Hi to all...haven't been writing or posting for a while...kind of lurking. BUT, I am a bit concerned about the results of my surgery last June. I have had continuing pain with activity, and have been on pain meds. all of the time since surgery. I see the surgeon in 10 days...for a CT and visit. Want to see what he thinks. (I had a sacroiliac fusion with rod and cage..).. I know the recovery for this surgery is very, very long...but it is 6 months...and I still have pain...very concerned. Guess I just need a little moral support right now. In Nov. the Dr. told me that the MRI in Oct. showed very little fusion...and that the screws used can back off or break after 3 months...CAN..but not always.. This has me very worried...I hope that I am finally fusing better... I know that I am kind of on my own here...unusual surgery etc. But has anyone else been told this about a fusion?????
Any suggestions are appreciated... Take care...and thanks.
Hey Sage, There really is no definitive test to check the integrity of a fusion, All 3 surgeries I had were concidered a sucess untill they could see sheared off screw heads, broken rods or space around the screws where bone hadn't even grown into the threads of the screws. That's what iI' dealing with now, I'm fuised from L1-S1 and teh screws in my sacrum just pull in and out when I bend and crucnh and get stiuck in awkward positions. It can definitely happen with posterior aproaches. You said he did use cages which gives you more surface area which is a plus.
I've always been told it takes a good year to fuse. You may not see progress from week to week, but look back 1 month or 2 months and it's easier to spot. If your taking less meds and are more active, walking farther, any iomprovement is improvement. If the surgery re;ieved nerve pain but didn't relieve backpain, That's also improvement. I know we have great expectations, but there is a percentage that wont benefit fully or may even need revision.
Nothing to be ashamed about when it comes to healing. Not eveyone heals at the same rate and some of us have to live with never healing properly.
Take care, Dave
Dave, thanks for your reply... so sorry this has happened to you. The reality of not fusing is scary. The issue of nuts and bolts not holding...that is more scary. Yes, I am on a lesser pain med...but could use the other med. If I walk or stand too long I am in greater pain. The nerve pain down my leg, ankle and the nasty little toe are much better...thank goodness. The pain I have now is in the area of the surgery...the sacrum and lower back on the right side. If I walk too long I feel like something is slipping in the surgery area...WHAT COULD THAT BE???? YIKES.
If I stay off of my feet (like the DR. wants and has told me...I feel better) I am stupid, I know it, I know it, I have to stay off of my feet...but really, this has been over 6 months....I just got back on my feet the end of Sept...and using the walker...(I have been skipping the walker at home...it is just too much, and I have almost fallen several times when I catch it on things in the house.) I am trying to do as I was told...but it is sooooo hard. I am hoping as you said that time will take care of the fusing...I have a CT scan on the 16th and an appt. with Dr. the same day...so I'll know what is up...and can only hope that I am fusing more.
Thank you for listening to me....and for your post...I know that I am not alone in this...it is just so hard some days...as you know. Thanks again...take care.
Thanks to both Rita & Izzy's Mom for your concern. Yup..nice to have had a strange problem..very few to share the after effects of treatment with. I do appreciate the support...it does mean a lot...thanks again.
In Nov. the Dr. told me that the MRI in Oct. showed very little fusion...and that the screws used can back off or break after 3 months...CAN..but not always.. This has me very worried...I hope that I am finally fusing better... I know that I am kind of on my own here...unusual surgery etc. But has anyone else been told this about a fusion?????
Any suggestions are appreciated... Take care...and thanks.
Sage, I have never ever heard this before but then again I am just a spinney who has been thru alot and not a MD. Fusing can take up to a year or more and to be honest one can not always see fusion on an xray. A CT scan done after a mylegram is generally the best way to see if there is fusion or not. With this said, one can't always see fusion and they don't know until they open you up.
Remember to not bend, lift, or twist so that the fusion can set up. Also be sure to eat correctly and get your calcium in. Lastly NO SMOKING, no anti-inflammatories/ steroids and reduce those diet sodas All of these item
last items are so important.
Lastly, remember you have been thru MAJOR surgery. A typical fusion patient can take anywhere from 12 weeks to a year or more to recover. It all depends upon the condition your body was in prior to surgery, the complexity of your medical case, your core strength, etc. With this said, your surgery is a little more complex because of the location so you will experience a harder recovery.
If I remember right after surgery, you were also taking care of an ill family member. Correct? I am sure this did not help your recovery any and may have set stuff back a little. Just my non MD suspicions.
Fusion recovery has many up and downs. I highly recommend that you make a list of things you could not due prior to surgery and right after. Once a month look at this list and consider drawing a line/highlighting the items that you can do now and put a date achieved next to the item. This will show you visually that this process is SLOW which sometimes makes it harder to see the baby steps of progress.
Good luck and I will try to check in more frequently as we continue to heal and have a good new year!! This year must be better for us cpers.
Thanks Izzy for your kind thoughts...and concern...
oh thank you for your reply...especially after the surgery you just had. How are you doing?? I haven't read anything today..was just checking in for a min., but want to send my prayers for you...and for a better year also...for all of us.
I know that I was probably set back by taking care of my Mom from Aug...until almost the middle of Nov. I know that this did not help my recovery at all, and I feel that I may have delayed my healing (hope that is all I did). I read back on my posts in Aug...and I was feeling pretty spiffy...had more pain but was looking a lot more positive... I am having a CT scan on 1/16 as well as an appt. with the Dr. the same day...he will have the scan and report by the time I see him. He was the one who scared me last visit about the breaking and backing off of screws etc. I have been trying to stay down and not doing any lifting etc... I also am just hoping that this is a delay in the fusion...slow healing...let's just hope and pray that is all that it is. Your reply means so much to me...old friend...thank you...I know that I am not alone in all of this chronic pain stuff...unfortunately. Take care...heal well..
I read your post full of fear and tears... I am with you and feel your pain.
You are absolutely right about long recovery for spinal surgeries. I have to say another thing: one dear friend of mine who had spinal fusion was told a year later that she is not fully fused. She had to have another surgery and during the surgery they discover she was fully fused.
Same thing happened to me after my first spinal surgery.
My Surgeon told me that no 100% accurate tests which can show fusion or non-fusion, only if they open you up... So don't worry about this. I also learned that if 3 dr. look at same MRI pictures see different levels of fusion: with me one of them said I am fused, another one said I am not fused, and the third one said I am about 60% fused! How about this?
And another thing I was told: since you have spinal surgery don't expect pain free life. I asked than why I should have the surgery? He said: realistically you will be better than before, but you will never be pain free.
I had 2 of them as you know; my last one was a year ago and they require I go every 6 month to see my surgeon assistant. Last time i was there (a week ago) i told her my about my pain and concerns. She consults with my surgeon and they decided I again need MRI on all 3 levels and CT on lumbar area. I also need to see Neurologist. When they get all results, my PM gets report and if I don't need further surgery - I just will continue be under my PM.
Best of luck to you. I am glad I could share with you my experience, hope it will help you!
I am so sorry for what you are going through. Back pain, surgery, recovery are the most disheartening things I believe one can go through.
I agree with Moldova-I am not pain free but I am ale to do 90% of what I could before surgery with 1/3 of the meds.
Pepper had a great idea with the before and after list.Its like counting your blessings while you wait out a storm.
I am praying as I type and will pray for you all day when I see the color purple. I have a friend I do this with-we pick one color a day and pray for each other when we see it.
Awww Moldova...I know what you have been through...really really tough surgeries and other stuff in between. I thank you for your reply...I know that there is a good chance that I will never be pain free....that is ok...when I had my acdf I was so fortunate...after about 6 to 8 weeks...it was wonderful...and I have never really had any problems in the last 5 yrs. with it. So I was kind of expecting the same type of thing with this Sacroiliac joint fusion...ha. Did expect 3 months of really really tough times...and got it. BUT, I think I messed myself up running to the hospital and nursing home and then taking care of Mom at home... Thinking that is why I haven't healed as I should have. The leg/outside of knee and the little toe are good now...little pain...just once in a while.....but the back where the surgery was...ouch...and I don't like the feeling of slippage inside when I put weight on the surgery side of the sacrum....this is the big concern to me. BUT, like you said...they can't really see too much unless they open you up...no thanks. I will have the ct scan tomorrow...see what can be seen at that time. My daughter will be with me...she's really good with this stuff and asking questions of the Dr...(he isn't as nice to me if I don't have someone else with me...don't know why...)
I hope your tests come out with some answers for you...
Prayers and hugs to you....
Atwork...thank you for your reply and prayers....the reminder of color to say a prayer is a sweet idea....thank you! I know that I am better than before sugery...but I still am having some issues which concern me. I know that I will not be totally pain free...it would be nice to get to a level to just take an advil....that would be a good level!! Thank you again for your kind thoughts!
Hey Deb...thanks for the concern....I just posted a message about my Drs. visit...not good...but what can I say...that sometimes things don't work out...but I am trying really, really hard to make the healing happen!!