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Hi Experts,

I have a severe form of SIJD, and have tried every known medical treatment that is generally used for cases like mine. My last treatment a Radio Frequency Ablation cause the chronic pain I had to go from 4 to 7 and rarely 9 on really bad days. I was able to ambulate using a cane, and a donated wheelchair where I knew I would be out for an extended time.

I know what caused my SIJD, it is it took over twelve years of having every non surgical treatment known for sciatica, even though I presented with no spinal issues, and no disc problems. Initially I was having pain radiating from the SIJ and down to by big toe. I had always discribed as best I could and located the source of the pain, and plced my hand on it with every Dr I ever had treat me... On and off the problem has calmed enough for me to work, and get on with life...

In injury as I have told many before happened at work: I was pushing a 100# walk behind leaf blower machine. And, before I had time to react to it I was slammed into the corner edge of an upright tombestone I was clearing leaves around. The spot it turns out that I had been touching, and explaining as being deep inside my hip just to left of my spine was the pain source. It would be well over three months after the Oct 29, 1995 work accident before I would be given my first MRI's by the area's leading neurosurgeon, as I was 25 years old then and clueless as to who to see, who to ask, and so I worked with my PCP, and asked friends who they would recommend...

After all of that, I bring us back to my last treatment that left me I feel in my current state. However, I knew all the possible risks, I understood that the treatment was being done to help provide relief from the chronic pain I was in when I presented myself to this Dr. So I am not blaming him for it, as I choose the treatment and I have been very active as a patient in trying to resolve this. So for me the Dr. did his very best to help me, he certianly proved to be able to provide a great SIJ diagnosis shot before the RFA. And, he came highly recommended, is on the board of certified Dr. no marks against him... I just wanted to make sure that in today's world of being quick to blame, and wrongly file pointless civil cases... I am of the firm belief that if I know full well what I am getting into, and it works, I would not pay extra for that result. Just llike I would not expect someone to pay me if there best efforts in the area they are expert in do not work for me... Well thems are the breaks.

The RFA left me where I live in a nearly constant level 8 out of ten pain, unless I find the perfect position to be in in order to provide some form of releif where pain may reduce to around 7. If I stay in any one position for to long, this can vary I am back to the leve 8 pain. When I stand the pain shoots up to a 9 and will hold if it is a good day for a few minutes, before it ramps up to level ten.

Thankfully, I do not have pain that radiates anyplace for the most part. I would say maybe 5% of the time I might get a little radial pain as it spreads from the left SIJ. So the pain that leaves me as disabled as I am is contained to just that sight.

The pain feels like: A rapid stabbing with a nife, it is not my muscles doing this. I do call it in my layperson terms spikes. This is my normal pain, day to day. On bad days, nights, whenever, the pain feels somewhat different: Still with the rappid stabbing, just now with the added feeling of the nife being white hot, and it is not twisting really, however it feels as if somehow the stabbing stays as fresh and new feeling as when it start. These are still not involving my muscles, and in my layperson terms call this Spasming. I do not know medically yet what this would be actually called, as I know muscles typically spasm, I do not know what nerves do, yet.

I have now studied the SIJ area and the surrounding area so as to best discribe to Drs, PT, and others trying to help me what, where, and if possible in terms they can better grasp what I am going through.

At this time I have one treatment left out of all of the many I have done that are non surgical in nature, that based on what I present with appears to be classic SIJD at this time, so all available generally accepted and some not so generally accepted has been tried to help resolve this issue.

Sorry about the long posting, I feel it would hardly be fair to you if I asked my question, that I am sure may stump you as much as it has in my local area the experts in SIJD and Otho Joint and back issues. And, everyone else so far, however I have yet to grow tired of learning more, and or trying to help myself, or someone in the medical field help find an answer, or something to at least reduce the level of the pain... Medicines to date have failed to touch it, and twice now left me with ectreme adverse reactions, both not the planned reation out of me. Yet, both could have killed me. Again, I knew the risks, maybe not as well as the Dr's to that extent. I mean you can only base what you know on what clinical tests show, reseacrh, and such as well as the manufacturer of allowed meds... Sadly sometimes an ooops happens. So now I type really long detailed posts as a side effect... O,o :-P (kidding :-P )

I have looked into and fully understand all involved with SIJ fusion surgery, not only have all 100% of my medical team over the years and currently tell me... DO NOT HAVE THAT DONE. Now, i work(ed) at Strong Memorial Hospital Orthopedics, and my SIJD has surpassed what they can do for me, I have also seen everyone esle even slightly interested in the SIJ, and after being treated by all of them... SIJ fusion and bone graft is the last option according to all of the medical information I can locate, as well as what I have been told is what is next...

I am 38 years old now, and to me the risks involved in that surgery are more than I feel I want to take on. And, I am not a Dr. I worked as a secretary for the Ortho Dept. But, I made sure to see the best we had in the area of SIJ problems. Thankfully, yet it also is known that SIJD does not damage nerves, like with comrpession and such... So I do not present with any signs of nerve damage to this point.

However, I am left not able to work, not able to function even using properly fitted crutches... I am in effect trapped to my highly ergonimic home office chair where I can tolerate sitting...

My Dr has prescribed a wheelchair for the rest of my life, or until if I want to risk it... Attempt the SIJ surgery. My Dr's have to this point flat out refused my first requests for a cane, walker, wheelchair... Any assitive devices. They had worried then at age 25 I might become dependent on them. I was to young to need anything like that... When is the proper age where living in chronic pain more acceptable? To me it should be never.

But, I also realized they had my best intersts in mind. Yet, I needed a cane, I had one donated to me, and a wheelchair in order to ambulate the amount I could, and wheel the rest of the time we had planned to be out for longer times... Any of you like going to festivals? Outdoor events? A walk around the block? Well about 100 feet was my limit for a long time... Over 2 years, where I used a depot style wheelchair K0001 as it was originally designed to be used. Short term less than four hours max a day, and only when I needed to use for distance over 100 feet.

My Dr's told me that I was doing myself more harm then good at the time... I was in the two plus years walking more, and more... And, once I was shown how to use my tens machine and the cane, I was walking with a limp, and over time the cane was left home, and I donated both to someone else who needed them.

To my Dr's amazement I truelly used these items as they had been designed. And, I never realized this until very recently.

Over time the SIJ issue would become a problem enough to cause me to go out on long term disability. I had applied for SSD in 2005 and was dined, and at that time I did not use a wheelchair... I was stuck indoors more however, but I was walking around my home as best I could with a cane I bought. And, with Bextra at the time I was able to get back to working again... Then Bextra was removed... Then for a short time put back on... However, the second time I was on it... It did not help me whatsoever, and so I was careful not to aggravate the SIJ.

Then in 2007 on 2/14 we had a light fluffy snow fall... And, my wife had been yelled at by the snow plow person we hired to plow us out to grab a shovel and do it herself... She asked if I could clear the deck a tiny 8 feet by ten, and the three feet to the car... I barely picked up the shovel and I felt the twang of pain from the left SIJ... So I get SI joint injeextions four in total, two packs of super powered short term use steroids... And, nothing. Oh, if you ask what about PT... Well no one wants to see me after a few visits, I tend to force myself through my pain, and amd able to perform most things they ask me to try in pain. They tend to get a little worried they are hurting me... Even when I say this is normal, it will pass, and I can try some more... I have been told not not return countless times, and had people tell me that my PT would no longer accept me... And, this is after they initially tell me they are expert in SI issues... And, know just what to do tot help me. So I am all for it...

Well, this time around I needed another wheelchair, and my boss kindly donated one to me. A K0004 high strength lightweight wheelchair, as I no longer could make 100 feet. I was down to maybe 30 feet on the good days. Yet, I could still function at home and partake in daily activities we all do.

Then I had other treatments that left me no worse for the wear... Although the chiropractor who was expert in SI joint issues, his treatment caused the pain to go up... I came in at a 4 with it topped a 6 to 7... I left where is was a 6 or 7 and after some time, and it calmed down to about 5 and 6 I tried SI injections, and accupuncture, none worked to provide a resolution or help. The RFA was done after years of trying everything else that is listed as treatment for SIJD, and this was the last before surgery...

Now, my K0004 wheelchair fails to meet my needs... And now I need a wheelchair for the rest of my life... I have tried more wheelchairs than I ever thought possible. More configurations on them than there where wheelchairs...

I am working with a wheelchair fitting expert a Rehab Technology Specialist who for over 13 years working with the areas PT and OT tharpists has been fitting wheelchairs and people. He also has experience that makes him even more expert than even the very best able person in the same profession... For over 20 years he has lived life from wheelchairs. He has so much more real life hands on insight that he has shared with me... This is how in seven weeks I know understand so much about wheelchairs, and the biomechanics.

However, something I am trying to do is all the leg work for my Dr, who I think he told me I was his very first wheelchair bound patient... I had everyone work up a request in proper fashion to send Aetna... Denied. Based on my diagnosis... Not, on my real life issue that nothing that is in the information they used to deny me on has resolved my issue... 30 pages of a letter of medical necessity was sent in... All shot down...

So I appealed as the customer... I explained everything here and more... Compared side by side the exact features, and what function these did or not offer me... I stated the facts as I saw them in layperson speak. I am very mechaniclly minded, and was able to paint a clear picture of why ergonomic options will prevent the need for medical issues from use of improperly fitted equipment long term. I explained the full detial of the SIJ fusion surgery gave the the risks, and the potential costs vrs my using a wheelchair that meets my needs... That they could buy 4 or 5 of to cover me 20 years... If each only lasted 5 years each... However, I also explained that the wheelchair that meets my needs would more than likely last me 10 or 15 maybe my lifetime. And prevent the need for a power wheelchair whcih was the next step, until we located this one... All 14 or so pages of my appeal shot down... I even stated how they are violating there wheelchair policy... I own a wheelchair now that fails to help me. One that is in the range of wheelchairs you want me to accept...

Well, a few phone calls later, I found out that Aetna will cover ANY wheelchair if it is $500 or less. Also, I pointed out in the documentaction they completed or rather the people hired by Aetna Wheelchair Professionals who marked me as not owning one... Where in the paperwork sent to them in the first request stated more than once I own a Medicare approved wheelchair... Oddly they missed these clearly stated words... So I wonder if they ever even read anything at all. And, did not just find the diagnosis, and look it up and deny based on it alone...

Now they are asking for another letter of medical necessity... As medical evidence they find based on generally accepted peer reviewed published medical studies, clinical data... Blah, blah... My diagnosis does not warrant the level of wheechair that has been requested/prescribed to me... By my Dr, a wheelchair fiiting expert, and my OT...

So, my question is:

Where can I locate freely available online or through a librarry I can access online generally accepted medical documentation on the RARE cases like me who have not been helped by the current technology of medical science?

I like being an active patient, as it helps me not become bitter, angry and such when things seem to not work. I also can understand all of the medical speak, and text at this time in regards to my SIJD. I have noticed that Dr's, and others prefer a patient who is active versus one who says I hurt here, fix me...

Well I hurt, I know why, yet my SIJD presents with no defined medical evidence to show using the most state-of-the-art of today's medical science can provide. Fine, not a big deal.

However, I am taking notes as to what, and what has not worked for me... And, once I find the right combonation that works for my condition... I have a funny feeling a new breakthrough in pain management, or diagnosis of unknown to medical science SIJD will have one more possble answer to help others...

Here is what I gatjer at this time with my condition:

The nerves that the RFA took care on 9/15/07 have grown back as much as they will. That is for those that did regenerate, and it is not fully known if the small area around the needle migh have dmaged and not fully burned the nerves providing the pain...

The annoying thing is not only can nerves be supplied from the back side, but also through the pelvis and front side. Where if it is the front side, there currently is no means to access those, without great risk to me.

As it is RFA could have injured the nerves to my leg, my groin, my bladder, and bowl areas. Thankfully these are working fine.

I only get minor shapr pains to the groin area, and only minor pain into my left cheek (butt), and they last mere seconds to maybe a few minutes... And, do not happen all the time, in fact very rarely happen.

The way the SIJ problem was found was while I was in hydro therapy, and after my discription and observation of me, she realized as I was floating in the fetal position what was goin on. Before she told me anything for the next five of six sessions she had me doing other things the test the SIJ as best as she could. Sure enough I culred up, and she told me what she thought it was...

Last weekend after over three years from the last time beeing in a pool, I found a place with a walking pool. The floor is a huge treadmil, that comes up to allow people to load onto it without being in the water yet. Then then lower you to where it is best for your hieght, in front of you is a waste heigh grab bar.

My thought was the force of the water agains my torso, and legs caused stressing on my left SIJ, and this was the floor moving for me, and me stationairy in the water with no stressing of the SIJ...

I lasted three minutes before I was at level ten pain curled into the fetal position... It seems that the lift from my torso, and the gentle tug of the down force gravity, combined with the motion needed to walk was more that my SIJ could tolerate. The facility is a fitiness center for people of all disbalilites, and the person ruinning the machine was a Pain Managment Major at a local college working for credits.

I do force myself to walk eveyday once or twice an hour, even with the loaner wheelchair that allows me to access the rest of my home, I still walk as much as I can to avoid abnormal tone, or more than I am now... And, to prevent as much as possible muscle loss.... Which I have lost about half of in my legs... I plan on not giving up, I just need to make use of a ergonomic wheelchair that allows me to self propel with the least amount of force, and effort in order to not aggravate the left SIJ...

So, I seek any information that can help me gather it for my Dr, for him to review and have final say on... As, I will be asking him next to write an appeal for me... And, that is a massive request as it is an appeal, and letter of medical necessity all in one... And, Aetna even after I pointed out the errors... They told me to use my last appeal, or have my provider appeal to tell them about the errors... O,o

Please point me to the information, and I will read it and use what pertains to me case, and get it to my Dr ASAP... As if this fails...

Life for me will be confined to my home office chair... No access to the outdoors, and if a fire breaks out... Well... you get the ideas...

Wheelman
The Pro-Active Patient

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What makes you thing SIJD is rare?
Your symptoms seem quite strong and that is rare but SIJD is very common but very poorly understood problem. And that is why good manual treatment is very hard to find.
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try dr kapural at cleveland clinic-one of world's leading sij specialists
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I have SIJD which keeps me in pain levels 8 to 10 all the time. I have no insurance. I go to the community health clinic in my area. I work a very physical job and have for all of my life. I am 47 years old and work everyday in really bad pain and cannot get any real diagnosis from a doctor and i get no treatment for pain. I cannot take NSAIDS because I have ulcer history. I take tylenols but they do not help at all. I don't know how much longer I can work and live everyday in this pain. I do it though because I am one tough b***h and I have no other choice but it would be nice to not be sterotyped because of gender and shape I am in. I am in pretty good shape for 47 yr old female. It would be even nicer if I could get some relief from this pain. I also have psoriatic arthritis and have no treatment for this either. I love physical work and activity but am becoming limited because of the pain. These post on here are soooo old so this probably will not get a response.
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Hi,
Cold laser therapy and/or prolotherapy and sacroiliac belt are the only things that really work for SIJ malaise. After 10 years of getting nowhere, these are the things that finally helped.
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I have been living with this horrific pain for about a little over 4 1/2 years. At first I did not know what I was living with. I have went to an orthro back surgeon who told me I had mild bulging discs and said my spinal column was in good formation but had a tip in my spine (I wonder why). His assistant told me to give the very mild bulges time to heal BUT THEY were not touching any nerves or nerve roots??? No major tears. Three EMG's. The first EMG doc diagnosed me with bilateral tarsal tunnel syndrome, a podiatrist, foot surgeon, vascular surgeon 2 MRIs CT scan and X-Rays and the those docs told me there is nothing wrong, like this is all in my head. My symptoms are chronic lower back pain that radiates down the back of my legs right down to both feet which I have constant pins and needles in feet. Hard to sit, walk, and stand very long. Can't sleep long because every time I toss or turn in bed the si joints keep sliding or pops and HURTS LIKE HELL. Tried PT and when I came home I felt like I was dipped in acid from the waist down. I dumped that PT and went to another clinician PT and he examined me symmetrically and said I have SI dysfunction. Right side is rotated and is also affecting left joint. He told me even if I went to a chiropractor to re-align them as soon as I would reach my front door they would dislodge again. I seen a physiatrist and he gave me 2 injections that confirmed my problem. I am currently going back to the PT to try to undo the jammed joints to reset. Because this was left untreated soo long degeneration set in the joints. Right know it is intermittent . I would like to add I had some hard falls in the past and I believe the torn ligaments never healed right plus I have a leg discrepancy that is starting to cause muscle imbalancement along with the joints and bones. Some Doctors just don't think SI joint dysfunction would cause problems like this. Shame on them! My life is not the same...Never give up and persuade these specialist a cure or at least one we can live with and give us our lives back....

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I had horrible si joint problems for 2+years and tried everything from injections to pt to massage to accupunture to chiropractors to radiofrequency ablation (twice).. I saw a back surgeon in MN and they referred my to Dr swiontkowski at TRIA who pretty much wrote the book on si joint fusion. I am 14 months post fusion and have 100% pain relief! theu left si has givin me some problems as well, but this time I will not wait as long to soo him...too much to live for and I do not want to miss to kids growing up while I lay in bed in pain.

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I have a similar conditon, going on 4 years now. I was wheelchair bound for a while and obviously totally depressed. I have been getting prolotheraoy now for over a year and I can almost do anything I want now. I am continuing treatment until I am completely healed. You should defintiely look into it...it is a quality of life saver. You are in my heart, I feel for you.
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Hi ,

My wife is suffering from the SIJD since 4 years and she is still having the problems as you all are describing. It took 3 years for the doctors to isolate the problem and her situation is becoming worse even in the care of specialists and undergoing PT for core stabilisation exercises.

The last specialist said he did not have a clue why her pain levels are increasing even with the treatment. He more or less said that my wife shall continue the PT and understand to live with the pain. He reckons no other treatment like prolotherapy or fusion would help situation.

We are kind of lost now as they are saying there is no treatment to bring the life back. Her social activity has become zero and he practically could not do any thing apart from her daily routines.

Can any body advise me what is the success rate of fusion? does it work always for the acute SIJ problems that do not get better with PT, Cortisone injections.

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I am against fusion jsut because I cannot fathom how further limiting mobility in a joint can lead to anything other then more pain and breakdown in other areas as it compensates for this frozen joint. I would not listen to your doctor about prolotherapy...of course he doesn;t think it will work he can't make money off of it and he was only trained to do surgery, so that is what he wants to do. I implore you to look into prolotherapy. It is noninvasive and if it doesn't work for her there is no harm no foul. There is no risk in trying, but huge risk in surgery. Just my opinion after years of going thorugh the same thing and coming out the otherside. I am so much better off becuase of prolotherapy that my husband and I have gotten pregnant. That is something I would never have dreamed of doing before.
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the SI Joint isn't suppose to move very much in the first place. when it becomes injured it starts to loosen up which creates the pain from my understanding. I've heard this from five different doctors that specialize in this area.
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If anyone is looking for support and information from other SIJD sufferers there are 2 support groups on Facebook.  I have found lots of information that my doctors never even told me about to include exercises, treatments, surgery, etc. 

Logon to Facebook and search for

Sacroiliac Joint Dysfunction Support Group by and for Patients

SACRO-ILIAC JOINT SYNDROME / SI JOINT DYSFUNCTION - SIJD

 

 

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SIJD is not rare at all. I am an admin for a FB group for SIJD and we have 970 members now. Sorry you have so much pain Wheelman and the docs haven't helped you.
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Please give me some advice!! I don't know what to do. I am 33, I've had 2 laminectomys, neither took the pain away, until my last surgeon referred me to Dr. Swiontkowski at TRIA ( I was super exicted to see your post!) SI joint fusion scheduled for Oct 16th (2 weeks away). Called my insurance company (medica) today, and they said its not covered because it hasn't been FDA approved and is considered investigative!! I am just sick about this, he was my very last hope. I have two young children and would be devastated if I have to live like this forever.
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For all you people suffering, there is a surgery that can change your life forever for the better. First I would suggest finding someone who is a Massotherapist thru the John Upledger foundation for muscle re balancing. They can be found thru google search. Next look into Gainsville Pt in Georgia Vicki Sims a specialist in this field and Dr David Weiss in Gainsville Georgia.

My 15 year battle of my was resolved there........never never give up Si Bone can also refer you to one of their trained specialist, they went and studied Vicki and David Weiss and were training all surgeons to adjust your pelvis before surgery. There really is life after sijd.......and I can now walk again.......Best of wishes and mile of walking ahead of you with the proper treatments....2 yr post Ohio injured worker......

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