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Sami
10-14-2011, 11:20 AM
I struggled w/back, hip, leg pain for 2 years and since imaging did not show anything except scoliosis and everything I did did not help, they did surgery (fusion T4-L1). One year after surgery I'm still in pain and unable to sit for significant amounts of time, so I lost my job. They are now suspecting the SI (sacroiliac joint). Anbody had a similar experience? Anything helped?

Heidiv2
10-14-2011, 03:21 PM
But mine was prior to surgery. It was while I was pregnant and I actually thought that it was sciatica. I just knew that I was in misery, ALWAYS!! I was saved by Physical Therapy staff and they even taught me to put myself back in (with help of my family). Have you been to Physical therapy? They measured my legs to see if I was out of place. It was very prone to coming out after the first time and they said that the longer that it is out, the more chance of reoccurance (thus the home exercises) HTH

loves to skate
10-14-2011, 04:22 PM
I never has SI joint pain until a couple of years ago when I slipped on some leaves and fell down pretty hard. Now I think there is arthritis in that joint, so I still have pain there from time to time. I take Mobic, a NSAID and it does help somewhat. I wish there was a permanent solution. Maybe a cortisone shot would help. I will be seeing another scoliosis specialist locally soon to see if that is an option.
Sally

jrnyc
10-14-2011, 05:37 PM
hi Sami
i haven't had surgery...yet...
but i have severe pain in lower spine..
we figured out...after nothing else worked...that the SI joints are causing my pain....
i now get injections in SI joints every 10-12 weeks...i get really good relief in lower spine for about 8 weeks....
besides scoli, i have spinal stenosis & spinal arthritis, along with DDD, listthesis, hypokyphosis, etc....
the injection on left side really hurts...the doc says i have a lot of stenosis in that joint...
the right side goes very easily....
nothing else helped with lower back pain...i had epidural injections, nerve ablation, facet blocks, etc....

best of luck
jess

lisazena
10-15-2011, 04:25 PM
Hi Sami,
How was your SI joint problem diagnosed? Process of elimination? I am considering surgery because of problems with my legs and feets and I have degenerative changes in my back, but nothing that clearly explains my problems. What were your pre-surgery curves like?
Hope you finally resolve your problem.
lisa

Sami
10-15-2011, 05:47 PM
I have had several rounds of physical therapy and I do pilates. I got some relief, but not enough to let me lead half a normal life. Only 2 out of the 9 therapists I saw theorized my pain was due to SI joint.
Originally I had pain in my R shoulder and inbetween my shoulders. After I saw 2 local scoliosis specialist and was told to expect more pain with age due to my scoliosis (thoracic curve 45 degrees, lumbar 35), I went to a DO for osteopathic manipulation. Three days later I woke up with incredible pain in my lower back and I have been debilitated ever since. I did all kinds of shots and ablations, facets and SI joint, and epidural with about 20% improvements with SI ablation. Since nothing else was wrong, but having a curve, Dr. Hostin in Baylor decided to correct the curve. Now I'm back to the same old pain, but with stronger meds to help control it. Now the big speculation is the SI joint. Many times when I go to my PT he finds one hip uplifted or rotated or shifted. I did an SI ablation a week ago and PT gave me an SI belt which I will try in a couple of weeks after I see what impact the ablation had. One pain mangement PA suggested dextrose solution to help tighten the cartiledge in the hip area. He is optimistic that this procedure will help improve my functioanlity, though I will never be pain free, but we have to make sure it is the SI joint. I'm also supposed to see a reumatologist.
All the tests do not show anything. My inability to sit has been my big enigma for the last 3 years. After I send this message, I will have to take at least a 1 hr break and maybe include a 10-15 minute walk to combat the impact of the sitting I did to write this message.

jrnyc
10-15-2011, 09:32 PM
the pain in my lower back keeps me from walking....the pain spreads out into my hips, kind of like
when i first herniated discs....the shots in SI joints relieves the pain in my entire lower back for 8 weeks...
i get shots this Tuesday...pain management doc who is also a surgeon...
until we tried the SI shots nothing worked....and i tried and tried...
it was a fluke that we tried these shots....i think they work because my SI joints are near my herniated
discs...they re not near my scoli curves....

just a layman's suggestion....maybe your doctor might have insight into whether shots into your SI joints is worth a try....

jess

Sami
10-16-2011, 08:54 PM
10 days ago with not much help. I feel stiff in my lower back and an achiness deep in my glutes. My legs feel achy as if I have a horible flu especially below the knees, the same symptoms I had with SI joint before surgery. It is very frustrating when all imaging show a wonderful back and I feel so much pain.

LindaRacine
10-16-2011, 11:09 PM
Hi Jess...

You should ask your doc, but I don't think the issue is that your SI joint(s) are near the herniated disc. (The steroid stays pretty close to where it's injected. I think the closest intervertebral disc is inches from the SIJ.) I suspect the issue is that your SI joint is where the nerve is getting trapped. It's possible that your herniated disc is not painful (not a surprise). The problem with pain from the SI joints is that there's not really any great surgical solution. I think that fusing SI joints has been pretty unsuccessful. Hopefully, the injections will keep on working. :) Have you ever worked with a good physical therapist?

--Linda

jrnyc
10-17-2011, 01:13 PM
hi Linda
the PT's told me there is not much they feel they can do for me!!!!

the herniated discs definitely HURT!! i remember the day i did it....
i lifted a little kindergarten chair! the pain was unbelievable...similar
to the pain i have in lower back...Lonner says he thinks my curves
aren't changing much, but my discs are getting worse....that is partly
from what he saw on the MRI and partly from his exam..

i don't understand why surgery wouldn't help.....Lonner would take
out the bad discs from the side and put in "spacers"...
why wouldn't that relieve the pain? why do surgery if i won't get
out from under the worst of the pain...?!

every doctor and surgeon i ever met with commiserated with me on
how awful disc pain can be! i have a friend in CA who had
arthroscopic surgery for discs...he is doing great now...

jess

LindaRacine
10-17-2011, 02:23 PM
Hi Jess...

It's possible that the herniated disc hurt at the time of the injury, but doesn't hurt any more. Or, it's possible that you injured the SI joint at the same time as the herniated disc. Since the previous injections at the level of the herniated disc have not helped, but the injections for the SI joint have helped, that's a pretty good indication that the SI joints are what is causing your pain. Fusing your scoliosis may or may not change the stress on your SI joint.

In regard to physical therapists, I tried physical therapy a bunch of different times prior to my first surgeries. I essentially got the same exercises from everyone. Then, a few years after my first surgeries, I found a physical therapist who was entirely different than the others. She spent the first hour measuring strength and range of motion, and figuring out exactly what I should be doing to relieve the pain I had. And, sure enough, within a few months, the pain I'd had for two years was gone. It's entirely possible that physical therapy won't work no matter what, but if you can figure out if there's a good therapist, specialized in spine, you may have some success.

Regards,
Linda

jrnyc
10-17-2011, 11:08 PM
thanks, Linda...
writing to you private message....
kind of feel a little like i am hijacking the thread, even though the topic is still SI joints...

jess

jrnyc
10-26-2011, 01:04 PM
just got another SI joint injection on right side...

surgeon asked me if i had heard anything about latest procedure fusing SI joints...
i have not...
???

he is taking a seminar with Dr Berven...i think in New Orleans...or Atlanta...cannot remember what he said as i
was bracing for the needle....class is about minimally invasive, i believe...i think he said Dr Anand will be there....

this surgeon said he is going to be applying for SRS status....
i like him...he only does my injections in lower spine...he doesn't use botox, so he doesn't do
injections in my upper spine....
i have not had any other procedures with him...
but i like him...

jess

LindaRacine
10-26-2011, 01:23 PM
just got another SI joint injection on right side...

surgeon asked me if i had heard anything about latest procedure fusing SI joints...
i have not...
???

he is taking a seminar with Dr Berven...i think in New Orleans...or Atlanta...cannot remember what he said as i
was bracing for the needle....class is about minimally invasive, i believe...i think he said Dr Anand will be there....

this surgeon said he is going to be applying for SRS status....
i like him...he only does my injections in lower spine...he doesn't use botox, so he doesn't do
injections in my upper spine....
i have not had any other procedures with him...
but i like him...

jess

I haven't heard anything new in terms of fusing SI joints. They've been doing that for quite awhile, unfortunately with fairly poor results. I did a search just now, to see if I could find anything new on the subject, but didn't come up with anything. If you find out anything more, I'd definitely be interested.

By the way, I attended a webinar on Monday with the topic of minimally invasive techniques vs. open techniques in spinal deformities. The panel included Boachie, Berven, and Anand (as well as a few others). The takeaway for me was that minimally invasive can work very well if one chooses a surgeon who has a lot of experience in the technique, and if that surgeon chooses the appropriate patients. It does not appear to be working well in patients who have rigid spines (just about everyone over the age of 55). It was also clear that long-term studies are needed, as there's a fair chance that the long-term results won't be as favorable as the short-term results.

--Linda

Lue
10-26-2011, 06:27 PM
Hi, I was fused at L5-S1, May, very successful, about 2 years ago I was told it does not fuse well, but when I asked the Dr. at Johns Hopkins that, he said they fuse that joint all the time, I had revision surgery in May and June, I have no pain and can stand upright without support. Lu

LindaRacine
10-26-2011, 07:59 PM
Hi, I was fused at L5-S1, May, very successful, about 2 years ago I was told it does not fuse well, but when I asked the Dr. at Johns Hopkins that, he said they fuse that joint all the time, I had revision surgery in May and June, I have no pain and can stand upright without support. Lu

Hi...

I think you may be confusing S1 with SI. The SI joint is a soft tissue space between the sacrum and the ilium. L5-S1 fusion is a relatively common surgery. SI fusion is pretty rare, mostly because it's largely unsuccessful.

--Linda

jrnyc
10-27-2011, 02:24 AM
i doubt Anand would be backing off...he told me 2 years ago he ONLY believes in using minimally invasive approach..for all scoli surgery for ALL age patients...
2 years ago i spoke on the phone to 2 of his patients...both were over 60, both were very pleased with their results...
one was 2 years out of surgery, the other 4 years out...i am not calling that "long term results"...just a start

jess

LindaRacine
10-27-2011, 11:01 AM
I thought Anand was promoting its effectiveness in older patients. Has he backed off that claim?

Well, I don't know if he's backed off, but he definitely admitted that patients with stiff curves were not good candidates for MIS.

Lue
10-29-2011, 04:35 PM
Thanks Linda, I guess you are right about S1 & SI joint, I don't know for sure, I do know my tail bone still hurts since May. Lu

jrnyc
10-30-2011, 01:21 PM
well, then he has changed his mind in the last year or two...
the patients i spoke to were older...well above 60...one said she had osteopenia...
i also have osteopenia and Anand told me he thought that was no problem...

i actually spoke to a third patient of his 6 months later...she was 70 years old...

i do not know who...whom...he would be ruling out....
maybe those with full osteoporosis....?
he very clearly told me ALL patients, any age, were good candidates for his MI procedures....
bar none....
so something has changed his mind since then....
perhaps less than satisfactory results...?

he said he did not do "open" surgeries any more...
very adamant that he felt it was old fashioned to do so!!!
i discussed the consult and Anand's comments later with an east coast surgeon,
who smiled when i told him about the conversation...

jess

Sami
11-27-2011, 02:33 PM
Anybody had heard or had any experience in the use of prolotherapy for the treatment of pain and instability in SI joint?