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SI joint pain after T10-pelvis fusion

I am almost 3 months post op from a T10- pelvis fusion where a screw was inserted into each si joint as an anchor for my long fusion. I've always had si joint dysfunction so I thought this would be helpful but I've had moderate to severe pain in my posterior pelvis since. I know I'm early and my surgeon suggested we could remove the si joint screws but we haven't discussed it further yet. 

Has anyone else experienced this and what happened? It seems to be worsening every week and I'm scared I'll have to get another surgery and if the screws are removed there won't be any relief because it will take on the workload for my trunk.

I'm being treated like I should be weaned off my pain meds by now but I don't think those people know I'm not even 3 months post op one of the hardest surgeries to recover from.  It makes me question if I'm behind or if this i's normal... 

Thanks for your time and sharing your experiences! 

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Comments

  • WLLadyWLLady Ontario CanadaPosts: 844

    Hiya!!!  We have the same fusion t10-pelvis.  The si screws are there to stabilize the fusion (you knew that...)....3 months is very early days!!!  I still have days i can feel those screws and i am almost 1.5 years.  For me i would feel the screws if i was trying to twist too much or lean forward and trying to bend my back-which the bars stops. But the forces transmit to the si screws.  So once i stopped doing that and learned to kneel on the ground to pick something up and not try to twist at all they settled down.  The fusion will not be mature until about 9-12 months so i imagine you are still very restricted by the dr in your activities-no bending lifting or twisting stuff....sometimes for me they ache or i will get like sharp jabby pain for a second...best is to make sure theres nothing wrong like a screw too long or something. What do you take for pain? For me i was still taking tramadol at 3 months but off the hydromorphone etc....by 6 months i was down to ibuprofen and tylenol as needed and now since about 9 months it mostly just tylenol and the occassional tramadol if i did somwthing totally dumb like spent 10 hours in an airplane lol. Oh the other thing that really helped me was ice and heat.  I was quite numb in the skin so i had to be super careful with heat but i would use a heating pad on medium or low (not high) for 10 minutes and then turn it off. Even though i couldnt feel the heat outside it helped a lot with the screw pain. And a lot of my pain was because they had to untwist my spine (and me) so my hips were out of alignment and once they settled the si pain did too. 

    But honestly-if you are in pain you need pain control. We are all different....i had tons of pain before my surgery so i actually found my pain levels after surgery were better than before....but we are all different.  We heal at our own rates-and healing from these fusions is not fast!!! 

    Best to keep talking with your dr tho and make sure you get adequate pain control. And make sure you arent accidentally blt-ing....even just a little bit will aggravate it! I hope this helps....we are here, please stop by and let us know how you are doing. Theres a few of us on here with these long fusions...and everyone is super helpful and nice.  Hang in there and i hope you find some relief!!

  • I'm still taking oxycodone for my pelvic pain. The rest of me feels great though and the muscle cramping is less now so I take valium occasionally, usually after activity when they get really tight. I have noticed several areas of numbness but the right thigh is the worst.

    I have diclofenac gel but it's so tender I haven't tried but I suppose if it's going to hurt anyway it's worth a try right? No pain, no gain...that's a terrible phrase! Haha.

    In 3 months if the pelvic pain hasn't improved we are going to discuss removing the screws or going for a full si joint fusion. I want to avoid more surgery but I will do whatever it takes to stop the pain and love again.

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  • I'm 3 months post op now and am allowed to bendand lift up to 30lbs.  Ha like I could! I seem to be in more pain in my pelvis and lately I'm feeling pain extending to my knees. I don't know if it's nerve related or si joint related.  

    I have found floating on the pool provides relief for a bit but it's very easy to twist by accident so I am still careful. 

    After much research it doesn't seem worth it to get my si joint screws removed or go for a full fusion because I've not seen 1 story where si joint surgeries have gone well and they all seem to get worse with each one. I'm suffering more than I did before the surgery. The only thing that's better is that I wont crush any more discs where I'm fused.

    If anyone has gotten better after one I need to know.  There seems to be zero hope for me and I'm sure I'm never going to return to the only activities that brought me joy and peace and i'll continue to barely get through the day for what remains of my life.... is there any hope for us now? 

  • WLLadyWLLady Ontario CanadaPosts: 844

    hiya!  after my T10-S2 with pelvic fixation my pelvic screws hurt me quite a bit until about 6 months.  there's no way i could have lifted 30 pounds at 3 months LOL!  i was JUST headed back to work, and could carry a light bag-like i'm saying 5 pounds at the most!  i finally just got a desktop computer at work so i wasn't carrying a laptop!  yes, twisting in the pool is super easy.  especially laying on your back and then trying to turn to swim forward on your front!  just be careful and try not avoid it.  my pelvic screws i can still feel off and on, but it's more an achy thing now.  if i tried to twist too much they'd come alive with a vengence though.  and leaning over - bend at the hip - don't try to bend at the waist, bend your knees and hips and squat down gently, that will help take the pressure off the pelvic screws-theyre there to help stabilize the fusion.  are you on anything for pain still?  oxy?  after 6 months i was allowed to take an antiinflammatory-ibuprofen, and that really really helped the pain in the SI joints.  the other thing that helped me was getting physio (i was allowed to at 3 months and if i remember correctly i could barely lay down on their bed!!) and gently, slowly and carefully getting my muscles back with supervision to make sure i was doing everything right.  i did have issues with my hip, which i first thought was SI, but later settled into my left hip, from being out of alignment with the scoli for so long..that has slowly gotten better with time.  now at 1.5 years (in 5 days...) post surgery my SI screws only ache a bit when the weather changes, or if i do too much lifting etc.  most of the time i don't even know they're there anymore.  it will get better.  remember it can take 2 years to heal after this surgery-i'm still healing at 1.5 years.  it will take it's own sweet time to get there too.  important though is you take it easy and let it heal, and once the fusion has solidified (about a year) you will notice a huge change in stability and hopefully in pain too-my fusion "matured" at 9 months and my pain dropped dramatically at that point too!  and my balance got better, and then i could really start on getting my muscles back because i wasn't sore every time i moved.  hang in there....it is a very LONG healing process, and you are still really really early days!  just because you are allowed to lift, doesn't mean you are ready to-listen to your body and if it's sore and hurting bad you are doing too much.   I had the SI pain, and also pain into my left leg-and that was nerve pain from scar tissue along my surgery site.  for me the pain went past my knee and was L4-L5, L2 and L3 innervates muscles above the knee so you might see if you have scar tissue in that area that needs breaking up-my massage therapist helped me with it, but i was not allowed to get massage until 6 months post surgery because the incisions in the muscles were still healing, and they didn't want me to tear anything while it was healing.

    Did the dr refer you to physio?  i really really highly recommend it.  i honestly know, 100%, that if i was NOT in physio for the last year and a bit i would not be anywhere near where i am today.  they taught me how to move again, safely and how to train my muscles and helped me when things were really not getting better-like my hip aching and i had sciatica from scar tissue they managed to fix for me, and how to stretch the right way so i wouldn't put pressure on the fusion....stuff like that.  hang in there.....i know what it feels like, at 3 months i was "shouldn't i be able to go and do now?"....trust me, it's really early days.  the mantra for this recovery is patience, patience and more patience!!!!!

    if you can get something to help with the pain from the doctor and then make sure you aren't making those screws angry by putting stress on the fusion.....and give it a little more time....hopefully they'll settle down, and if not then maybe take them out once the fusion from T10 to S is solid so it doesn't really need the support anymore.  but that fusion will likely not calcify until 9 months to a year to be strong....

    i know waiting isn't what you want to hear....hang in there, i certainly know what you are talking about, and mine did settle down with time....

  • hi ya..yes what WLLady said..patience and more patience. I was fussed t9 to s2 with pelvic fixastion. at 3 months post I was still VERY uncomfitable..but at 6 months I noticed a jump. then another around a yr..i am 15 months post and they are still telling me I have a ways to go..not to give up. I just started back to pt again to help with range of mostion. a lot of my groin pain is from my hips, everthing was shifted during the surgrey and it all has to settal back done..my pt gal told me to remember my bodu did things a certain way for 58 years before my surg..now I ecspect at 15 months for the same..not going to happen..she told me that word we all hate here.. patience!

    so your at 3 months yep I felt down at 3 months also..thought I made a big mistack having this surg..plz hang in there..number one your not alone we are all here for you..number 2 YES..there is hope. there is allways hope..i was told that two years from now I could still get nervers regrowing and still see inprovements..bottom line its way to early to feel like you do..so stop in here and vent..tell us bout the good days and the baby steps forwards..a nd share with us the bad days so we can help you through them.  the saying goes with this surg..3 steps forwards..one back wards..there will be set backs..at 15 months I just had a small set back, but then a leap forwards..its crazy..but we understand how you feel, we have all been there..so hang in there..Don't give up..theres hope..and we are waiting to hear from you.

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  • Thank you for the support..I have really bad days and then I have days I'm just getting by. I knew I needed temporary relief because increasing mys only helps so much. I got into pool and tried some new exercises and I'm soooo sore today but its that old workout sore I thought I didnt miss Haha. My pelvis is still very angry but just getting to float and feel zero pain is so good for me physically and emotionally. I cant take NSAIDs because I break out in hives...my body is a constant war zone with multiple disorders but that's a whole other forum.

    I knew it would be long and difficult journey when I started and it's easy to forget that in the moment. 

    I start PT again in a week even though I've been doing my own on the meantime but I certainly hope there is something new they can teach me. I'm always open for new stuff cuz I bore easily. 

    Right now the pain in my pelvis is so bad I can barely take a deep breath. I think I've officially decided no more surgeries unless it's required for loose or broken equipment. Seems every surgery I have my pain gets worse so I'd rather not get worse unless the benefits are worth the risk. 

    It's so wonderful to have a community here who really understands and is going through it all too. I dont wany this scaring anyone about to have the surgery. I have set myself up for reduced issues in the future because now my spine is stable so im incredibly greatful for that right now. I went in with realistic expectations and that's the best I could do because this ismt am easy thing and its not a magic cure, it takes patience, dedication, strength and strong will and so much support. Thank you all sooo very much!

  • your most welcome..your part of the family here and we are all going throught ups and downs together..we all get down from time to time..this is a very hard recovery and no one who hasn't gone throught it can understand it..so..give us the good updates when you have them, but most of all share with us the bad monents and maybe just maybe one of us can help with something new to try or just to remind you..we here for you. your never alone.

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