Hi Sally, Just want you to know you are not alone. No ne quite understands how debilitating this SI Joint Dysfunction is....not even people with disc pain. I WISH I had a herniated disc that could be "fixed" with a simple, well-known surgery. I am tying to heal without fixation or fusion surgery, but I am certainly not counting it out. It has been a year and half of sheer hell for me. I have been undergoing prolotherapy treatments which do help: (it's prolotherapy.org) . but I belive my pelvis is twisted pretty badly out of place and keeps losing its correct positioning. Don't give up. There is a doctor out there who will help you. Please email me if you ever feel like chatting. I would be happy to let you in on all my "research" findings. I am currently wearing an SI belt that is great: it's .
I definitely feel a lot more stable with it. Don't give up. I have felt like throwing the towel in more than a few times so I know how you feel. I know I will never be the same as I was, but I do have hope for a "somewhat" normal life again.

Thanks for the support and you are absolutely right. People don't understand that it isn't just a bad back. Right now I am still unsure what to do. The fusion failed and it appears the pins are moving. I really don't plan on going back to Atlanta for a repeat however when it gets real bad who knows. My family MD is angry that I won't go back to Atlanta. I told him the worse case scenario is that I'll show up at ER door and the orthopedist here will have to remove these damn pins. Started a new long acting pain med yesterday, Opana ER. Seems to be working.

Sally, I have heard that the Dr in Atlanta that does the SI Fuisions in Atlanta only uses one screw to hold them in place. There needs to be at least 2 screws to give it stability from what I have read.

I'm so very sorry that you went through all the pain of surgery and it didn't work and now facing surgery to have the pins removed.

He actually put in four screws. Two in each side. It really was my understanding that it was the norm to put the four in for a true pelvic fixation however I wasn't sure because I probably have some degree of SI joint dysfunction on the right as well though not as "flail" as they said on the left. Whatever, I'm still in a quandary, Would you go back to the same MD if the first didn't work. Its a 6 hour drive to Atlanta and add hotel rooms as well. I think it took a year for me to recover and then only had maybe four months of feeling good and now I'm worse than before!! (What a runon sentence.)

I was about to give up on any info here,until I read your posts, We seem to have had the same surgerys. I am going for my third, I think, still not sure after reading so many horror stories but I imagine anything is better than what i have now. Thank you for posting such helpful information. I will pray for you Anglwing

Hi Sally,
I think it might be wise to consult with DR. Lippitt. He is the surgeon who really pioneered this surgery AND trained Dr. Amaral. He is in his 70's and retired from surgery, but he still gives consults. He works in the Body Mechanics PT office right next to Dr. Amaral's office. I flew there frm Pennsylvania as I am so desperate. I did not realize that Dr. Lippit was still giving consults, so I missed out on meeting him. There is a weird set up at those offices. Apparantly there is some drama between Lippitt and Amaral. Wen you mention either of their names to the staff at their respective offices, they give a word of disapproval. I picked up on this immediately and asked why? They said that Lippitt used to use the Body Mechanics PT staff to allign the joint just prior to surgery, but Amaral chooses to do it himself (or maybe not at all). Lippitt is the godfather of this surgery and maybe he can advise you best. He may tell you to go back to Amaral and honestly, if I am in as bad pain as you (which sounds like I am I spend most of my day in bed and can not work), I would go back to Amaral to get fixed. At least meeting with Lippitt can give you an expert 2nd opinion and you can bring that with you to see Amaral. I am sorry you have to go through this. I am sorry for myself too. I fear that the surgery will be botched and I will be worse off, but I am beginning to think that is not possible. If I do get the surgery, I will likely use Amaral too since he is an "expert" and most ortho surgeons simply do not have enough of these surgeries under their belt for me to feel comfortable going with them. I am not crazy about Amaral....he was about 1 hour late to my consult even though I flew in from PA and had to fly back out the same day! He blamed his "girls" for not telling him. Well, I let that slide, but then I said something about "needing surgery" and he says to me "no one NEEDS surgery...it's not like you have cancer and are going to die". I looked him straight in the eye and told him I am referring to QUALITY of life and he just interrupted me and spoke over me. Very arrogant. He also told me the surgery only has a 70% success rate. Lippitt used to claim 80-85% (just look at the website). Maybe the percentage of success has fallen off since Amaral took over?? Also, if you go on the testimonials on the website there are all these old letters thanking Lippitt for "giving me my life back". Not one recent letter to Amaral. That scares me. Lippitt retied just a few years ago. I wish I had not missed his boat.

I called the Gainesville GA PT office to make a phone consultation appointment with Vicki Sims (I want to ask her about her expereince with Doppler imaging since no standard imaging shows torn ligaments in the SI region). I was informed by the woman Claudia who made my appointment that Dr. Lippitt is assisting in surgery with a Dr. Weiss in Gainesville. I just about cried tears of relief/happiness. There is another surgeon out there who is an expert in SI surgery AND he is in the OR with Dr. Lippitt's assistance. I am giving prolotherapy a few more months and then flying out get the surgery.
Sally, maybe this is the answer to our prayers!

Wow, I'm glad I found you all. I've been thinking that maybe my "butt" pain was SI and after listening to your symtoms, makes me think even more so. I'm having an injection on Wednesday. Any thoughts regarding this? Also, I'm wondering what stretching exercises to do and which ones to avoid? I've been searching the internet but found conflicting exercises.
It really hurts to sit for long & since this pain flared up 5 or 6 weeks ago, I've spent most of my time laying down. I'm thinking maybe I should be stretching out my muscles.
I really feel for you all. This pain is awful.
Linmarie

Hello,

I'm new--found this site "by accident!" (?)

I am scheduled for a fusion of my SI joints the end of this mo. (about 2 weeks). It' s interesting to see the posts by you people.

I'm going at it "by the back door." Can't go into it now but I am a recipient of
multiple spinal fusions---last a redo of entire lumbar spine 8 years ago. Pain returned 3 years ago after a heft fall down a dark stair landing with hand pointed into the abyss and not touchintg 6 steps but landing on both knees!
WOW.

Having had so many surgeries and being older, I thought my pain was due to past work, and my hyperelastic problems. I put up with it till pain ran down both legs and getting electrical shocks in one leg. The odyssey was long as I am so complicated now. After many tests and seeing mystified drs., disinterested MD's, and finally finding one that is a digger "of the truth."All is now verified. It turns out that one vertebae (of 14 fused) Is a 'non-union' and needs re-fusion--PLUS I have 2 inflamed SI joints so will have it all taken care of at once. I've had chronic pain for over 32 years but function quite well till now. Being in a family of long liv-ers. I though I have to continue to fight. I decided that if I made it through so many times before, I can handle this, too!

My retired MD husband and I did much research, read pros and cons and decided this was the most permanent chance for a recovery as shots poop out, rhyzotomies can work but also may need to be re-done in a couple years as well. The tricky thing with the latter is to "disengage"(cut/burn) only the sensory nerves and not motor nerves which means legs won't work too well!
So, one has to weigh if the surgery (permanent but 6 mos recovery) or other modes to help is what you wish to try. I've lost so many years by having my spine treated conservatively--to the point I was constantly in surgery and braces. I need to get on with my life and enjoy. (One time in my life I had one fusion each year for 6 years due to a couple "boo-boos" by nationally competent men. Much life doing nothing but trying to recover!

It behooves those who are contemplating SI joint surgery that they have their lower spine well-studied to see if any lumbar disc area is feeding into it--as then one might have only partial help--while there may be something else lurking. YOu may wish to talk to your doctor about this!

Cheers to any and all who are our "joint brethren!" Jetty

Hi Jetty,
My name is Terra and I have been in such pain from both of my si joints. I'm struggling to find a doctor who can help me. Can you tell me who will be doing your surgery? I really am desperate to find some help.

Thanks!


Take good care!

Terra




QUOTE=Jetty;315370]Hello,

I'm new--found this site "by accident!" (?)

I am scheduled for a fusion of my SI joints the end of this mo. (about 2 weeks). It' s interesting to see the posts by you people.

I'm going at it "by the back door." Can't go into it now but I am a recipient of
multiple spinal fusions---last a redo of entire lumbar spine 8 years ago. Pain returned 3 years ago after a heft fall down a dark stair landing with hand pointed into the abyss and not touchintg 6 steps but landing on both knees!
WOW.

Having had so many surgeries and being older, I thought my pain was due to past work, and my hyperelastic problems. I put up with it till pain ran down both legs and getting electrical shocks in one leg. The odyssey was long as I am so complicated now. After many tests and seeing mystified drs., disinterested MD's, and finally finding one that is a digger "of the truth."All is now verified. It turns out that one vertebae (of 14 fused) Is a 'non-union' and needs re-fusion--PLUS I have 2 inflamed SI joints so will have it all taken care of at once. I've had chronic pain for over 32 years but function quite well till now. Being in a family of long liv-ers. I though I have to continue to fight. I decided that if I made it through so many times before, I can handle this, too!

My retired MD husband and I did much research, read pros and cons and decided this was the most permanent chance for a recovery as shots poop out, rhyzotomies can work but also may need to be re-done in a couple years as well. The tricky thing with the latter is to "disengage"(cut/burn) only the sensory nerves and not motor nerves which means legs won't work too well!
So, one has to weigh if the surgery (permanent but 6 mos recovery) or other modes to help is what you wish to try. I've lost so many years by having my spine treated conservatively--to the point I was constantly in surgery and braces. I need to get on with my life and enjoy. (One time in my life I had one fusion each year for 6 years due to a couple "boo-boos" by nationally competent men. Much life doing nothing but trying to recover!

It behooves those who are contemplating SI joint surgery that they have their lower spine well-studied to see if any lumbar disc area is feeding into it--as then one might have only partial help--while there may be something else lurking. YOu may wish to talk to your doctor about this!

Cheers to any and all who are our "joint brethren!" Jetty[/QUOTE]