Well my new orthopedist that had thought he wanted to take out the pins decided that it probably would not give me the results I'm praying for. An SI joint injection reproduced the pain so definitively that they feel that more of my pain is coming from the joint and not the pins. With a failed fusion and incomplete bridging, in my mind, I am seeing pieces of bone that I know is what I feel everytime I take a step. The pins are a component though. SO it sounds like no one wants to help me even the pain management people. My family MD is prescribing longacting narcotics with breakthrough medication. I work about 6 hours a day and spend the rest of my life lying on the sofa or my bed. This sucks so bad I don't know what to do. It is so painful to move around so I just don't. I know this is not the way I want to live. I live and work at one of the finest medical schools in the southeast. The doctor I work for is a pediatric heart surgeon. He saves little babies lives with little conduits that look like cocktail straws or smaller. Yet, no one can fix ONE damn bone in my body. The new orthopedist says that the joint needs to be cleaned out and probably re-fused and no one around wants to attempt that.
My life is absolutely screwed.

[COLOR="red"]Hi[/CH


HI, Brenda, I'm new at this so don't know if I'm doing it rightl

I have something called Ehlers-Danlos Syndrome and have had 14 spine surgeries--the last in 2000 when they removed 5 previous fusions, did laminectomies of those spaces plus lams of 2 thoracic vertebrae, then put in 14 cadaver bone blocks and 14 pedicle screws and attached them to two titainum rods. It wasn't a perfect surgery (about 12 hours) but cut my pain by 1/2 or more and I did pretty well till 3 years ago when my hip joint became bad (also had knee repaired---ACL tear and removal of Bakers cyst). The hip bursa were injected on an almost routine basis and finally this surgeon felt she could remove and had done it with great results so ordered a scan--but I mentioned more back pain so a scan ordered for that. It didn't look right to the radiologist and so she wouldn't do hip surgery till the back isssue was solved. YOu can imagine the complications I present doctors,had many tests, saw orthos, neuros--finally went back to the man who did the BIG surgery and he diagnosed problem as a SI joint problem. HE doesn't do injections but has a colleague who does, but my internist husband felt we should go back to our area===600 mi E--and see if we can find a suurgeon who works on SI joints, which we did within 25 mi from us. He did more tests and lo and behold found the lowest lumbar space was a non-union AND I have TWO bad SI joints! Now, this sugeon will fuse both joints, along with the L4 vertebrae. I am relieved to hear that someone has had good results. How long has it been since your surgery and how was your recovery period? Having had 14 spine surgeries, I would think that I would tolerate the surgery okay. One never knows.... Do you notice more stiffness or not? At this pt I stiffen up and feel that I am losing my balance,which I hope will get better when the pain lessens---I hope (I have a lot of stinging pain) ANything you can tell me to help me understand this would be very much appreciated! I' hope to hear from you!

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]

Hi Jetty,
I hope you are feeling OK. Did you have your surgery yet? Not sure if I posted in the right place. I'm looking to find out who your si joint surgeon is. Please let me know.

Thanks!

Terra

I underwent my first SI jointn fursion at Emory University in Atlanta in 2006. I,like every one else had exhausted every kind of option there is/was. After realizing I has (or my insurance) had spent $30,000.00 on pain management which mostly consisted of SI joint, facet joint and some disc injectionj. Theren was never any improvement. When I asked the not so nice physician (I didn't see that side of him until I started asking about alternative treatments). So I researched the radiofrequency ablations as well as the surgical options. What scared me about the ablation was the anatomy of the nerves. A large bundle of nerves run through the SI joint and the doctor I spoke with was honest enought to say that it could not be positive that you were ablating the right nerve and the end results were real iffy.

By this time I was getting real desparate. I was getting where I couldn't do my job and the thought of going out on disability was terrifying. It seens like you have to almost hit bankruptcy before youcna get any help. So to make a long story short, I opted for what seemed like a very risky surgery but I didn't fell I had any options. I just wanted my life back. So in May of 2006, I drove to Atlanta from Charleston. The staff were very pleasant, but reall thy pleasantness ended there. This was my fourth back type surgery and the pain was like I never experienced. I was completely unable to walk for about three weeks. I faithfully followed the physical therapy protcol but could never build up any strength or stamina. I went through aqua therapy which did help with regaining some stamina. But then the pain started to return. I was convinced the pain was coming from the pins in the pelvis but no real test definitively could prove that. I did have an SI joint steroid injection which suggested haloing (A signof pin mobility) My orthopedist did a CT scan and it did not show any signs of mobility. Since I was getting worse and worse, I went to a second opiniond and he agreed thatc the pins showed haloing and a year after the fujsion, very little bone growth had occurred, so I wsa actually no better than I started off.
As you know there are very few MDs who treat SI joiny dysfunction but I was luchy that I liven a citywithamedical university who just happened to have an orthopedist whose research specialty was, you guess it, SI joint dysfunction.
He agreed, rather reluctantly to attempt salvage surgery with the understanding that this was hopefully for pain relief. I probably would never be mobile nor physically as well again. There was a chance I would come out worse,better orno difference. It has been one year nor this week. He told me it would take months to a year to get better. H was right.He pulled no punched when he warned me about how much pain would be involved during recovery. He did NOT soften or talk me into this in any way.If anything he made it sound worse. So now ayear later. I still walk with a cane,probably always will. There are still some real bad days that I use the walker still. The pain is finally under control, but I still take long acting narcotics and somee brekthrough meds.I am far less depressed becauseI am finally starting to get out anad have a little fun. I takes a LOT OF MIND OVER MATTER. iF yOU ASKED ME IF WOULD GO THROUHG THIS LONG ARDUOUS EXPERIENCENE AGAIN, I
WOULD HAVE TO SAY YES JUST BECAUSE FINALLY after 2 years, the pain is controlled well enough most of the time that I have some sort of life again. I would be happy to talk to anyone contemplating this complex sugery.

Hi, I hope you don't mind me replying, my name's Charlotte and I was diagnosed with Sacroiliac Joint Dysfunction a few months ago, I'm only seventeen years old so it's really difficult to keep up a part time job, and college and applying for uni this year whilst getting on with my ack problem. It's apparently quite rare for someone to get it so young. I really struggle with it and was in hospital for three weeks, they told me it was all in my head and they had done EVERY hospital check, but referred me to the pain clinic and within half an hour I was diagnosed, it was really hard for me, being a teenager and taking tramadol like their smarties is horrilble, it really gets me down and even though I try joke about it it makes me want to cry as I can't do normal things like every other teenager on the planet. I had my injections 2 days ago and they have stopped the backache, but i'm really worried because my stomach has bloated and become rock hard and I have a constant ache in it. I'm really struggling and will ring the hospital tomorrow if it doesn't calm down. I was so happy to find this forum as no-one I know has this disease and so it makes me feel like I'm not alone!!!

Hi BellatrixBlack,
I know it's over a year since your post but I am hoping you are still checking this forum as I would like to know how you're getting on because your story is similar to mine.
I have suffered with SI joint dysfunction since I was little due to a heavy handed midwife pushing my hip the wromg way when she checked them just hours after my birth.
I couldn't do forward rolls, jump a hurdle etc when at Primary School and like you I was told it was in my head. Luckily my parents pushed the doctors to investigate further because they believed me although when I was 18 I was told to come back when I was 50 for a hip replacement!
I managed with anti-inflammatories and physio for many years until in 2002 my L5 disc became prolapsed (because of the SI joint issues) and I then couldn't walk at all because of the pressure it put on my SI joint.
My hip feels like it doesn't fit properly, abit like if you took the leg off a barbie doll and out it back on sideways...it wouldn't fit and that's how my hip/SI joint has felt for as long as I can remember.
I finally was diagnosed with SI joint dysfunction in 2003 but I was also told had the doctors got it right when I was 18 they could have manipulated it back but due to the disc problems I now have, if they tried to manipulate it there is a high chance my spine will react by unwinding and I will end up in a wheelchair!
I've had injections and tests but I've not found any that gave good enough pain relief.
I now have Fibromyalgia, IBS and a sleep condition (similar to narcolepsy) and a swollen foot all of which are side effects of taking strong pain killers for many years.
I delayed taking morphine for 4 years but I now take 38 tablets a day including Oxycodone.
The Oxycodone does help more but every morning I struggle to get out of bed due to the pain and I struggle with work and with everythng I do. I use a stick when walking and an SI Joint belt but I try not to use the belt too much because I don't want to become reliant on it.
I would love to have SI Joint Fusion Surgery but I've read so many dufferent stories of people still having pain after surgery and when I was first diagnosed by GP told me to be careful of anyone saying they can cure me and avoid surgery unlessy could guarantee I would be cured.
i would love to hear from you or anyone else with SI Joint Dysfunction who has had similar or different experiences to me and if anyone has had surgery and it's been successful, please let me know.
Thanks
Rach

I have heard by many that the surgery doesn't help if it does it doesnt help much. I had a belt but save yr money they move and come undone and uncomfortable. I have had prolo therapy and it helps but for me I found no perminate relief. I have done all the exercises given to me with some relief and some improvement but nothing seems to be perminate or repairs me to pre injury. I have done my research and there is a lady in America named vicki sims she is the leading person experienced in sij disfunction, currently there is noone in Australia (if you're in america your lucky)

I am a new member. Thank you all so much for your informative posts and a very informative article.

Years ago in my 20's I was T-boned which resulted in a bad whiplash and left SI joint dysfunction. Then 8 years ago, I was in my little car and was rear ended by a big truck, which totally flared up my symptoms.

It does not take much activity or carrying of loads that are too heavy for my SI joint to go out. I end up going weekly to physio, which helps short term but doesn't last more than a few days.

When my SI joint goes out, I do get pain right at the joint. But it feels like my entire spine gets twisted like an old dish rag. I feel absolutely exhausted, have insomnia, bowel and bladder changes, and I get massive headaches which just do me in. I then feel cognitively compromised and have a hard time thinking straight.

Does anyone else have symptoms like these?

I also wonder what has been the most helpful treatment for people. For those of you who have had surgery, was it worth it, and did it help?

Thanks so much in advance.

Island Mist Woman