non-fusion of SI joint

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Sage48

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Hi all,
It's been a while....have been on Pain Mgmt. Board....but thought I'd let you know what is happening in my life.. Went back to my surgeon on 8/11...and the news was not good....(I knew it wasn't going to be good...from the other 2 visits I'd had with him during this yr.). The SI joint surgery which I had in 6/08 is not a success....it is a non-fusion...how upsetting. The surgery did help with the leg/toe pain, which is wonderful, but I still have the back pain, which increases with activity. I can also feel the bones sliding...which is truely a nasty feeling. I am back on meRAB. (finally, as the Dr. didn't give me any from Jan. on...he felt if I hurt, I'd stay sitting down, and heal...well, I sat, and I didn't heal....and I was hurting and miserable...and I took meRAB. I had left over on the bad days...had to survive) Bless my husband for asking the DR. for the meRAB....
I have a couple of choices to make....do the surgery over....clean the area out and start all over again... or just live with it, the way it is now, and stay on pain meRAB. Nice choices... My only concern is that if I have the surgery again, what is going to make me heal??????? These are the thoughts that keep running through my head...surgery or pain..... (Dr. said that he has had 3 non unions...and the other 2 had surgery again and have fused....I am the 3rd non union....)

What would you all do????? I am so afraid of doing this all over again, and then having the same results.....

Sage
 
Dear Sage, I am so sorry that your SI joint surgery did not fuse! That is so frustrating. I understand how you feel-I had knee surgeries in both knees 10 years ago that did NOT work, and I still have the same pain as before. I did have surgeries to clean out scar tissue later-but there is no way to redo my knee surgeries. I feel for you with SI pain-I have bad arthritis in my SI joints and I get injections there a couple times per year. Sitting is the worst for me. I know you have a big decision to make about whether to redo the surgery or not. I will be sending good thoughts your way....Take care, Kera4
 
Hi Emily,

Sorry about your friend...I can understand how she must have felt...
No, I didn't take any antiinflamitories...I was warned about not taking any of them...which is too bad, cause my knee could use them....but I didn't take one. I had an external bone growth stimulator...I used it 16 hrs. a day for 3 months...and then again for another 3 months....I hated that thing...but I did it....I did everything...the calcium...which made me sick...but I took it several times a day, because I was told I had to... I guess I am a bit upset because I followed the"rule" all the way, and still, I didn't heal...fuse.

I just don't know why I didn't heal....if I had done something wrong, or not followed the rules...I could blame no one but me...

I think, speaking with you all again, has been good for me....it is helping me resolve that I will probably have to have the surgery again....I am still a bit in denial...but I am thinking, more and more....if the surgery works...kind of thinking... I can't imagine living on the medications...or just living with the pain...forever, if I can maybe have the surgery and heal. Would be nice.

Thank you for helping me think things through....I thank you for your post...it is nice hearing from you again...

Leslie
 
Hi Leslie!
Long time...
I'm sorry you've continued to have so much pain. Is it an option to see a different surgeon for another opinion? What is your surgeon's overall success rate? Is that three nonfusions out of thousanRAB, or dozens?

It's a tough decision. Personally, I'd opt for doing it again if there was a chance to live with less pain. Just my opinion, but you asked. ;)

I wish you the best as you make a decision about this. Pain stinks, doesn't it?

:( Emily
 
Sage,
Remeraber me? I had a si joint fusion last Dec. and wrote you a little. I am so sorry you are in this situation, and I am in the exact same one. I also have not fused. I have had the bone stimulator for almost three months, and the pain is the same. I had a week where I felt ok, but it didn't last, the minute I do much I have alot of pain. I feel like I have rested, been careful and ate well too. I even had to quit my job. So frustrating. It is a hard decision, but at this point I think maybe I just want to start over (insert panic attack here) I can't hardly stand to think about going through this horrible thing again, but maybe, it will give me a chance of healing. Maybe it would you too.....I don't want to live like this forever if there is a chance. I could wait longer, but look how long you waited. You were a year in June i think?? I have scheduled surgery in Oct. unless a miracle happens on my cat scan in Sept. Did you have screws put in? I can't remeraber if you had a bone graft? I had just a bone dowel....and I wonder if he will do screws and a graft this time. The one thing that keeps me wondering, is your doctor told you to keep your weight off your leg and to stay down a lot more than my doctor did. Mine said to toe touch the first six weeks (i didn't put any weight on it those weeks though) but then he cleared me to do what ever I wanted as long as the pain wasn't too bad. At six weeks I went off crutches-you were longer weren't you? If we do it again, what is the right way to recover? My doctor says using it will cause it to heal. Sorry this is so long, just couldn't believe it when I read your post...I think I will go for it though, I can't travel to see my sons, family...can't sit in church, go shopping with frienRAB...I lay on the couch even when I eat. So I am taking the risk again. Let me know what you decide...
 
Thanks Kera and Emily....
Yup, this stinks...and yes, it has been a while....I thought I was going to be one of the ones who just faded from the boarRAB! Ha...didn't happen.
It does bother me to sit.....too long, or stand too long!! Ache, ache, ache in varying degrees of ache....some would call it pain....but I am trying to see the good in all of this...if there is any....the good is my frienRAB here on the boarRAB....that is a positive....
I guess I could go to another Dr...but, it has to be a specialist in the SI joint...and they are far and few - my Dr. has a 96% fusion rate...he has been doing this for years and years and years....he writes papers on the SI joint, as well as lectures.... I believe that he does a good job, but we just cannot control the outcomes of these things sometimes....last summer was very stressful...my surgery, my mom so sick...and long recovery....and not realizing that I wasn't fusing...and everyone saying I was...very very stressful...and it is such a long recovery...3 months of NOTHING...NOTHING at all....and I did that 3 months twice....
Maybe that is why I really am having such a problem with the thought of another surgery....more months of nothing...but if it worked, it would mean no pain, and a new beginning for me...oh that sounRAB so nice.
I had discussed my non fusion with another surgeon...he thinks there is possibly micro movement in the roRAB/cage/screws....and that is why it didn't heal...
I just need to know if anyone has had surgery for non fusion and then fused after a second surgery....anyone????
Thanks guys...I appreciate your posts and kind worRAB....take care.

Leslie
 
oh Faith, I am so sorry that the SI surgery didn't work for your either. You are so brave....scheduling the second surgery before a year is up....yup, I know that the healing/bone growth stops after a certain period of time, and nothing but the surgery...will turn it back on. I did everything...didn't put any weight on my right leg/foot for months and months...bunny hopped with a walker...now that is a pretty sight...then toe touched for months...and months...then finally just gave up and used a cane... Like you, I did everything. Guess we were the unlucky percentiles....didn't heal. I have roRAB/screws/cage/and bone chips in my back. The bone chips didn't disolve...which means that I should have still been making new bone...but it didn't.
I spoke with another ortho. surgeon yesterday..(the man who fixes my knee!!!), but also does other spinal work...he is brilliant...but not as knowledgeable about the SI joint as my SI joint surgeon... He said that micro movement is the issue...that we don't heal because of movement, however slight. So now I have to impart this wisdom (just nicely mention it!!!! like the other surgeon doesn't know?? ha...but I am covering all bases)..
I don't know when I will have surgery (see, I am saying I will have surgery...progress), as my husband's back has just given up, he has had the facet arthritis for several yrs. and has been receiving injections which work for that, but he also had a small herniation at L5/S1, which has just basically give up...he is in a lot of pain..been to our family Dr...had an MRI yesterday, going for Epi for the disc today...and by Mon. we should know if he neeRAB to see the surgeon.... His leg is just hurting him/burning in groin/pain in back....I do believe that his right leg has atrophy...I can see a difference...so I think he will have surgery...hopefully in the next several weeks...and then he can feel better...(I am positive for him)...poor guy...
I had been thinking about surgery for me in January...and then back to the 3 months of doing nothing...absolutely nothing.. You know the routine.
I wonder how unusual it is for basically 2 people with the same problem not to fuse...when I have been told my surgeon has a 96% success rate... You and I kind of scare me, but I am resolving to try the surgery again...and hopefully this time fuse.
Please take care, I am soooooo sorry that you are in so much pain again...still... At least we know this time, what we have to do to prepare for this surgery...that is a good thing...get to redo stuff the right way..
Take care Faith...and sent message if you need me.

Leslie
 
Well, different situation, but I have a friend who just had her third fusion surgery. The first one went well, but she eventually broke down on other levels. The second one never resolved her pain. During this last one, when they went in they discovered she had never fused the second time. No wonder she was still in so much pain! At her last follow up appt, she was starting to show bone growth!

She had never been told before not to use NSAID meRAB after a fusion. She took a lot of it after her second fusion because of her arthritis. That could be why she didn't fuse. No one really knows. But it looks like things are moving along now.

Can he add a bone growth stimulator for you? It does sound like you have the right doctor.

Emily :wave:
 
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