Sacroiliac joints supposed to be fused with long fusions?

[TwinmomTN]

Ed,

When you say pelvic anchor do you mean the long iliac screws (is what I've been calling them)? Dr. O'Shaughnessy put in the third iliac screw when he
went in on my revision to try to find the source of my excruciating shocking and unbearable pain. Needless to say when I came out of surgery and was told
that a third screw had been put in I was NOT happy at all!!! What scoliosis surgeon does that?!

[titaniumed]

Pam, Yes. Pelvis is a better layman term..... Not everyone knows what the ilium is....Heck , Ilium could pass for a Shakespeare tragedy. You know, "to fuse or not to fuse?" (Today's scoliosis forum humor) I take it you "are" fused by now....could this have been missed by everyone looking at your case?

Surgeons will operate on the fly often and many decisions are made after they get in. I was told I could be fused "As is" with no correction. Trauma surgeons do the same thing, only they have just a few minutes to save lives. This is not out of the norm. (Placing the 3rd screw)

Do you have an x-ray you could post? I have seen 1, 2, and 4 Ilium screws or pelvic anchors, but never 3.

I am wondering if you see someone else, would they order a different view or setting on diagnostics, and see something new that no-one else is seeing? Is there a special MRI or MRI procedure, or X-ray machine, CT with different contrast, that will reveal the answer? It sounds as if you have a nerve that's inflamed, no-one is seeing this? Has anyone recommended any NSAID's or a Medrol pack (Oral steroids)? These have quelled much of my prior nerve related pains. For example. Diclofenac, Celebrex. A doctor has to prescribe these strong anti-inflammatories.

Flouroscopy assisted radiographs....Linda, do you know if anyone has done this for spine looking for loose hardware? I have always wondered about this.
https://www.ncbi.nlm.nih.gov/pubmed/27665244

Ed

[LindaRacine]

Flouroscopy assisted radiographs....Linda, do you know if anyone has done this for spine looking for loose hardware? I have always wondered about this.
https://www.ncbi.nlm.nih.gov/pubmed/27665244

Ed

I know we did it at least once while I was at UCSF. It's typically not necessary, as loosening is usually discoverable from haloing around a screw.

[TwinmomTN]

To answer some of your questions Ed. I had a CT myelogram when this pain first reared its ugly head about three months post op. Yes, Lenke put me on steroid pack which
did not touch it. I've had epidural injections at multiple levels, every non-operative form of treatment possible. Then had a revision that was basically looking for cause of this horrific pain, but he did laminectomies, nerve root decompression. I was great for about 7 weeks then it returns again. So, then I was told "there's nothing more that can be done" and dumped into the pain management portal and quality of life has been pretty much non-existent. Needless to say, this disabled me and has totally ruined my life- bottom line. I just cannot go on like this....at the end of my rope.

[titaniumed]

To answer some of your questions Ed. I had a CT myelogram when this pain first reared its ugly head about three months post op. Yes, Lenke put me on steroid pack which
did not touch it. I've had epidural injections at multiple levels, every non-operative form of treatment possible. Then had a revision that was basically looking for cause of this horrific pain, but he did laminectomies, nerve root decompression. I was great for about 7 weeks then it returns again. So, then I was told "there's nothing more that can be done" and dumped into the pain management portal and quality of life has been pretty much non-existent. Needless to say, this disabled me and has totally ruined my life- bottom line. I just cannot go on like this....at the end of my rope.

Pam, ....just a hunch.... but this sounds like what happened with Jackie.....Do you know her story? I have read and followed every one of her posts.

She did multiple surgeries, long fusion, the works, and had the horrific pain, her scoliosis surgeon was saying the same thing, "Nothing can be done" but she pursued and finally went up to Rush in Chicago and had the Neurosurgeons take a look. They finally diagnosed her with Arachnoditis....which involves a completely different medication program. Neurosurgeons need to be trained to look at the MRI's for this disorder. At some stage, one of her doctors "suspected" and pointed her in the right direction. This is why you never give up.

Here is her thread...
http://www.scoliosis.org/forum/showt...ghlight=jackie

One of the doctors states in one of the videos that I posted (in the thread above) that many of us (scoliosis and spine patients) have arachnoditis, but don't know it....

Also, many doctors are not trained to look for this.....which can be tricky as a layman when running out of ideas.

I would PM Jackie.

As a scoliosis patient, it makes sense for me to follow my disease and try to stay informed which means reading all the scoliosis threads and posts. If Jackie never reported, we would never have known about this, this is why everyone's testimonial is so important, good and not so good. Being informed is a good thing and we deserve to know the truth about our disease.

Ed

[titaniumed]

Yuja Wang plays Chopin....

Something non-scoliosis related.....

She is the most exciting thing in classical in a long time..... She is the best pianist in the world.

https://www.youtube.com/watch?v=b_E51SV0Zus

Ed

[TwinmomTN]

Thanks so much Ed! and Linda too!

Had an appointment today with Brett Babat, but no help here either. He refused to remove any hardware, saying it would be too harmful. I'm wondering
if there has been too much time since surgery and too much growth around the screws for safe removal?

This is getting soooo old!!! Extremely frustrated and upset that no so called dr is willing to help me. My father was a dr and he would never have treated any of his patients with such abandon as the treatment that I am receiving. They take an oath...do no harm. Turning their back on a patient is doing harm IMHO.

[LindaRacine]

Pam... If you're interested, I can probably get Dr. Qamarani to talk to you via email or phone. If that's of interest, send me your phone and email info via PM.

--Linda

[titaniumed]

Pam, You have had some of the best scoliosis surgeons in the world in agreement on the screw removal question....Multiple opinions in agreement. There has to be something standing out, screaming "remove me, remove this screw" and its not there.....Back when we had big curves before we had our surgeries, we had a pretty good reason for surgery, and while my surgeon made me beg, there was no running into surgery.....It took me 2-1/2 years for a green light. Whats happening to you is not an easily identifiable justification to move forward quickly.....and its going to take some time. I think at some point, someone will be thinking about your situation, and call you for a possible specialty referral.

For us, it sounds simple to just remove a screw....but its deeper than that. You need people thinking about your case....you need "the right person" that will point you in the right direction just like what happened to Jackie....and then, there are no quick answers for advanced scoliosis sufferers like us.

I have a feeling that I'm next. Things are going downhill and I am having more bizarre Neuro, CNS related symptoms these days. Stabs and zingers! Right now, I am barely walking, my hip has been killing me for the last few days. Chances are this will subside, come and go, along with other multiple symptoms. Sleeping has been difficult which is a killer. I am an orthopedic disaster....I'm not going to move forward yet until something really becomes a problem. How tough do we have to be? Pretty tough I guess...we get used to it. I do suspect its my spinal cord....and not looking for miracles. You know Medrol packs are tough on the hips. Steroids are tough on the body. Myleogram dyes, advanced DDD, and spinal stenosis are all hard on the cord. Vertebral rotation from scoliosis is also not a helpful thing when thinking about the spinal cord. These things are never easy, and hard to figure out....

I don't blame anyone....Everyone has done their best. I have seen this before with terminal disease where there are no answers. My brothers situation has NO answers at all. Most of the people around me have had no answers....ALS, Kleinfelters, Phocomelia,Terminal Cancer.

Been watching a ton of Yuja Wang videos trying to divert my mind.....Her interpretation while wandering off the classic's is just brilliant. How about a polka?
https://www.youtube.com/watch?v=abdUjh6yo8E

Can I say, Hang in there one more time? Sometimes, it takes on a new meaning...

Ed

[Ldwc]

Pam, there is going to be someone.....

For Nashville, you could talk to Brett Babat. I mentioned him before, because I know his father.
https://www.nashvilleneurosurgery.co...rett-babat-md/

He went to Yale and Brown....He does complex revision and deformity surgeries

Ed

Hi Ed, You seem to know a lot about this whole process. Can you recommend anyone in Charlotte, NC to remove iliac screws?

[titaniumed]

Lisa

Not Charlotte, but if I needed spine work done in North Carolina, Dr Hey would be a surgeon I would want to talk to.
https://heyclinic.com/

Dr Hey's You Tube channel
https://www.youtube.com/user/TheHeyC...t=dd&flow=grid

If Dr Lenke was your surgeon, you really should let him know what is going on at some point. I think its really important to inform our surgeons when there is a problem. It does help them with the disease. None of this stuff is easy since the body is so complicated.

In the thoracic, the screw heads can present some discomfort and I felt this. When I did my shoulder rebuild surgery, (10 months post) the arm surgeon ordered physical therapy right away since he didn't want the shoulder to freeze up. The arm bike was used to pedal with my arms and it toughened up the thoracic area and sure did help with my spine and continued scoliosis surgery recovery. I don't know if you have done any physical therapy but at 18 months post you are more than fine to enter a therapy program....movement is something we have to do. We are almost like most sharks in this regard.

I don't know what kind of pain you are in, one thing that's extremely important is your exact "description of pain". These surgeons will want to know exactly what is going on, and they are pretty darn good at knowing what is happening. There is always going to be something that's going to happen after what we go through, pain or lingering pain is one thing we have to be prepared for. My full recovery took me 2 years...and I still get the bear traps and the lumbar planks every once in a while. Its something that really doesn't bother me much anymore and I lay down if it happens. My neck is a problem that's for sure, but I am not running into surgery.

Lifelong scoliosis sure does involve a lot of waiting. The whole gamut from being a kid with scoliosis to senior scoliosis.

Send me a PM through the system and I would be more than happy to talk with you about things on the phone. I am retired now, so timing really doesn't matter much.

Ed

[Ldwc]

Lisa

Not Charlotte, but if I needed spine work done in North Carolina, Dr Hey would be a surgeon I would want to talk to.
https://heyclinic.com/

Dr Hey's You Tube channel
https://www.youtube.com/user/TheHeyC...t=dd&flow=grid

If Dr Lenke was your surgeon, you really should let him know what is going on at some point. I think its really important to inform our surgeons when there is a problem. It does help them with the disease. None of this stuff is easy since the body is so complicated.

In the thoracic, the screw heads can present some discomfort and I felt this. When I did my shoulder rebuild surgery, (10 months post) the arm surgeon ordered physical therapy right away since he didn't want the shoulder to freeze up. The arm bike was used to pedal with my arms and it toughened up the thoracic area and sure did help with my spine and continued scoliosis surgery recovery. I don't know if you have done any physical therapy but at 18 months post you are more than fine to enter a therapy program....movement is something we have to do. We are almost like most sharks in this regard.

I don't know what kind of pain you are in, one thing that's extremely important is your exact "description of pain". These surgeons will want to know exactly what is going on, and they are pretty darn good at knowing what is happening. There is always going to be something that's going to happen after what we go through, pain or lingering pain is one thing we have to be prepared for. My full recovery took me 2 years...and I still get the bear traps and the lumbar planks every once in a while. Its something that really doesn't bother me much anymore and I lay down if it happens. My neck is a problem that's for sure, but I am not running into surgery.

Lifelong scoliosis sure does involve a lot of waiting. The whole gamut from being a kid with scoliosis to senior scoliosis.

Send me a PM through the system and I would be more than happy to talk with you about things on the phone. I am retired now, so timing really doesn't matter much.

Ed

Hi Ed,

Yes, Dr. Lenke was my surgeon and I have reached out to him to let him know but nothing has been determined yet. I have been in PT for 15 months now with very little, if any, relief. I am also having muscle issues and would love to chat with you concerning you issue there as well. The SI area is causing me extreme pain and the injections only last about 3 weeks. The more I exercise the more pain I am in.

Being that I am new to this forum, I am not sure how to dm you. If you can let me know, I would love to call you.

Thanks, Ed. I truly appreciate your help, more than you realize.

Lisa

[titaniumed]

Lisa

I sent you a PM (Private mail) It will show up in your e-mail. It has my phone #

Ed