By Karin on Monday, August 27, 2001 - 09:15 pm:

Had 3 treatments, next Tuesday the next one,
and I'm feeling so much better. 15 years of
misery...up and downs, more downs. Just by
accident found the word Prolotherapy and new
instantly that this was the treatment for me.

Now I'm going to bed, no pains, and no thoughts
of, how I will feel tomorrow.

Try it. There is no harm in it. Just try to
find a qualified Dr.

Good luck. :) Karin

By Park Griffin on Friday, September 07, 2001 - 05:02 am:

I'm happy for you!!! It took my wife six sessions before she felt like it was really going to work. She has had 12 sessions so far (one a month). She had a hypermobile SI Joint from an injury (with all the other fun dysfunctional stuff that goes along with it, too)...

She has all ready opted to continue until at least 18 sessions. She is just now starting to do abdominal bracing, pelvic clock, and etc exercises while sitting on the therapy ball at odd angles.

She suffered with her SI problem for four years before hearing of prolo. I have been on a crusade ever since soaking up as much info as possible ever since.

Congratulations!!! Park

By Lucy on Monday, September 10, 2001 - 06:55 pm:

I am wondering why I haven't experienced any benefits from prolo. In fact I had such a bad reaction to it that I had to stop. The most awful spasms that took over the whole right side of my body occurred during treatment and the treatments themselves were agony (I don't really respond to local anesthetic). Park, I have chronic hypermobility in my SI joint too on top of all the Ehlers-Danlos stuff and I've been dealing with this for nearly 7 years - can you shed any light as to why prolo works for some and not for others? When I saw prof Grahame in London, he told me that no conclusive studies had been done to say whether prolo worked or not. I do look forward to your comments and I'm really happy that some of us are beginnign to feel better. Lucy

By Erin on Thursday, September 13, 2001 - 02:45 pm:

I read somewhere that there are prolotherapists who do not do prolotherapy correctly. They should inject the solution at the right spot, otherwise it would be a waste.
Also, different prolotherapists use different solutions and techniques.
Who is your prolotherapist? What solution and technique did he use?
The first time I had prolotherapy for my TMJ (done by my first prolotherapist), I had a dramatic improvement as far as pain and forward jaw instability are concerned. She used lidocaine, dextrose and sarapin. The solution made me feel good right after the treatment. I was supposed to return the following month, but I returned the following week because I read somewhere that improvement may be faster if done more often. I did not have noticeable improvement the second time around. I switched to another prolotherapist the following week. He used the same solution plus manganese. The manganese is supposed to make the solution stronger, but painful for a few minutes after injection. No noticeable improvement. I returned to him two weeks later (yesterday). He used the same solution. I am not sure if I will have another improvement this time. I am thinking that maybe I am still improving but in a very slow pace, that is why I do not notice it. I was hoping for a dramatic improvement, just like the first one. Prolotherapy depends on the healing capability of the body. It has been a month since my first prolotherapy. I am hoping that I will still improve.

You might want to ask your prolotherapist to give you anesthesia other than local. Also, ask him if he can give you the basic ingrdients that "will not hurt" (dextrose, sarapin and lidocaine, in my case). Manganese hurts.

By Park Griffin on Monday, September 17, 2001 - 10:34 am:

Lucy, what solution did they use? That may have caused the bad reaction - Also, if you have even the slightest reaction to laytex gloves, that many injections into a localized area will give you some pretty bad welts.

Genetic hypermobility is different than someone whose hypermobility that came from an injury. Typically only the long and short posterior SI ligaments stretch when someone injures themselves. The other area that becomes injured is the anterior joint capsule.

Prolotherapy is not a cure - it is a means to an end. Prolotherapy is not a pain reliever either. Pain relief is a secondary effect of the treatment. Setting the treatment aside for a second and just looking at SIJD, there is a goal that must be achieved. The goal is to get your SI back in proper alignment and keep it there. EASIER SAID THAN DONE...

Typically when a person has a sublaxed SI put back in place, the long and short SI ligaments are loose. Prolotherpay tightens and shortens those ligaments.

Why does prolo help some and not others:

1. Anterior joint capsule has a disruption

2. The ligaments are stretched and torn too much

3. Genetic hypermobility affects other ligaments
like the sacrotuberous, sacrospinous,
iliolumbar, etc... If these ligaments are
dysfunctional, too; aligning the SIJ's and
keeping them in place is nearly impossible.

4. Inadequate professionals handling your care.
Especially, physical therapy. A compitent
physical therpaist is a prerequisite if you
want to get better. A research therapist who
has studied the SI for 40 years puts it this
way: About 10% of physical therapists state
that they know how to treat SIJD and of those
10%, only about 2% really know what they are
doing.

5. Some people require wearing a lumbosacral
support (not the same as an SI belt).The SI
won't heal when you are out of alignment.

Lucy, you are going to have to learn how to align yourself back into place. The rate of atrophy is directly proportional to the amount of time your SI is sublaxed.

You should visit this site: www.kalindra.com Print out the articles "manual therapy rounds" and critical analysis of the failure of the self-bracing position". Shop these articles around to your professionals. There are a good many reputable doctors who don't understand anything about SIJD.

You should also ask the author of these articles questions about your case. He posts in a forum at: www.delphi.com/sijd/start

My wife has had 12 sessions of prolo so far and it is definitely helping!!! After the first few sessions the shots weren't as painful any longer, either. Good Luck !!!

By Karin on Tuesday, September 18, 2001 - 07:37 pm:

One forgets how you have felt when you were in
misery months or years ago. It takes a long time
before positive results are established. 15 years
down hill can't be erased in a couple of sessions.

Next week I will have my 5. treatment and I
still have my up and downs but in April I wanted
to pack my suitcase.

It may not be a cure but this is the only
solution for me. I don't have the SI problem
just all of the joints in my back.

Keep writing, so we can stay in touch and
see the results for all of us.

Take care and good luck !

By Judy on Wednesday, September 19, 2001 - 01:41 pm:

Lucy, I think Park has made a very good point concerning allergies. I have multiple allergies and I think prolotherapy would also cause me to have a reaction, so I was glad to hear about the "lumbosacral support." I told my PT that I can't handle anything tight around my waist since it causes pain, so the SI belt is out. She never mentioned this other option; it sounds like a good possibility with promise. Or, maybe a person can be tested ahead of time with the prolo solution to see if it causes an allergic reaction.

Judy

By cathryn on Wednesday, September 19, 2001 - 02:01 pm:

Can somebody explain to me what "prolotheray" is? I've never heard of it. Then again I had no idea that there were internet sites like this either! I'm 31 and have been receiving physio, for hypomobility, for about 6 years.

By Park Griffin on Thursday, September 20, 2001 - 10:00 am:

Judy, SI belts can help some people, but they offer no anterior support which in many cases is necessary. One huge reason that SI belts AND lumbosacral supports can hurt is that they are affixed while you are out of alignment. A couple of tips for everybody. The proper way to secure an SI belt is to lay down on it in the supine position. Either have a therapist or through self correction techniques, align your pelvis. When your pelvis is aligned secure the device. The same can be said for the lumbosacral support. Don't secure the straps until you complete an alignment.

About an allergic reaction, I have never heard of anybody having a reaction to dextrose based prolotherapy solutions. Some of the other more "caustic" solutions can be less tolerable, though. My wife brings her own non laytex gloves to the Doctor's office just in case he runs out.

By Park Griffin on Thursday, September 20, 2001 - 10:23 am:

Cathryn, hypermobile/hypomobile, can somebody be both hypermobile and hypomobile??? The answer is yes! Hypermobility causes joint dysfunction. The dysfunctional joint will not rotate/articulate in a normal/full range of motion. It is the loss of range of motion (ROM) that defines what hypomobile means. So what you are saying (which is probably true) is that you have a joint that you have not been able to move through it's normal range of motion in six years. Wow, six years, no fun. The standard of care in this situation is to keep reducing the subluxation/dislocation until it is stabile and a normal range of motion is established. For some reason many professionals treat the SI joint in different manner for some resaon which is totally wrong. For example, if you dislocated your shoulder, you would expect your healthcare professional to pop it back in place before trying to strengthen it. For some reason many professionals disregard the alignment of the sacrum and this is why you can stay hypomobile for six years.

Prolotherapy tightens and strengthens loose ligaments. Loose ligaments may be the reason why you are hypomobile. Prolotherapy in itself is not a cure, but secure ligaments lend to a better chance that your joint can be held in the correct place. Once your joint is secured in the correct position, you can start exercising to strengthen the surrounding soft tissue and muscles. The ability to exercise to keep the area strong is the real measure of success. Park

By cathryn on Friday, September 21, 2001 - 09:14 am:

Amazing what a spelling mistake can do! Hypermobility is the problem.I have it in my hips, shoulders, wrists, knees, back and neck...etc (that would be most of my joints then!) It's been made worse by the fact that i did loads of gymnastics. The pain from the nerves that get caught is the worst thing to cope with. My physio does give me loads (and I mean loads) of strengthing exercises to do, so it would seem that prolotherapy is part of the treatment I receive. Is that the case or are there specialist prolotherapists? (bound to be spell wrong!)

By Park Griffin on Friday, September 21, 2001 - 10:30 am:

Ligaments can heal on their own. That is to say, they stop being a pain generator. However, once stretched, they will not tighten/strengthen on their own. Physical activity/exercise WILL NOT tighthen loose ligaments. There are CRNA's that do prolotherapy and there are holistic practioners that do it also. However, using these kind of prolotherapists even if they are good can leave you hanging. What I mean is this: They can only help you in a limited way. Contrast this with my wife's prolotherapist: He is a Certified Physical Medicine & Rehabilitation Doctor, who completed a fellowship in Sport's Medicine. You should look for a prolotherapist like that. My wife doesn't have to go to multiple doctors to get her care for hypermobility. This one Doc can do it all.

One thing to keep in mind: With long term hypermobility, your risk of disc/joint detioration and arthritis is very high. Prolotherpay can help stave off these conditions.

Have a great Weekend!!!

By Park Griffin on Friday, September 21, 2001 - 10:32 am:

Ligaments can heal on their own. That is to say, they stop being a pain generator. However, once stretched, they will not tighten/strengthen on their own. Physical activity/exercise WILL NOT tighthen loose ligaments. There are CRNA's that do prolotherapy and there are holistic practioners that do it also. However, using these kind of prolotherapists even if they are good can leave you hanging. What I mean is this: They can only help you in a limited way. Contrast this with my wife's prolotherapist: He is a Certified Physical Medicine & Rehabilitation Doctor, who completed a fellowship in Sport's Medicine. You should look for a prolotherapist like that. My wife doesn't have to go to multiple doctors to get her care for hypermobility. This one Doc can do it all.

One thing to keep in mind: With long term hypermobility, your risk of disc/joint detioration and arthritis is very high. Prolotherpay can help stave off these conditions.

Have a great Weekend!!!

By angie on Saturday, September 22, 2001 - 12:52 am:

CRNA, you have to help me on that one. I wish we had prolo in Europe... Just walking some unexpected 200 meters yesterday (on crutches!) has made my hips go crazy. can't sit up straight now, don't even concider walking. Just wish I had something to believe in, like prolo.
Is it an aknowledged (how do you call it?, if like the health insurances recognise it) treatment? that way I could get my insurace to pay for it, perhaps. If they don't how much will it cost me? And how much could one do in like two weeks. Thinking about taking a trip to the states over this. A friend of mine will be coming to North Carolina on his own next December, I am thinking about joining him. It's not like I have too much money, but I just have too much pain right now.

By Karin on Saturday, September 22, 2001 - 06:51 pm:

Yes there is:

In German it's called: Ganzheitliche Orthopaedische Medezin. A German website:
http://marktplatz-cw.de/ghorthmed/s-prolo.htm
It's in German!

Address: Dr. med. Sigmund Halter
Kernerstrasse 211 a
75323 Bad Wildbad

Tel.: 07081-3775
e-mail sigmund.halter@cw-net.de

There is also a Dr. in Berlin but don't have
that address.

Hope, this is of help to you.

Good luck, Karin

I don't think this treatment will help you in
2 weeks. Consider it a lot longer.Also, there
is a very good book called "Prolo your Pain
away". You can buy this book at "Amazon.com"

By Park Griffin on Monday, September 24, 2001 - 01:37 pm:

Angie, A "CRNA" is a Certified Registered Nurse Anesthetist. Some CNRA's due to the fact that they give epidural and spinal tap injections, are very good with needles and some branch out and offer prolotherapy.

Have you had your problem for long? What is your diagnosis? The reason I ask is that prolotherapy doesn't work very well unless undue stresses are removed from the ligament that is being injected. Pretty much the tightening process of the injected ligament can not over come the stress that may be applied to a ligament because of a joint dislocation/subluxation. Equally important to prolotherapy is physical therapy. Specifically a good manual therapist.

By Angie on Tuesday, September 25, 2001 - 11:49 am:

generalized joint jaxity, Familial hypermobility syndrom, EDS III without skin involvement, joint instability, Have heard them all. Guess I am just a (sub)luxating hypermobile individual. Can prolo have a chance?

By Karin on Tuesday, September 25, 2001 - 05:00 pm:

Why don't you try it! Better than surgery and
pills, if that would help?????

Today, I got back from my 5th. injection and
defiantly making progress. It took a long time
but I'm getting there. I almost forgot how
awful I felt in April. The Dr. in Germany is
doing the same injection than I'm getting here
in the USA. I'm sure, if you would call them,
that they would understand English. Explain
excactly your symptoms and go from there.

Or go to a search website and try to find a Dr.
near you. I did! Oh, I had no physical therapy
but I move around and heat is very good.

Just get the book I mentioned earlier and you'll
understand "Prolotherapy" a lot better.

Go for it... There was
nothing out there for me, that would help. This
was my last chance.You found this little forum
then you can find all the articles on "Prolo"
on the websites. There are a lot of them.

By Angie on Wednesday, September 26, 2001 - 03:58 am:

Financially it might be a problem. (apart from the fact that Germany is still a long way from home) My health insurance doesn't just pay for any treatment abroad. I suppose I could call them, I speak sufficient German for that. But I am sort af afraid they will just give me the 'It's fanatastic, come over' story. That's why I want to get as much objective information as I can. I tried the URL you gave me, but it won't open correctly. I did see some headlines that sounded quite 'holistic' to me. That doesn't give me much confidence. Thank's anyway!

By Karin on Wednesday, September 26, 2001 - 06:31 pm:

Website is "Google", then type in "Prolotherapy".

I hope you can get "Google". It's very popular
here in the USA.

You didn't say where you live! If you should
call any place to get information, you can
always say "no thank you", if they give you
the "come over story".

By peter pauper on Thursday, September 27, 2001 - 06:27 am:

PROLO IN EUROPE:
I don't know how accurate the list is but go to
Dorman's site

http://www.dormanpub.com/index.htm
and click on "find a doctor"
then select "prolotherapy" and your country.
He's got docs listed in the UK and Germany at
the very least

By Park Griffin on Friday, September 28, 2001 - 02:50 pm:

Angie, prolotherpay is a holistic practioners dream! No sutures, no drugs, etc... Anybody that is good at giving shots can do prolo, but most holistic practioners overstate the benifits of most procedures. Besides, you will need much more specialized care that only a conventional physician can offer.

Angie, if you have dysfunctional joints whose subluxation has not been reduced to the functional position (especially the SI Joint) you have no chance, I mean 0 precent! of improving. Getting better is much easier said than done, but it is not rocket science either. This is it:

1. A good physiatrist (physical medicine & rehabilitation doc (a good ortho/nuero will do,also).

2. A top notch, I mean top notch manual therapist. Appropriate physical therapy and detailed reporting of your progress to your physician is critical.

Here is where the difficulty arises. When your spine and pelvis atrophy from joint dysfunction, your inner muscle group called the "inner core" weakens. This affects the stability of your spine and low back. While the inner core weakens, the major "mover" muscles in the back tighten up big time. This cascade of events makes doing the simplest of corrective exercises impossible. That is why people spiral downhill with spinal joint dysfunctions.

OK, so you say, what if I just stay with the status quo? Well, most likely, you will end up with severe degenerative joint/disc disease and you will have a good chance of ending up in a wheelchair some day.

If you are serious about getting better, ask alot of questions to your doctor and therapist. Find out which joints have chronic dysfunction that they cannot correct (if they could correct them you wouldn't be posting on this forum). Take a hard look at finding a prolotherapist and having those ligaments around the dysfunctional joints injected. Most llkely this will add stability to the area. You will find that the joint stays in for longer periods of time between corrections. With prolotherapy you probably have a 50/50 chance that it will work good enough to get you over the hump and keep your joints "in" long enough to retrain your muscles to do there job again and hold you in place.

Remember, prolotherpay is not a cure, it is the stepping stone between failure and function of youe spine and joints. Persistance is the key. You have to be persistant in altering your lifestyle and knowing your limitations. Basically, don't do anything that will make your joints pop out. Your physcial therapist must be persistant in continuing to stick with manual therapy and corrective exerices until your joints will stay in. Many therapists don't have the patience to stick with a manual therapy treatment plan long enough for it to be effective. Most importantly, you need a persistent doctor to coordinate all your care.

Lastly, prolotherapy is a totally legitimate procedure that is gaining acceptance. My wife's prolotherapy is being covered by workers' comp. Why, becuae it was deemed to be "medically necessary". Why is it necessary? Other than joint fusion, prolotherapy is about the only option to move a joint from failure to function that is not radically expensive.

Good luck!!! Park

By Karin on Tuesday, October 02, 2001 - 09:26 pm:

I wish I could explain your reply as well as you
do. Even after 5 injections....feeling so much
better, I still have 1 or 2 joints pop out?
Since all my joints are connected (It's like a
domino effect...Chiropractors term...What ever
happens, lets say in your lower back, can effect
your upper back,neck or pelvic and other places.
That's me! I do walk and do normal household
shores but no lifting and very careful bending.

I'm not sure if you can strengthen your muscle
to the point of holding your joint together,
especially when you are older. I was told this
by a muscle builder.

I'll print this whole post and show it to my
Dr. and I'm curious to see what she has to say.

I'm very positive about "Prolotherapy" but since
it takes so long and it may never be a 100% cure, there is still doubt in my mind. On the
other hand, I don't really care, like I said
in an earlier post...one forgets how you felt
month or years before the injections.

Thanks for posting, Parks!
Karin

By Park Griffin on Friday, October 05, 2001 - 09:06 am:

Hi, Karin... Good post. I can't imagine what it must be like to have multiple joint hypermobility, one would be bad enough!

One thing to think about when it comes to muscles as they relate to joints is that when muscles atrophy and they are called upon to contract they may contract slowly or another way of calling it: the muscle does not "fire" properly.

Muscle strengthening/conditioning is one piece of the puzzle. Muscle retraining is the other. There are specific exercises that can be done to get your muscles to fire quicker. This will help your joints from sublaxing.

Yes, muscles will weaken with age, but taking a proactive approach now can mean the difference between living with limitations in your golden years and living with advanced degenerative disc disease. I wish you all the best! Park

By Karin on Friday, October 05, 2001 - 11:39 am:

I'll let you know how my progress is after
my 6th. injection...end of October.

Please, let me know how your wife is doing
too! I always enjoy your posts...so informative.

Thanks for your wishes,we all need it, Karin

Note: Going to see my daughter for 10 days,
who is expecting her 2nd.child. In April it
would have been impossible. I'm so happy, that
I can help her a little.

By bobby damone on Wednesday, August 28, 2002 - 06:53 pm:

my wife is going for prolotherapy and it is slow she has been in it for three years she has burning by the tailbone and very sensitive skin to even touch by the tailbone has anyone heard of this please let me know