SI joint laxity

[HerMajesty]

As far as I know most or all of the companies that create hardware to do S-I fusion, create a product that can be pulled out again if the fusion does not help. But of course that is another surgery.

[Karyn]

Hi Faith,
I have to agree with everything HM said. You may want to send Paulette a PM. She had her SIJ fused to her sacrum.
Wishing you the best and sending hugs your way!
Karyn

[Faith]

Hi Faith,

I While SI fusion surgery might help some people with SI pain, I have never heard of one single person with pudendal neuropathy, who had the pudendal neuropathy fixed through SI fusion. In fact I have heard of some individuals who exacerbated or initiated a case of pudendal neuropathy through fusion. Of course I don't know everybody out there. Have YOU heard of anybody whose PN pain was cured by SI fusion? Or is there anyone reading this whose pudendal nerve was helped through SI fusion?
Just something to think about, because I feel strongly that if you have made the decision to have a surgery, and you are considering which to have, decompression is the way to go.

Yeah, I don't know of anyone who has had PN symptoms that was helped by an SI Fusion either, but I guess my question is are my symptoms truly coming from the PN or are they all coming from SIJ laxity? I think probably not, but I do not want to have decompression surgery if it is not going to fix some of my pain. I too am more scared of an SI fusion than of PN decompression.

It is believed that my elbow joint laxity is what is causing my symptoms of cubital tunnel syndrome so is it not possible that if my SI laxity was fixed my PN symptoms might diminish? As the ST ligmanet is probably constantly moving and impinging the PN nerve also the piriformis is tight possibly causing some impingement there. So if the SI joint was fused then the ligaments wouldn't be constantly impinging on the PN and the piriformis would be able to stop working so hard and stop impinging the PN. Just trying to understand better what exactly is happening.

[HerMajesty]

Hi Faith,
This is my personal impression of what is going on.
You have SOME predisposition to joint laxity, as shown by elbow hyperextension. You do not to the best of my knowledge have an all-out connective tissue disorder, such as could be demonstrated by the ability to bend the thumb backwards painlessly until it touches the wrist. So what you have is not really a hypermobility syndrome, it is a predisposition to injury. During pregnancy that predisposition would be greater because the hormones of pregnancy cause further joint laxity to allow for childbirth. At some point either due to the weight of the baby in pregnancy or during childbirth itself, you experienced a pelvic joint injury. This was then exacerbated by misguided applications of high velocity manipulation by Manual Therapists. If your S-I is currently lax, it is probably in compensation for a pelvic joint injury which is causing mechanical entrapment of the pudendal nerve. I do believe the whole mess could be corrected non-surgically by competent Manual Therapy, but quite understandably you have lost faith in the profession and don't want anyone else to touch you. So as far as surgical options:
S-I fusion: Your misaligned pelvis is causing pudendal entrapment. Fusing the joints into place does not change this, it just renders the dysfunctional pattern uncorrectable by manual means. My bet is you would still need pudendal decompression afterwards. I am aware of the claims that the pelvis can be manually aligned during surgery so that it is fused in the proper position. I would advise caution / healthy skepticism.
Decompression: As with Violet's success story, a decompression is going to dissect the pudendal nerve out of whatever mess is in your pelvis. The joint dysfunction might remain, but the nerve will be freed. I doubt very strongly that a hypermobile S-I will cause a re-entrapment. You have to realize, even a lax S-I joint does not move much. Normal movement within the S-I joint itself is limited to about 2mm. It is not a very mobile joint at all. If there is some additional range of motion in your S-I, it still is not moving radically. I think a decompression would free up you pudendal nerve and solve the immediate problem for you. My concern is that if there is hypermobility in the S-I, it is almost certainly due to some kind of joint dysfunction elsewhere in the pelvis: could be a compensation for a hypomobility elsewhere, or could be pubic symphysis diastasis caused by childbirth, but you will still have some abnormal tension within the pelvic structures. Some people, like Violet or like anyone who has their S-T ligament severed and unrepaired during a successful decompression surgery, do fine with that. Some develop other PFD related issues such as interstitial cystitis. That's why I would like to see you get the pelvic instability resolved...but barring that, a decompression surgery would logically be the best thing to salvage your pudendal nerve.
I hope this made sense and was helpful, I tried

[Lernica]

Er -- just what I was gonna say, but (as usual) HM beat me to it (NOT!) HM, you continue to amaze!

Faith, I hope HM's analysis will be helpful to you.

[Faith]

Thanks HM for a thorough response!

I am not 100% against getting competent manual therapy, but am just not sure it's going to help. Other than Jerry Hesch (I just don't think I can make another trip out west financially right now) are you familiar with Vicki Sims, Pt in Atlanta? http://www.sidysfunction.com ? Have thought about seeing her. I would love to fix this without surgery, but after seeing so many PT's who are knowledgeable of SIJD and correcting me with no effect I don't know how it is going to fix my problem. I also saw one of the best physiatrists in the country for SIJD and she couldn't help me. How can a "competent" manual therapist help me if the minute I am "corrected" I come back out of alignment? Just trying to understand. I don't think I have any pubic symphesis dysfunction as I have no pain there or in my groin (I do "reset" myself there occasionally, but it doen't help). I've also been treated for a sacral torsion (which GREATLY flared my pain)...so where else could the dysfunction be? I just don't want to pay several thousand dollars to travel to see a good manual therapist only for it not to work and then turn around and have to have decompression. I do totally agree that there has to be some dysfunction though as I have such widespread muscle pains. I guess I am just hoping that if my PN is freeed surgically then I could do traditional stabilization exercises to help my SIJ. I don't plan on having more kids. The other thing that confuses me is why did I have symptoms of PN (vulvar burning) before my pregnancy (right around conception actually), but the SIJ dysfunction symptoms didn't start until the high velocity manipualtion? I have talked to so many SIJD pts on other forums and none of them have pelvic floor pain like me. Also if it is only a "mechanical" entrapement then why did the botox help? Instead I am more spasmed!

Interestingly I talked to Hibner's fellow and asked if they had ever operated and a pt wasn't entrapped and he said, yes (they didn't have scar tissue), but the freeing of the nerve around the SS ligmaent seemed to be enough to help their symptoms. My thoughts are they probably had SIJD....what do you think?

[HerMajesty]

Hi Faith,

I agree that group of patients that Hibner's fellow referred to, probably did have SIJD and I do agree that if your nerve is entrapped solely due to SIJD, Dr. Hibner could most likely free it surgically.
I am not personally familiar with a Manual Therapy method under than the Hesch Method which can definitely pinpoint a pattern of joint dysfunction and correct it quickly, gently and painlessly. There might be such a thing, I am just not aware of it. Fortunately that kind of joint work is about to become much more accessible. Jerry Hesch will be teaching a post-conference lab for the International Pelvic Pain Society Fall Conference this October, which instead of focusing on his basic work like his seminars do, will specifically focus on patterns of joint dysfunction which are common in people with severe pelvic pain syndromes. I know it was capped at 50 practitioners and it is full; I have no information on who is registered but I know that this is the conference a lot ofthe "big names" in PNE / pelvic pain attend. I would assume it will disseminate information about complex patterns of pelvic dysfunction closer to you, at least as close as Chicago.
If you go to Vicki Sims's website and click on "out of town packages", you will see the protocol she would offer you. By reputation I have heard that if her 6 week protocol fails to fix you, she in many cases will recommend SI fusion by one particular surgeon, and then will charge you a rather steep additional fee to be in the O.R. and manually align your pelvis before it is fused. Honestly, I am uncomfortable giving an evaluation of this process on a public forum. I think you can use your own discernment.
I had the same issue as you before I saw jerry Hesch, where my PT kept "correcting" my S-I and it kept "falling out" again. The underlying issue is "regional interdependence". It is the idea that SOMEPLACE there is a root cause, but just to mess you up there are also 3 or 4 other dysfunctions that are simply in compensation for the root cause. If you correct something and it keeps coming back, you are not correcting the part that is driving the system. Simplest possible example: if your pelvis is twisted left, you are not going to walk diagonally left. Your body wants to keep you moving forward and keep your head level. So someplace further up, there is a reflexive twist to the right. Usually that's in your neck. So then if you start getting neck pain and headaches, you can go to a Chiropractor, and he will tell you quite correctly that the vertebrae in your neck are twisted, and he will fix it...today and twice a week for the rest of your life, unless you get that pelvis corrected. The same forces are at work within the pelvis itself. hypermobilities generally do not correct well because they are not driving the system. They tend to be compensations, to allow free movement and effective gait in spite of a HYPOmobility elsewhere. I mentioned pubic symphyseal diastasis only because it is one of the few instances in which a primary problem is a hypermobility, and a hypermobile symphysis pubis will logically lead to a hypermobile S-I. But really I think if you had pubic symphyseal diastasis, Loretta or another Manual Therapist would have picked up on it. The challenge to most Manual Therapists is not in finding hypermobilities, it is in finding and fixing HYPOmobilities, and letting the hyermobilities take care of themselves as a result.
I sympathize with your frustration in trying to understand what a pelvis can do...how many ways can a pelvis move, right? Actually it can do a surprising lot. Jerry Hesch teaches a "Basic and Intermediate" seminar which teaches over a dozen different possible pelvic joint dysfunctions, which tend to group together so that what is actually being taught is the most common pattern and its component parts, the second most common pattern and its component parts, plus sacral torsions. I don't have a handy list of the basic patterns (things like upslip ilium, downslip ilium, pelvic side glide, etc)...but I CAN list all the patterns that appear on his advanced instructional video created as a follow up to those who took the basic course, because they are on his website so I just need to cut & paste. The advanced patterns are:
Upslip with Anterior Ilium
Upslip with Posterior Ilium
Upslip with Wider A-P Hemipelvis Permutation
Sacrum in Posterior Glide
Anterior Glide Fixation of Sacrum
Osteopathic Inflare & Outflare (Type II)
Oblique Upslip*& Oblique Downslip
Posterior Glide Fixation of Ilium
Posterior Ilium Type II
Lower Windswept Pelvic Fixation (Bilateral) & Side Bent Coccyx (a pattern of 6 sequential dysfunctions)
Unilateral Ischial and Pubic Dysfunction
Posterior Glide Fixation of Symphysis Pubis Fibrocartilage
Anterior Glide of Pubic Symphysis Fibrocartilage
Inferior Glide Fixation of Symphysis Pubis Fibrocartilage
Pubic Symphysis Dysfunction: Traditional Treatment
Pubic Symphyseal Diastasis
Coccygeal Dysfunction: Side Bent, Fracture with Posterior Dislocation, Forward Bent, Backward Bent
So like I said, add about a dozen more patterns to that and you have most of what the pelvis can do. That's why it's a confusing field and there are a lot of different approaches and outcomes.
I am not trying to be a commercial for Jerry Hesch. If you were not aware, I don't work with him anymore (will be helping him at some events such as the upcoming IPPS Conference, but I am not an employee of his nor an officer of his company. I am, very happily, a housewife at the moment). I chimed in because I am afraid you will get an S-I fusion. I listed all this stuff about Hesch Method because I do sense a frustration in you that you cannot understand what your pelvis can possibly be doing aside from just being too lax. It can in fact be doing lots of things which is why S-I fusion is often a misguided course of action. I think a decompression surgery is a reasonable option for you, I am not knocking it. The S-I fusion is what I think could potentially cause more damage.

[Christopher]

I have already had pudendal nerve release surgery and 8 heads later have developed a horrific case of SI joint dysfunction. It is so bad I am bedridden with it. 

Don't know what to do.  I believe that the instability may be bad enough that it cannot be conservatively corrected. 

Should I consider SI fixation/fusion?  I certainly don't WANT that surgery.  But u also don't want to be bedridden for the rest of my life either. 

I still have PN, too. In the form of bad rectal pain. 

Ideas. Suggestions. Comments.  Prayers?

Christopher 

Sent from my iPhone

[paulette]

I am one of those people who had a SI fusion before I had pudendal nerve decompression surgery. It did, in fact, make the PN pain worse, but keep in mind I also have my spine fused to my sacrum, so everything is my pelvis is clamped down pretty tight. Having said that, I do not regret having the SI joint fused; just the order in which it was done. I had so much pain in the SI joint, I would get up in the morning and stand beside my bed and either cry or scream, the pain was so bad. Now I mainly struggle with piriformis pain, which can also be pretty bad, but not as bad as having both.

Vicki Sims has made great strides in treating SIJD. And yes, she refers patients she cannot help to Dr. Weiss. One of the biggest advantages of having the team of Vicki and Dr. Weiss is that she does align the pelvis right before surgery. I know patients who have not been aligned and those who have been aligned. The ones who have been aligned seem to fare much better. What she charges to be in the OR really isn't exorbitant. I think the quote I received was around $400.00. That is out of pocket, because insurance won't cover it.

As far as having a SI fusion reversed, that is only possible if you have the i-fuse technique, which uses titanium implants. And even then, it must be done within the first three months of surgery, or the fusion becomes too solid to remove the implants. I know a woman from Amsterdam who traveled across the pond to have Dr. Weiss remove the implants when she was close to a year to being fused. The reason she made this decision was because she was not aligned before surgery in Germany and was in terrible pain. Dr. Weiss had to chisel the implants out, and then do a traditional fusion.

So having said all this, I agree it is much better to have the PN surgery before the SI fusion. But if PT and prolotherapy don't help, don't be afraid of the SI fusion, especially the i-fuse technique. It is minimally invasive and usually not difficult to recover from. There comes a point when the abnormal position of the SI joint causes arthritis in the joint itself. That is what happened to me, and the pain is impossible to live with.

[Karyn]

Hi Paulette,
Would you happen to know what Vicki Sims does differently than other PT's? I've been getting SIJD treatments for the last 3 years (off and on) from PT and Chiropractors with no lasting effect. I really don't know for sure if my SIJ is lax. Feels more like it's "stuck". Even tried Diane Lee's SIJ Belt: The Compressor.
Has anyone gotten cured from injections, alone?