Re-do surgery : Questions

[Christopher]

I am trying to determine if my SIJD is so bad that I will need surgery for it. Then there is the question of who to go to for the surgery. Do you know if Dr. Hibner does reconstruction of the missing ligaments for TG surgery re-do patients?  If so, is there any way to fast track oneself into Hibner's O.R.?

The other potential surgery us SI joint fixation or fusion. 

So I have to answer these questions:
1) is my pelvis so compromised that it is impossible to get me out of a bedridden state without surgery?

By compromised, I mean, is my sacrum so out of alignment that it will not go back into proper alignment without surgery

2). If the answer to #1 above is NO, what do I need to do to GET my sacrum realigned?

3) if the answer to #1above is yes, who do I go to for surgery?

A. Dr. Hibner  (does he rebuild the sacrituberous and sacrospinous ligaments in his redo surgeries)
B. Dr. Conway (does he do redo surgeries and can he rebuild the sacrituberous and sacrospinous ligaments)
C. SI joint fusion or fixation in Gainesville, GA. 

Any suggestions on how to proceed?

Thanks much. 

Christopher 

[nyt]

I can answers your questions Dr. Hibner. He leaves the sacrospinous ligament cut and does not repair it. More recently he has been repairing patients own sacrotuberous ligaments but in the past has used cadaver tissue. I would imagine that if he can't repair your own ST ligament he would use cadaver tissue for the repair. I am not aware of any PN surgeon who repairs the SS ligament.

Have you've been on the Facebook forum regarding the SIJD surgery? They are pretty helpful with information. I don't follow that group on a regular basis because I don't have SIJD.

[Karyn]

Hi Chris,
Please correct me if I'm wrong, but it appears you're asking if Dr. Conway & Dr. Hibner do ligament reconstructions. If that's your question, the answer is no.

Any suggestions on how to proceed?

I suggest you contact Vicki Sims in Gainsville for an evaluation. What types of treatments have you tried so far for the SIJD?
Best regards,
Karyn

[Christopher]

Thanks!!  Yeah, I'm not sure if that is what I was asking--if they did ligament repair--but it's good to know the answer!!

Thanks Karyn!  I am aware of Vicki sims and I have written her an email. 

SIJD treatments I have tried:
PT with two pelvic specialists 
Prolotherapy - 3 sessions
Intensive chiropractic care over the last month with a wizard of an SOT chiropractor. 

And I am still bedridden, with a badly misaligned sacrum the likely cause. It is pulling on the sacral nerve roots and causing intense pain. Not to mention that L5and L3 have started subluxating. Not fun.

Chris

[Karyn]

Intensive chiropractic care over the last month with a wizard of an SOT chiropractor

What's an SOT chiropractor?
I wish you the best with Vicki. Please let us know how you make out.

[nyt]

Hi Chris, I see I misunderstood your question. I thought you were asking about ligament repair after pudendal surgery. Sorry about that. Good luck with Vicki.

[Faith]

Christopher it sounds like you have had a lot of treatment for your SIJD. I recently visited Vicki Sims (and plan to write an update soon) and I was hopeful after our inital visit, but a bit disappointed by the end of the week of treatment. She really follows her book, "The Secret Cause of Low Back Pain: How to End your Suffering" which is about 80 pages. My cover looks different, but it may just be an updated version http://tinyurl.com/72m9uj3. There are 3 exercises she gives you and a pretty basic exercise/stretch routine to follow for 6 weeks. I bought her DVD "Understanding Sacroiliac Joint Pain" hoping I could do the corrections without paying to go see her, but she did many more corrections on the DVD than she did in person. She taught us one correction for the ilium, one for the sacrum, and one for the pubic symphysis. The only thing I really needed her to tell me was which side my sacrum was rotated, but it was my painful side, so really she did very little. The sacral correction needs to be done while sitting which is painful for us with PN and I seem to feel worse after I do the corrections and taping (which is on the dVD).

She seems to have a protocol that she follows no matter what and knows hardly anything about PN. We are complicated patients, not like an acute SIJD injury. I know she has helped many people, but I doubt I am going to be one of them. If after 6 weeks there is no improvement they often encourage people to have surgery (SI joint fusion/fixation) which is a big surgery and can cause further issues with the spine as the SI joint is designed to have slight movement. I think that surgery can be beneficial for those who have damage to the joint (i.e. arthritis or joint capsule tears), but many of us with PN the pain is really coming from laxity with the ligaments and I don't know that SI fiaxtion is the best way to fix that.

I would be happy to talk with you more about Vicki or SIJD in a PM. Have you had a positive diagnostic SI block? Where is your pain exactly?

[Karyn]

Hi Faith,
Thanks very much for your input. I have to admit ... I'm a bit disappointed. Gosh - How are YOU feeling emotionally? Ya know; I've been doing a lot of reading about SIJD, such as yourself. I just don't get it! According to most of what I've read, this isn't a difficult problem to fix. First line of treatment is Chiropractor (been there/done that!), PT manual adjustments (been there/done that!) and various stretching exercises. Oh, I almost forgot about the Taping and the Diane Lee SIJ Belt. And I've been doing this for YEARS. What gives?

She seems to have a protocol that she follows no matter what and knows hardly anything about PN. We are complicated patients, not like an acute SIJD injury.

Is that the key? ACUTE injury???? Would you happen to know why the SIJ and SIL aren't imagable?

[Faith]

Thanks very much for your input. I have to admit ... I'm a bit disappointed. Gosh - How are YOU feeling emotionally?

Well, I'm pretty confused about what to do next Karyn. My symptoms are very debilitating, but they are not 100% SI joint or 100% PNE so what do I do? Now I feel like I just have to wait till I can get my Potter MRI in May. Then if everything is still unclear I'm considering a trip to Cornwall. Or maybe I need another SI or PN block, I just don't know.

Ya know; I've been doing a lot of reading about SIJD, such as yourself. I just don't get it! According to most of what I've read, this isn't a difficult problem to fix. First line of treatment is Chiropractor (been there/done that!), PT manual adjustments (been there/done that!) and various stretching exercises. Oh, I almost forgot about the Taping and the Diane Lee SIJ Belt. And I've been doing this for YEARS. What gives?

I think why this stuff hasn't worked for me is that I have chronically strained/stretched SI ligaments so nothing will hold my joint in place. The problem with this is there is nothing to really treat this other than SI joint fixation/fusion surgery and it isn't really fixing the real problem. A ligament graft/repair is what is needed, but no one does that. Some say prolotherapy treats this, but there is a lot of mixed information out there about prolo.

Is that the key? ACUTE injury???? Would you happen to know why the SIJ and SIL aren't imagable?

I think quite possible that is the issue for some of us who also have PN. Our condition is chronic and it is complicated. After years of pain and dysfunction it is much harder to get the joint back into alignment and get it to stay there. If the problem is SI joint dysfunction due to rotation of the sacrum/ilium or upslip, etc then those things cannot be seen on an MRI. If it is sacroilitis from arthritis that might be seen on an MRI. I don't really know if the ligaments are imagable. I am getting mixed info on this as well. Another possible source of pain is an SI joint capsule tear, but usually this would be seen on an SI injection when they inject the dye. If it leaks out of the capsule then there is likely a tear.

I cannot lie on my back. I thought this was coming from pain at the ST/SS ligament grip of the PN, but now I am not so sure. I have a "knobby", "crunchy" area running vertically alongside my sacrum (in what I think is the SI long ligament). One doctor I recently saw was really intrigued by this (as I have been for almost 2 years, but no one knows what it is) and he says it should imagable. I think it is likely that some of my SI ligaments tore when I had aggressive PT initially and that is generating a lot of my pain. If that is the case the best treatment would be an SI fixation, but I don't know that I want to go down that road. I'm hoping Dr. Potter can shed some light on this.

[Karyn]

I think why this stuff hasn't worked for me is that I have chronically strained/stretched SI ligaments so nothing will hold my joint in place. The problem with this is there is nothing to really treat this other than SI joint fixation/fusion surgery and it isn't really fixing the real problem. A ligament graft/repair is what is needed, but no one does that. Some say prolotherapy treats this, but there is a lot of mixed information out there about prolo.

I have a "knobby", "crunchy" area running vertically alongside my sacrum (in what I think is the SI long ligament). One doctor I recently saw was really intrigued by this (as I have been for almost 2 years, but no one knows what it is) and he says it should imagable. I think it is likely that some of my SI ligaments tore when I had aggressive PT initially and that is generating a lot of my pain. If that is the case the best treatment would be an SI fixation, but I don't know that I want to go down that road.

I understand what you're saying, Faith. I could've written the very same words myself. I'm also very concerned about chronic strain and tissue tearing. Personally, I'm very much opposed to injections into damaged ligaments and tendons. I'm going to a new Pain Clinic this coming Wednesday. I'll letcha know if I find out anything useful.