Has anyone had chronic pain from 1st surgery and relief of pain with revision?

[LAL]

My daughter had anterior surgery T10 to L-12 in August 2006. She has had chronic pain ever since. She is curving again and has significant trunk rotation. No one can figure out the source of her pain or if revision would help. Today her surgeon (not the one who did surgery) suggested she try a boston brace for a month or two and if she had relief from pain while wearing it, he would consider doing revision surgery and going down one more level. I was just wondering if any of you have tried this or if anyone has actually gotten pain relief from revision surgery if they could not exactly pin point the source of the pain. One thing he did say was that the original surgeon should have went down one more level, because she is curving a lot below her original fusion. Also he is not sure if the last level is completely fused by looking at the x-ray, it may be or may not be he said. Any help anyone can give me would be appreciated. Also does anyone know of a good surgeon in Michigan that specialized in revisions?

[Lue]

revision

Hi, I had surgery in 2002 it went well, until about 1 year ago, I'm told I need revision surgery, I am doing it in May at Johns Hopkins I will be 68. Dr. said my back will be stronger, and the pain in butt and down leg will be gone, I sure hope so, because now I can't stand upright without support, and by noon I am bent over. The Dr. in Pa. told me to go there, he said it is the best place. ( don't mind saying I am scared) I also have a curve and a twist, good luck, Lu

[LAL]

Has anyone had revision surgery due to pain and actually had a reduction in pain?

This is very important. I posted this a few weeks ago and no one responded that they had revision surgery because they were in pain after the first surgery and actually had a reduction in pain after the revision. Does that mean that there is no one pain free after revision? My 20 year old daughter has been in pain since her first surgery. She is in so much pain she cannot live with it anylonger. Has anyone had a successful second surgery and had less pain than before?

[mgs]

I'm having my revision surgery on Tues, so it'll be a while before I can answer this question. I am hoping for a "YES!!". . .

I'll go out on a limb here, because maybe this dr is proposing something reasonable, but I've never heard anyone suggest a brace to use almost as a diagnostic tool to decide yes/no for future surgery. If your daughter is re-curving, doesn't that mean there is some area(s) of non-union? That's a slam-dunk for revision surgery. The surgeons cannot pinpoint any problem from a recent CT or MRI?? These are SRS orthos?

I am so sorry that your daughter has suffered like this.

[Pooka1]

There is a young woman with a similar story on the scoliosis support group. She had an anterior procedure and then lots of pain and then a revision and then some issues but I think she is resolving.

They finally traced her pain after the anterior procedure to the SI joint if I recall correctly and I may not. I'll try to find the threads over there.

All cases are different though. They have to help your daughter.

Good luck.

[Pooka1]

Okay she had a radioisotope scan and it revealed inflammation in the sacroiliac joint.

[jrnyc]

that is interesting to me, Sharon

the only injections that ever gave me complete pain relief were sacroiliac joint injections...tried them once...gave me complete pain relief for 3 beautiful weeks!

jess

[Pooka1]

Why didn't subsequent injections there work?

All cases are different but it is interesting that both the girl in this thread and the other girl had anterior fusions across the T-L boundary and both had bad pain. She also had severe pain at the L4 facet joint besides the SI joint inflammation which might just indicate not enough of the structural curve was fused but I have NO IDEA.

She had a "denervation" of the SI joint for sacroilitis which was not successful so she had the revision which was T2-L4.

And what is strange to this bunny is that if the pain is coming from the SI joint then why was her revision only down to L4? And why go up to T2 when all the issues appear to be below L4 inclusive?

All cases are different and bunnies are not surgeons.

[jrnyc]

we just haven't tried anymore injections in a while...i had a lot of lumbar injections in a short period of time...so we had to back off for a few months...
i haven't decided which injections i want to try next...it is very discouraging when they only last for 3 weeks!
i think the sacroiliac joints cause more grief than doctors give it credit for!


hi LAL...may i suggest you look up the names lapieper and naptown using advanced search on top of this page...
you might find their experiences relate to your question...

jess

[Confusedmom]

Yes, naptown had good results from her revision!

Jess, have you ever tried an S/I belt? I used one for a while to stabilize the SI joint and it did reduce pain. You wear it under your clothes and no one can tell it's there.


Evelyn

[jrnyc]

hey Ev
sending you private message...

jess

[LAL]

Thank you for the replies - Got yet another opinion since my post

Thank you all for your replies. We have been to 5 surgeons in the 5 years since her surgery trying to find out what is causing her pain, along with a neurologist and pain mgmt doctor. No one can pinpoint the cause. She has had multiple x-rays, 2 CT scans and 2 MRI's. SHe has also had an EMG. SHe has had botox injections, facet joint injections and been on every pain medication there is. Nothing seems to help even a little. 3 of the 5 surgeons said that the lowest level that was "fused" may not be fused, but cannot be sure. The other 2 say it is fused. The problem is every surgeon we have spoken to all suggest surgeries (except 1 said he would not do surgery at this time but she would need more surgery in the future and to just live with the pain because she will always have it) All of the surgeries they suggest are different. Different levels, some say anterior and posterior, some say posterior only, etc. If we could only find 2 opinions that were at least similar we may not feel so confused as to where to go from here. Her pain management doctor said he know of some well known surgeons that do use a brace as a diagnostic tool, so she is going to try it. Since then we have gone to see Dr. Harry Herkowitz at Beaumont, Royal Oak, MI and he right away said she needed to be "fixed" he wants to go up one level and down to the sacrum. She has significant trunk rotation since her surgery in 2006 and he feels that this may or may not be causing her pain, and he also says she could be in less pain, more pain, or the same pain after the revision surgery but she would be straight again. I understand there are not guarantees regarding pain, but if only one of them would say they found something that is at least probably causing the pain and had an idea as to how to fix it.

You have to wait months for appts. with these surgeons and then when you get to your appt. they give you 5 minutes or less of their time after waiting an hour or two in the waiting room. Dr. Herkowitz also said the brace "was an expensive test" to see if she needed surgery and said he thought she needed surgery and we should schedule it, but the appt went so fast we did't get a chance to ask questions and we were sent to the scheduling lady who said she could get her in for surgery within 3 weeks. We did not schedule the surgery because if we do we need to see Dr. Herkowitz again with our questions. Also we are going to try the brace for a month like the other surgeon said to see if any of her pain is relieved. I am sorry to be rambling, but her pain has been an issue every single day since her first sugery in 2006. It was in the beginning of 11th grade and she never did go back to school full time. (She did homebound and homeschool and did graduate, actually a semester ahead, probably due to not being able to do anything but schoolwork. She is going to community college now and taking mostly online classes and a couple in school each semester, but even sitting in class causes her so much pain she comes home almost in tears everyday. She cannot go to the mall or anything and walk around more than 45 minutes without pain and wanting to leave. I just know in my heart something is wrong, but no one seems to be able to figure it out. Her pain i causing so much turmoil in our lives, we are at our wits end and don't know what to do or where to turn.

[hdugger]

I'm really sorry to hear that your daughter is having so much pain. That must be incredibly difficult for both of you.

For the five specialists you visited, are you using doctors off the SRS list at http://srs.execinc.com/edibo/PublicDirectory? She really needs someone who is skilled in scoliosis revision surgery (even if it turns out that she doesn't need surgery), just to be able to evaluate her case. You don't want anyone who hasn't done a ton of scoliosis surgeries commenting on her case, because that's just going to muddy the water.

I have definitely seen people on this forum who were in chronic pain after their first surgery, and then had their pain relieved after their second surgery. But, that second surgery has to be with a really good, experienced surgeon. Otherwise, you're just tossing the dice.

Best of luck to both of you.

[Pooka1]

LAL that is heartbreaking. And it has been going on since 2006! We can send men to the moon but surgeons can't address this?

The girl in the UK had a radiological scan which I'm guessing is similar or even the same as the nuclear nuclear scintigraphy they do on horses to figure out not-quite-right lameness issues. Here is a quick blurb on how it can catch subtle things...

http://www.equinewobblers.com/Diagno...clear_Scan.htm

Searching on nuclear scintigraphy I get lots of horse references but the method was developed for humans as I understand it. It might be called something else in the human application.

Here is an abstract about humans and comparing various imaging modalities for sacroliitis which is what the girl in the UK was diagnosed with...

http://cat.inist.fr/?aModele=afficheN&cpsidt=2528064

Since you have exhausted all other avenues it seems, this might be worth a shot.

I want to wish you very good luck going forward. You guys need to catch a break. Something needs to happen. Stay strong. And congratulations to your daughter on graduating early and going to college through this huge vat of nonsense. She sounds like a great kid.

[LAL]

you may be on to something

That is an idea. SHe does constantly say she can't even lay in bed due to hip pain. Maybe she does have a problem with her SI joint. I notice none of her x-rays go down that far and the MRI and CT scan don't either. So how would they know for sure that is not her problem? Sometimes I wish there was a real Dr. House so we could just drop her off at the hospital and leave her there until they solved her problem...lol. We will look into the sacrolitis somehow, although I found these physicians do not like suggestions from lay people...you have to be persistant.