part. As everyone knows, this means that I will be needing SI joint fusion soon. I will find out for sure next Wednesday. I am terrified as I have heard varying stories. I do know that if I don't have this surgery, I will totally losing my mobility soon. Can anyone tell me what your outcome was with this surgery?????

CCleer39

gumballprincess
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Joined: 11/04/2012 - 7:00am
SI-BONE ifuse procedure

To ccleer39 - Someone emailed me yesterday and your stories sounded so similar that I thought you were the same person. I just found out that you are not. Sorry for not replying sooner. In the post above yours is a link to my story and of course my e-mail address. Please tell me when was your L3-L4 fusion and when was your L4-L5-S1 fusion. By any chance was your L3-L4 a MIS - Direct Lateral Interbody Fusion with just a spacer verses pins and rods. When was the "another surgery" because of the donor bone and did you ever have/try a bone growth stimulator. As far as your si-joint(s) when did that start and I guess what else have you/they did and or tried. Looking forward to hearing from you, Diane.

I had the SI-BONE ifuse implant procedure on August 6th 2012.