By Charlie on Tuesday, August 08, 2000 - 11:22 am:

I've been suffering from hypermobile sacroiliac joints/sacroiliac dysfunction ever since my osteopath 'restored the normal range of motion' (not) in October 1999 and I've been amazed at how little is known about this painful and disabling condition. I live in the UK and have had zero luck with our National Health Service. I've also tried just about every other alternative/complimentary therapy under the sun and am still in much the same condition I was in ten months ago, namely unable to sit or walk without my joint clunking and clicking (noisily) about, which inevitably causes painful bruising of the surrounding soft tissues, muscle spasms, sciatic pain and my back is slowly developing worse and worse patterns of tension and misuse. Very little I do seems to make any significant improvement to my condition. I have been bedridden for months and am looked after for by my mum - I am only 27, otherwise very competent and would normally be enjoying some of the healthiest years of my life!

Since seeing these message boards I have become aware that I am not alone and this knowledge has cheered me no end, although of course I wouldn't wish this miserable disease on anybody.

The purpose of this conversation is to start a discussion between fellow hypermobile sacroiliac sufferers (and anyone else who can help us out of course) so we can find out what really works and what is a waste of time, or maybe even is preventing our recovery. Ideally it would be nice to have a whole message board devoted to this topic - perhaps we can persuade the forum to do so. For the time being I would really like to hear from people who have or who have recovered from the same problem.

I am particularly interested in the stories of people who have managed to cure their sacroiliac problems without resorting to prolotherapy (or surgery for that matter). As there seems to be no prolotherapy available in Europe, if I can avoid a trip to the US then my already dejected wallet would be much happier.

I would also be interested to hear from those people who have had prolotherapy on their sacroiliacs - as much detail as possible would be great. Please email me at charliewillbe@bigfoot.com if you don't want to post a message.

Here's hoping we can help each other to fix our Sacroiliacs!

With my very best wishes to all who contribute to and benefit from this conversation.

By Sheena on Tuesday, August 08, 2000 - 02:58 pm:

Charlie, it is possible to see a specialist in hypermobility on the NHS. Have you found the HMSA website?
www.hypermobility.org/
The association should be able to give you names of local specialists.

Prof Grahame has a clinic in London and I think there is a specialist in Glasgow. Don't despair - best of luck.
Sheena

By Park Griffin on Wednesday, August 09, 2000 - 08:20 am:

Charlie, My wife is a SIJD sufferer, and I feel for you. It's easy to tell you what doesn't work... conventional manipulation/mobilization w/anti-inflammatories and pain killers. There is a forum for SIJD suffers that you might try. www.delphi.com/sacroiliac/start ...It requires a brief sign-up but it's free... My wife starts prolotherapy on Aug 15th. Her case doesn't seem as bad as yours. Her SIJD is more the "silent type". Her's is a problem of constant referred pain with occasional "catching" of her SI Joint. She will be walking along and bam, her right hip area locks up. There is a component of the structure of a joint called the capsule. Her prolo doc told her that prolotherapy is not as effective if the capsule is torn. He said that popping or catching in the joint leads to the conclusion that the capsule might have a tear. The more frequent the popping or catching, the larger the tear in the capsule. Good luck!!!

By Charlie on Thursday, August 10, 2000 - 04:30 am:

Thanks for all the helpful information - I am very glad to be learning all this information and know I have lots more to learn. Park Griffin I think your wife is lucky to have such a committed and supportive husband, best of luck to her.

I have a couple of questions for the time being: would the torn SI joint capsule show up in an MRI scan? And can an MRI scan be of any use in diagnosing and treating SIJD?

From what I'm learning I have more of a specific joint disorder than general hypermobility, or if I do have 'all-over' hypermobility then it is only mildly so. Nonetheless I am keen to find out more about it if it is affecting my healing.

Thanks again for taking an interest and helping me learn more.

By Park Griffin on Thursday, August 10, 2000 - 09:53 am:

Charlie, I'm pretty sure that an MRI won't do the trick. However, there is an imaging procedure called an SI joint arthrogram that helps image the structure. My wife starts prolotherapy soon and her doctor is going to do the first series of injections under fluoroscopy. Fluoroscopy is a type of x-ray procedure that creates a real-time video of the "x-rayed" area. The doctor can look at a television monitor of the x-rayed area while he gives the injections. He will be placing some type of dye in the prolo solution while he gives the injections. This will help him visualize the area. In essence he is doing an SI arthrogram at the same time he gives the prolo shots. Don't give up!

By Ted on Saturday, August 12, 2000 - 03:38 pm:

Park, Who is your Prolo Doc. This Arthrogram is interesting. I've been having a lot of Prolo injections on my ankle w/ little results and am wondering if this might be helpful?

By Park Griffin on Wednesday, August 16, 2000 - 05:06 am:

Ted, A Joint Arhrogram is a means of obtaining an image of a joint where by a doctor/technician can get a more "three dimensional view" of the joint. A dye is injected into the area which gives the image contrast which provides a means of depth perception to the area. For prolotherapy, it gives the Doctor a better chance in accurate needle placement. Many doctors use fluoro imaging on the first session only. It's fairly easy for an experienced prolo doc to hit the area that they hit before by palpitating the previous injection site while they insert the needle. My wifes prolo doctor is Vladimir Djuric, MD out of Canton, Ohio. Let me know if you want more information about him. Thanks, Park

By ted on Wednesday, August 16, 2000 - 06:18 pm:

Park, Thanks a lot for the info. You seem very well informed on Prolo. How about some free advice? I've 12 injections over a year w/ virtually no apparent improvement while a number of other simultaneously treated areas have improved. (tried adding fish oil, zinc to the injections w/ little change)Am taking lots of the recommended suppliments & soaking the ankle 3X a day in hot water all to no avail.
What's your opinion - keep at it, get an Arhrogram in hopes of seeing exactly where the problem is, get a new doc, or what?

By emp on Wednesday, August 16, 2000 - 07:01 pm:

PArk, you seem very knowledgable. I had a PT "put" my pelvis back "in" which relieved lots of things but then it seemed to shift( more rapidly the more he put it in) I agree with many on the board that PT makes it worse. How do I know that when I get the shots, the pelvis is in the right position and heals properly? Does that make sense? Are you a Dr or a good researcher?
How did you find your DR.? I replied to your e mail on another string that I have already visited the Pain Clinic at UPMC at it was not a good fit. Have you been there?

By Park Griffin on Thursday, August 17, 2000 - 04:52 am:

Emp, I'm not a Doctor, however, both my wife and I are medical professionals. She is a certified registered nurse and I am a clinical engineer. How we first found out about prolotherapy was from her best friend who is a medical insurance claims investigator. We have been researching prolotherapy ever since. I did most of the research on prolotherapy and my wife came up with a profile of a certain type of doctor that she would be willing to go to. We found such a doctor in Canton, Ohio. She had her first session this week and it was painful, it made her stiff, but we went shopping afterwards and she was able to shop for a couple of hours. As far as the Doctor we are using, I would recommend him to anyone for prolotherapy. Now it's wait and see if the treatments will work for her. His prices are very reasonable also. We drove 3 hours to get there. Maybe you could see him also. What is your injury, again?... Let me know if you want anymore info. Thanks, Park

By Park Griffin on Thursday, August 17, 2000 - 05:13 am:

This message is for Ted. To be totally honest Ted, I not sold on prolotherapy that it works for all joints. I however am sold that it is a very good option for people with SI Joint problems. The reason is this: The gap between the Sacrum and Ilium is small. A shot at the bone/ligament of the ilium will have a positve effect on the sacral interface also. Here is my question. If a spectific ligament is long and you inject both sides of the ligament where they attach to their respective bones, what happens to the middle of the ligament? Also back to the SI Joint: if a doctor palpitates the area and feels your pelvic ridge at the SI Joint, many doctors inject the "snot" out of the SI and are bound to do some good. My suggestion if money is not an option is to try prolo under fluoroscopy for your ankle. My thought is that very accurate needle placement will give you the best chance. Where do you live? Also, visit the webiste of Truett Bridges, MD @ www.docbridges.com E-mail him, he will answer your questions. He said something that I liked. He said that prolotherapy with PT and pills is not the main factor if prolo will work or not. The main factor is this: Once you find that loose ligament, and hit it with accuracy each and every time, that is when prolotherapy has its best chance of working. P.S. I want to correct a typo the correct word is arthrogram. Sorry...

By Sharon on Thursday, August 17, 2000 - 04:38 pm:

Charlie, or whoever has this problem: I just started going to a Dr. for prolotherapy and had my first injections this week for SI joint problems. He said mine is the worst he has ever seen. I have been told that by many drs. The injections hurt a little but not much soreness since. I am told this is my last resort and I am praying it works. I have been flat on my back a number of times and couldn,t walk, sit or stand. I have tried pain clinics, etc. and they were of no help. The prolotherapy Dr. told me he thinks their is at least a 75-80% chance that my SI joint will be restored. If any way possible I think you should come to US and try prolotherapy. What I have been through--there seems to be no other therapies that work. I will let you know how I make out.

By emp on Saturday, August 19, 2000 - 02:53 pm:

This is for Park. Can you provide the name of the doctor in Canton? It is not far from me so I would like to speak with him. I am not sure that my problem originally stems fromn an injury but it may have been aggravated when I flipped off a stool (sober at 6 am trying to get kids breakfast) and tore my ACL. ACL has been replaced by Fu using hamstring but it seems to have affected the SI joint. Lots of DR.s have been clueless with the exception of one who recommended the prolotherapy. HIs only comment was "Yup, your pelvis is mobile...we can usualy loosen things but don't know how to tighten ligaments" Not very encouraging after 1 1/2 years of searching. .
I think the SI movement is throwing everything else out of whack. The neck and back problems I read about in other people sound familiar. I have found that it actually causes my calf to twist and I feel "tilted" in high heels. I have been doing as much research as possible but haven't felt confident in the pain clinic DR at UPMC. This site is the first place I have found that sounds Have any suggestions as to next steps? How did your wife create the Dr. profile? I would be interested to understand her criteria? How often do you have to go for shots?
Thanks for your comments. You need to know they are helpful

By Park Griffin on Monday, August 21, 2000 - 09:38 am:

Emp - here's the info you requested:

Vladimir Djuric, MD
c/o Ohio Rehab Center, Inc.
6651 Frank N.W.
Canton, OH 44720
Phone: 330-492-2500

My wife's criteria: First off - The doctor must be conventionally certified in one of these areas (physical medicine & Rehab / physiatry / orthopedic medicine)

Second - The doctor must be an experienced prolotherapist.

Third - upon the first consult visit with the potential doctor - if they did not perform a thorough physical assessment on her she would not go back to them.

Fourth - My wife brought a nurse friend with her to probe the doctor about her condition (done as a test to see if the potential doctor "knew their stuff" about SI joint dysfunction.

Dr. Djuric met her qualifications. He is a pleasant doctor and his prices are reasonable. She has had one session so far. The procedure is painful and it brought her to tears. However, we went shopping for three hours afterwards w/mini-breaks in between. Of course it is too early to know if the prolo will work or not, but, she has felt a difference in her posture all ready. (she feels like her body goes sideways while she walks straight. The prolo actually made her feel that her body was aligned properly while she walked. It has seemed though that her alignment is reverting back again. We have been told that permanent changes start to happen after 3 sessions. Also she is starting PT and medical massage to help keep her in alignment as she goes through the sessions (Doctor Djuric's orders)Good Luck !!!

By Lucy on Wednesday, October 25, 2000 - 02:45 pm:

Dear Charlie:

First of all, I'm really sorry you're going through this. After six years of dealing with a subluxing SI, I had my first set of prolotherapy inujections on Monday. Let me preface this by saying that I too have tried EVERYTHING, and this is my last resort before surgery, which I really want to avoid.

Here's how prolotherapy works and how it feels: (I'm not a doctor, but I go to every doc I see with a notebook, and come home and do my research).

Prolotherapy is a dextrose solution that is injected in a very targeted fashion into the ligaments. The idea is to inflame the joint to such a degree that it kicks back into repair mode (after 100 days a ligament injuring ceases to repair itself) and causes the tissue to scar. This scaring shortens the ligament thus inducing more stability.

The SI joint has a movement range of about 5mm. It only takes a tiny bit over that range to cause all the horrible problems we suffer from. (I have started to get scoliosis from all the movement).

Prolotherapy is meant to be painful - it creates inflammation, takes several treatments (I have 8 which are 2-3 weeks apart), and isn't that great while it's being done. However, it's better than being cut open and if it works then I'll be throwing away the painkillers and opening a bottle of Champagne.

The doctor I saw for this (I live in Boston US) actually told me that Prolotherapy was designed for people with Ehlers-Danlos III and hypermobility syndrome.

In conjunction with the Prolotherapy I am also going to physiotherapy 2 times a week. It is essential to strenghten all muscle groups, especially abs and bottom.

While all of this is going on, I take valium in the morning and pure painkillers in the afternoon (no anti-inflammatory drugs allowed - you're meant to be inflammed!). I never take anything before I go to sleep, or if my pain doesn't warrant it. But you do have to be prepared to get "down and dirty" with it - it's going to hurt, but it's meant to. And the fact that it hurts does, for once, mean that it's getting better.

I thoroughly recommend it.

I used to live in England and I was first diagnosed by Prof. Rodney Graham at Guys Hospital.

There is a physical therapist that my brother saw (he has this too!) and she has saved his life. She is at St. Georges Hospital, Thomas Guy House, St. Thomas Street, London, SE1 9RT. Her name is Hillary Ratoo (spl) - tel: 171-955 4070. (She will be able to help you find a prolotherapist - by the way, prolotherapy is also referred to as "sclerosant agent therapy".

A private appointment with Prof Grahame costs about 100/120 pounds. His # is 020 7955 4508. He is located at the Hypermobility Clinic, Arthur Stanley House, 40-50 Tottenham Street, London, W1P 9PG. To see him on the NHS will take you into the middle of next year!!!

Please feel free to email me if there is any other info I can give you.

All the best
Lucy

By laura on Saturday, December 09, 2000 - 03:20 pm:

Does anyone know whether Prolotherapy works on people with EDS 111 and scoliosis, I have several vertebrae that sublax upto 6/7 times a day, and the only way to temporally get rid of the pain is to roll around on the floor clicking everything back in. Would the prolotherapy make my 36 degree curve worse?