By mr g on Monday, March 05, 2001 - 03:17 am:

Someone recently suggested that scar tissue formed round the vagus nerve could well be the cause of my sensory and gastro aliments , if this is the case ( and it's sounds convincing considering the connection ) then I wonder if there's any guarantee this won't happen again and if so how I can avoid it getting if i am to get prolotherapy. Vagus
nerve comes down the sides of your neck and extends into the abdominal
viscera controlling the function of many organs.


I'd be interested to hear other's thoughts on this.

By Park Griffin on Tuesday, March 06, 2001 - 10:42 am:

How bad are your GI episodes? GI disturbances are common w/ prolotherapy no matter where it is being done. There are no citations suggesting any organ damage from prolotherapy ( especially the solutions that are used today). There is a clash between some doctors that prolotherapy promotes the formation of fibroblasts which leads to permanent tissue formation -VS- scar tissue formation, which only leads to temporary relief until the scar tissue is reabsorbed into the body. If it turns out that the latter is correct the kind of scar tissue that would be formed would not make permanent attachments inside the body and any disturbances would be temporary. The only thing I would be concerned about is the needle placement during the injections. Especially if this area is not a primary prolo site and if your doc does not treat many people in theis area.

By Lucy on Wednesday, March 07, 2001 - 09:56 am:

Park,

Could you please clarify the two kinds of tissue formation for me? I have had prolo on my SI joints, with the assurance that any prolo would not "undo" itself. However, after 5 sessions (about 30 odd injections)every 2-3 weeks, and very severe reactions - spasms, unbelievable pain - my D.O. suggested taking a break and he injected some antinflammatory solution to calm things down. He suggested I take a break while things settled. I asked him if any of the "good" that had been done (although I have not felt any benefits at all) would be "undone" by the interruption in the treatment. He said it would not. However, I have not had any treatment for 6 weeks and can hear and feel tearing and have severe pain around my SI joints. I am going to the Mayo Clinic tomorrow to see what they say but would be grateful for any clarification on the tissue aspect. I have wondered about the scarring, since EDS patients do not scar well (I have spreading scars from previous operations) and I wonder if this applies to internal scarring too? I look forward to your response. Many thanks, Lucy. P.S. My D.O. has an excellent reputation.

By mr g on Wednesday, March 07, 2001 - 01:38 pm:

How bad are your GI episodes?

well to cut a long story short BAD .. i could not drink water without throwing up , and
i was burping every 2 seconds to the point of exhaustion ..


GI disturbances are common w/ prolotherapy no matter where it is being done.

Well thats new to me , i was told there was no risks.

There are no citations suggesting any organ damage from prolotherapy ( especially the solutions that are used today). There is a clash between some doctors that prolotherapy promotes the formation of fibroblasts which leads to permanent tissue formation -VS- scar tissue formation, which only leads to temporary relief until the scar tissue is reabsorbed into the body. If it turns out that the latter is correct the kind of scar tissue that would be formed would not make permanent attachments inside the body and any disturbances would be temporary. The only thing I would be concerned about is the needle placement during the injections. Especially if this area is not a primary prolo site and if your doc does not treat many people in theis area.

well i went to hauser who unless i'm misformed is one of the best, i wrote to them about this in regards to my question about scar tissue and they said it was unlikely becauseProlotherapy has never been known to cause scar tissue.

They also said that because Prolotherapy is given at the ligament - bone junction, where the needle is touching the bone during the injections. It does not "travel" to other areas, such as the vagus nerve, etc.

if this is the case then is it as you indicate because the injections are not adminstered properly , or is it something else ?

I had no problems until my prolotherpay and since then i have had both gasritis and peripherla neurpathy ...

never had ANY problems wiht my legs or stomach before this ...

Some one suggested it coudl be mal absorption but i have numerous blood tests etc

i'm sorry to hear about your problems Lucy , Hauser did help me but I am just worried at what cost

I have tried every herbal remedy I can with this and after year of living hell
I am still having a lot of problems and pains ontop of the problem i originally went to see Hauser about .

Despite the small difference persoanlly I know it sure as hell wasn;t worth what i have now .

By the way Lucy do you mind me asking who you went to see ?

By Lucy on Friday, March 09, 2001 - 06:41 am:

I went to see Dr. Radbill in Wellesley, Massachusettes - I really liked him, but still don't feel better. I have since moved to Minnesota and had the most terrible experience yesterday when I went to the Mayo Clinic for a second (actually probably about 11th) opinion. They had no clue as to what prolo was and, even worse, had no experience of treating EDS. I too have had some GI episodes - initially I put it down to the drugs I am taking (vicodin, percocet, valium) and this seemed reasonable, but I am beginning to wonder. I lost alot of weight while I was going through prolo.

My quandry is whether to just have my SI joint fused surgically - I can't take much more of this pain and really want it out of the way - I don't know that I can face more agonizing prolo for an indefinite period of time. Does anyone have any suggestions?

Frustrated - Lucy

By Christine on Friday, March 09, 2001 - 07:54 am:

Hi, I travelled from Australia to recieve prolo from Dr Hauser. I could only stay for 2 treatments and have since received follow up treatments from a doctor in Oz. I just finished my second set of treatments with this doctor and during this set I experienced GI upsets for the first time with prolo. It has since subsided. I put it down to the stress the treatment caused on my body - this doctor has a very painful technique and does not use demarol or any sedatives. But obviously yours is not that because it is continuing...I'm sorry I wish I could help you with an answer.

About scar tissue versus permanent tissue formation... my understanding was that scar tissue forms if the joint is immobilised. So to me it seems possible that scar tissue could form after prolo, but only if you did not move that area at all.

I am interested if anyone has any other stories about prolo not working or causing problems. Someone said that it can take 30 treatments...is this true?! I am considering visiting Dr Hauser again as the doctor here costs the same but is not as good and SOO painful I can't bear the treatment, whereas I found Dr Hauser's technique (+ the blissful Demarol :) ) very tolerable.

Christine

By mr g on Friday, March 09, 2001 - 12:16 pm:

i don;t know if this is of any intertest but i've been exploring EMS machines as an alternative to prolo , you can read about in , " alternative therpaies " section

some of the links i have there describe very radical things like the rife machine but it might be of interest .

By Christine on Monday, March 12, 2001 - 02:34 am:

mr g

Have you got a good PT, osteopath, chiropractor or acupuncturist who knows about the interaction between organs and musculoskeletal function?

My experience is that when something starts to work a bit more normally after being abnormal for so long, I get pain in the surrounding areas which had adjusted to the abnormal way of functioning and compensated somehow.

For example, today I was able to do some abdominal ex's for the first time in ages, due to my back being less painful from prolo. It felt good to contract my abs, yet I got sharp pains through my ribs and around my back, like a nerve pain, which passed. It felt like things had been stuck in the wrong place for ages, or have not been working, and that the pain was like things being forced to wake up again. My osteo explained this to me once when I had something similar, but I can't remember the physiological explanation. Perhaps something similar is happening to you on a much larger scale with your nerve pain. Maybe I am way off but I thought I'd suggest it because if this is your problem there are people who can help.

Along the same lines, musculoskeletal changes can affect the functioning of the organs. Organs can physically shift a bit, especially if the surrounding structures are abnormal. I know osteos can sometimes 'shift back' an organ that has moved a bit. I've heard accounts where people have had awful stomach problems and by physically pushing the stomach over, an osteo has cured them. It's possible if your posture and joints were previously inclined a certain way and then their position is changed with prolo, if you had a 'shifted' stomach something is now pushing on it.

I apologise for my amateurish explanations. I suggest you at least seek at someone who knows about these connections...even if I am wrong in my theories (quite likely :) ), I think it's important for anyone with problems to see someone like I described, as often there is a 'positional'
cause of a seemingly internal problem, and doctors have nooo idea. I think maybe people who list myofascial release and visceral work as skills could be good. I also mentioned an acupuncturist because sometimes they are good with weird symptoms.

By Park Griffin on Friday, March 23, 2001 - 09:19 am:

Lucy, visit WEBMD website. They have started gathering information about prolotherapy. They have professional responses from doctors on both sides of the fence. One doctor might say that it is scar tissue that is forming and not lasting healthy tissue and vica-versa. Guess what? their is no proof that it is scar tissue or healthy tissue. The bottom line is that any doctor's opinion on the mechanism behind the success or failure of prolotherapy is only an educated guess.

Mr g. The common complaints of GI disturbances are way less severe than you are stating. A little bloating or heartburn (which goes a way in a few days is the norm).

By Park Griffin on Friday, March 23, 2001 - 09:22 am:

Lucy, visit the website: www.delphi.com/sijd/start there are many people who have had SI fusion who post there and would be glad to answer any questions that you have.

By mr g on Friday, March 23, 2001 - 10:47 am:

Hello Park ,

I had a look at your site unfortunately it won't let me resgister as a member , I did find it very interesting though and was wanted to ask you what kind of , "new " solution it was that your wife was given ?

By deana on Monday, March 26, 2001 - 09:30 am:

Lucy - I apologize in advance if my posting
is posted 2x (I was having difficulty with
my computer). I am sorry to hear that you are
having so many complications to your Prolo.
I am a Boston resident and as you are probaly
already aware Dr. Radbill is the only Dr. in
this city who does Prolo. No one at Brigham's,
Mass General, or New England Baptist (Nationaly
knwon and accrediated joint/back center either
does or endorses Prolo). This of course made me
a bit nervous, however, I do not have a choice
prepared to move forward with Radbill until I
read your posting. Now I am considering
either expanding my search to Dr.s in other
cities.

This is my story:
A little over a month ago I was finaly diagnosed with SI joint hypermobility with severe referred
nerve pain from both my joint, piriformis
muscle, and oddly enough at times from L3, L4,
and L5. Although MRI's have revealed no true
disk herniation of my back the SI joint
misalignment has been enough to totaly allow
everything to "short-circuit".

All of this was been a result of an athletic-
related injury from 9/00 when I orinaly "locked"
up the right SI joint. From that point on I
ran from Dr. to Dr. with no explanation of the
pain until about 1.5 months ago. Since I finaly
have a diagnosis here -- my search for treatment
has been just as frustrating. I've tried
chiropracitic (which I suspect the forceful
manipulations may have only made the
situation works) he attempted to "unlock" the
joint, perhaps causing overall hypermobility
of now both the right and the left joint. I've
also tried traditional medicane and physical
therapy to stablize things. Last week had bilateral joint and right piriformis cortisone
injections to help "mask" the pain -- found
it only minimumly helpful if that. Am on Neurontin and a host of pain-killers and
anit-inflamatories. NOTHING works to ease the pain -- most of all nothing is a solution. I am only 30 years old and up until 6 months ago was an active runner and lived an extremely active lifestyle. At this time I can not even walk to blocks without extreme
referred nerve pain. Prolo seems the only way short of surgery to fuse the joints back together.

Can you please tell me more about your experience
with Radbill. Did he use the arthagram that
Park spoke about in previous postings? or did he
just assume he knew where to inject into the
ligament? Has he been able to tell you when
the procedure has failed more importantly why
you are experiencing so many other complications
since the therapy? Just prior to finding this
website I coincidently just gotten off the phone
with his office this morning and set a consultation with him for 4/9. Now reluctant
to move forward. I did however quickly quiz his
assistant who answered the phone. She told me
at least 50% of his patients were SI joint, he has
a 85% success rate, and has been doing this for 14 years. Is this consistent to what you had been
told? Also, she told me that before moving
forward with procedures they would be more than
happy to have me speak with patients of his who
have benefited.

I am terribly sorry that you are still experiences
pain. However, I hope it brings you a little peace to know that you might have saved someone
else from moving with the same result.

Please enlighten me in any way you can with this
situation. Also, if anyone else can contribute please do so. Lastly, does anyone know anyone
directly who has had prolo to SI and it has
been 100% successful? I'm starting to get concered if this is the reason insurance companies
do not pay for this and if this is why there are
not many Dr's performing this.

Best Regards, Deana
email directly: deanak29@hotmail.com

By Eppie on Monday, March 26, 2001 - 02:04 pm:

Deana,

As a former distance runner, I understand your anxiety. As one who has seen numerous doctors to no avail, I understand your frustration. After the birth of my son almost two years ago, my body literally fell apart at the joints (all within 2 months...very scary). Anyway, I literally had to hold my SI and hips together with an SI belt, and was bed-ridden for almost 3 months. I started prolotherapy last March, and have had six rounds thus far (all major joints). Last month I completed a "difficult" 6.5-mile hike in Hawaii with minimal pain. I have a ways to go, but the point is I've come a long way (my SI is probably 80%, and I'm shooting for 100%).

I currently travel to Dr. Mark Wheaton in Minnesota (I live in Alaska). He is VERY good (wheatons.com). I see him again April 6 and will ask if he could recommend someone in your area or the northeast.

Let me know if you have specific prolo-SI questions (i.e., what to expect, etc.).

Eppie

By deana on Tuesday, March 27, 2001 - 03:29 pm:

Eppie - Thank you so much for your encouranging information! It sounds like you are doing well
and that prolo does and can work. With that in
mind - I will plan continue my plan to have
prolo.

If your Dr. can recommend anyone that would be
great. Although I was displeased to hear that
Lucy had such a unpleasent experience with Radbill - I've done some homework on him and he is really
well respected Prolotherapist who has been doing
this for many years. I think Lucy might be the
exception to the case. I will plan to consult
with him on 4/9. But would like to meet with
at least one other before I decide who should
do the treatments.

....as far as the treatment it would be so helpful
if you could provide as much info as possible to
me. Very painful? How long did it take before
you started to feel relief? Did your doctor
"manipulate" your alignment before/after he
injected (like a chirpractor would)? Any and all
info is much appreciated!

Congratulations on the birth of your son and glad
to hear that you are in better medical condition.
6.5 mile hike .... what I wouldn't do to be able
to do that right now. Have you been able to run
since the Prolo treatments?

- Deana

By Lucy on Wednesday, March 28, 2001 - 11:14 am:

Hi Deana,

First, I want to make it clear that my experience with Dr. Radbill was not bad - he himself is an excellent doctor, an attentive healer, and is the first doctor in the 7 years that I've been going through this with that really paid attention to me. My concern lies with prolotherapy, whoever performs it. If you decide to go ahead with it, I would definitely suggest that you see him.

I recently moved to the midwest and saw Dr. Wheaton a couple of weeks ago for a consultation. He too is an excellent doctor.

My concern with prolo, is that I hear so many different "variants" on how the tissue builds up again - is it "scar" tissue that it creates or does it really create the fibroblasts which reinforce the collagen. If it's scar tissue, then eventually it becomes reabsorbed by the body. There doesn't seem to be a definitive answer to this, which is why insurance doesn't cover the treatment - as far as I understand it. If someone could shed some light on this for me it would be wonderful. I'm in limbo right now, not sure of how to proceed. Dr. Radbill was injecting my SI joints, Dr. Wheaton said I needed my whole back done - naturally, with the pain that prolo involves, I want to be certain that I'm moving ahead with the right decision. I haven't yet felt the benefits of reduced pain that many of you have written about and I don't know why. Thank you all for your input. Take care - Lucy

By Lucy on Wednesday, March 28, 2001 - 11:18 am:

Deana,

Dr. Radbill does not use xray to perform the procedure. He does do some minimal manipulation to make sure that the body is alligned correctly for the injection. The procedure was uncomfortable for me but the injections don't last more than a few minutes so it's "bearable"!!

By Christine on Thursday, March 29, 2001 - 01:35 am:

How come people say there is no answer as to whether it is scar tissue or fibroblasts? I read about a couple of studies where it was shown that the tissue was strong collagen and were able to measure the increase in the connective tissue. A doctor in Australia told me Dr Thomas Dorman was the one to measure this increase

By mr g on Thursday, March 29, 2001 - 04:16 am:

well i must confess none of what i've heard here or read does much to affirm any confidence
i was planning to go to faber but whats the point
if i'm paying more money to get soemthing that will be less expensive and more effective if i leaveit longer

i really dont; know what to think but i am not rich and i do not want to go to another docotor like hauser who gives me 2 added health problems and 1 year of hell

i phoned faber and no one there could tell me why their method of more injections is so effective
so does this mean thier hiding something and if not then why not tell me ?

what is there to hide ?

and this is not just faber but others too who are less than happy abotu discussing their details
for fear they'll discredit their peers

and if this is the case why does each one of them like hauser proudly proclaim their method like it is the answer ?

i have no doubt prolo helps but who or where you should you go to get it , who is geuine and who is a charlatan

why is there two different fractions ?

why does one guy say stuff yourself with proteins
and the other eat a reg diet

this is what worries me

how can there be such diverese opnion in what is essentially the same treatment ?

By Ed on Thursday, March 29, 2001 - 05:26 am:

Lucy
In a biopsy study done by Dorman and Klein in 1989, histology demonstrated the formation of natural healthy ligament tissue. There was no dysfunctional scar tissue. I have a copy of the study. Also keep in mind that Wheaton uses the Hacket, Hemwell, Hauser technique in which they inject more areas.
Lucy how trustworthy is Radbill, and how often did he inject you.
Ed

By Lucy on Thursday, March 29, 2001 - 08:46 am:

Hi Ed,

Thanks - could you let me know where I could find a copy of this study. Why is this study not broadly known?

Dr. Radbill is 200% trustworthy. I had five sessions with him - about 30-40 shots. The only reason I stopped going to him was that I moved to a different State. If I had stayed in Massachusettes I would have continued to be treated by him without a doubt. My concern is not about Dr. Radbill, it's about the truth behind prolotherapy.

Lucy

By mr G on Thursday, March 29, 2001 - 11:09 am:

You know it would be interesting to have an opnion of each doctor everyones been to and for what condition so we could compare.

Is there any doctors for example who is more effective in certain areas than others ?

None of them really say

By Ed on Thursday, March 29, 2001 - 12:55 pm:

Lucy
The name of the article is:
Histological changes of injected ligaments and objective measurements of lumbar spine mobility before and after treatment.
The study is in a book called: The Human Pelvis and the Use of Prolotherapy by Thomas Dorman MD, 1994. I got the book from Dr. Dorman. He has a website at www.dormanpub.com

Ed

By Gretchen on Monday, May 14, 2001 - 03:56 pm:

Dr. Radbil is my Do. I travel from Ct. to Mass. to see him. After years of misdiagnosis he figured out what my problem was quickly and gave me real pain relief through medication. I stopped counting a long time ago how many seperate injection sights per visit. (I have been seeing him for about a year and a half) Some visits are more painful than others. There are several different agents he can use, some cause stronger reactions than others. Many times I can drive the hour trip home and others I am greatful that I have my husband with me, there are still others where I can hardly walk for days. Each patient will react differently. I still wear an SI belt to help support my back. I wish I had that durring my two pregnancys.
He has treated both of my grandparents as well. Every once and a while they go in to have their backs tightened up. This relieves their pain for a long time. At 85 my grandfather is extreemly active.
I could keep writing about my experience with him for a long time. Needless to say I can now sleep, feel my feet, wake up pain free some days. I am able to chase my boys, climb mountians and help take care of my Grandparents. The time it has taken to get better is due to the amount of hypermobility I experience and how long it took me to try prolotherapy. Had I gone to him before all the other doctors and physical therapists made my condition worse I would probably be pain free by now. Surgery would correct the degenerative disc, but the ligaments that hold them tight would still be to loose to support the structures in the spine and I would still experience pain.


Gret

By Lucy on Tuesday, May 15, 2001 - 10:01 am:

I just returned from the UK where I saw Prof. Grahame for a consultation. He says there are no conclusive studies that prove prolo actually does anything at all. However, his clinic will be conducting some trials in the near future. He is dubious as to the effects of prolo, but also told me that it couldn't do any harm. What interested me too was that, where I have repeatedly been diagnosed with SI joint disfuntion here in the US, he actually found a joint abnormaility in my lumbar vertibrae and found nothing radialogically wrong with my SI joints. Could we be barking up the wrong tree? I'm just putting this out there, because there is controversy about SI joint disfuntion and prolo and I am beginning to wonder what the truth is. Looking forward to your comments - thanks, Lucy

By Ed on Tuesday, May 15, 2001 - 11:03 am:

Hi Gretchen
Enjoyed reading your post and hearing about your improvement. I am also planning to travel from CT to Mass to see Dr. Radbill. However, at present i do not have a lot of confidence in him. Would love to hear more about your experiences and the different agents you talked about. He tells me that he is now using dextrose and sarafin, whereas before he used P2G. Does he hit your tender spots with his needle. I am told that is suppose to be key.
Thank-you and continued success, Ed

By Park Griffin on Wednesday, May 16, 2001 - 11:56 am:

Lucy, there is a semi-retired SI Joint researcher that is answering questions and giving advice on a web forum. His name is Richard Dontigny.

He can be found at: www.delphi.com/sijd/start

He will be able to answer your questions.

By Joseph Renken on Saturday, June 16, 2001 - 04:31 pm:

I was diagnosed with HMS on 2-21-01. It was a HUGE shock for a 27 year old active man to be told NO MORE SPORTS. I was active in slow pitch softball, basketball, bowling, distance running, and football. I was the weird one in school that could put both legs behind my head and dislocate my shoulder as a joke...Mel Gibson trick from Lethal Weapon; and clicking my ankles, toes, & fingers. In 1990 I was playing right field and threw the ball home. My shoulder dislocated so bad that the emt's at school thought that I broke my collar bone. I went to the er and rotated my arm for the technician and she heard the pop behind her radiation shield. Of course the x-ray showed nothing. Later I joined the submarine navy in 1994 and while performing maintenance with air powered chisels felt my shoulder "loosening". Two weeks later my shoulder dislocated while out to sea. I went to my corpman and the shoulder was approx 6" lower than the right. He tried 5 different methods to put it back into place. I had them all talking about me because one session he had me lie on my stomach with the bad arm laying over the bench. He tied a 5 pound weight to my wrist and waited. The weight started about 5 inches above the floor. 30 minutes later it touched the floor and he was just shaking his head. Obviously I was discharged and the naval doctors on shore gave me a arthogram procedure which showed no tears in my rotator cuff. With that evidence and the range of education about this problem, I was diagnosed with bursitis. In 1997 I was hired in the U.S. Post Office and had a sit down job typing so my shoulders and hips for the most part had controled pain lapses. I was still able to predict the weather by pressure changes. I bid what I thought would be a better job for hours and days off matters but it was a job that used my shoulders and we sat on chairs that in all reality made you stand up. So obviously my symptoms got worse. Once again I bid a different job for days off and hour reasons. It was a job that I thought was the easiest one in the post office...custodian. Man was I wrong. The constant walking and standing has reaked havic on my hips and the rotating of my shoulders to clean windows, toliets, mirrors, and floors have done me in.
I went to my family physician and he gave me a cortizone shot with vioxx 25mg. At this point he diagnosed me with bursitis/tendonitis and told me to come back in 2 weeks for another shot. The cortizone really didn't do any good except pain from the shot. I went back to him in two days because of side effects from the vioxx and all he did was halve the dosage. Upset at that I called an orthopedic surgeon in Columbia, MO. She diagnosed me with HMS and told me that practically EVERY joint I have hyperextends. She had me bend forward at the hip and told me that I was actually bending from my back and not the hip. She proceeded to tell me that "You have no but!" I went to pt 3x a week and was changed to celebrex 200mg. The thing that bothers me about the pt is that my left leg acts like a rubber band while performing leg lifts. I do 30 lifts forward, side, and backwards. When I get to 20 though, my leg progressively loses its ROM until it only goes a few inches forward, side, or back. Not only that but when I'm done with the excersize I HAVE TO TWIST MY LEG AS TO POP IT! I had to suppliment the celebrex with tynenol 3/codine to ease the pain. I was off work for 6 weeks and my boss was going around saying that I paid off the doctors to write a bogus condition. Both my pt and ortho told me that I could try the firefighting physical exam when it was given in march and I paid for it. While working this month I was walking to my next room to clean and the same hip popped out spontaniously. Now I am on relefin 750mg and still supplimenting with the codine. My job claims that they don't have something to suppliment my disability. The doctor only said that I had to sit 75% of the time while working with no stairs or ladders. I filed an EEO complaint against them. I haven't had a paycheck because I am waiting for the workmans comp to be approved.
My plite is this...the pt and drugs aren't working. The Mayo clinic's web site didn't have anything on this condition so I don't know who to go to for help in the midwest.

By Lucy on Thursday, June 21, 2001 - 06:52 am:

Hi Joseph,

I know just how you feel. I was diagnosed with HMS (also known as Ehlers-Danlos Syndrome Type III) about 12 years ago. I recently had to stop work because of it and am now going through the same long drawn-out disability claims which means that I've gone without a paycheck for months!

DON'T go to the Mayo clinic. I went in January and they were worse than useless and all I have to show for it is a huge bill. Their specialists in rheumatology don't know about this disorder. I live in St. Paul and have had one consultation with Dr. Wheaton who is a physical rehabilitation specialist based in Minnetonka. He treats alot of people with HMS. He does tend towards prolotherapy which I have tried in the past (with another doctor) - many people have felt tremendous benefits from prolo, although it didn't work for me. However, Dr. Wheaton I am sure, has other options if prolo is not right for you. You can find him on the internet at Wheatons.com. I hope this is helpful - I haven't been able to find anyone else in the midwest who knows how to help! Let me know if you do. Take care and KEEP SMILING. Lucy

By Anne on Sunday, June 24, 2001 - 11:10 am:

I was finally dx'd with hypermobility appx. 2.5 years ago; it was an amazing physical therapist who actually told me what I had, after putting me through various ROM tests for all of 5-8 minutes. All of the doctors I'd been seeing for the 6.5 years before that told me I had fibromyalgia (if they really believed I had anything other than a penchant for sympathy and medication). I remember, as a child, bending to pick something up and feeling a sudden, sharp shooting pain across my low back. It wasn't frequent, but it happened enough to make me learn to bend at the knees. I've been extremely active since high school, I ran cross country, worked out with free weights, etc; and I believe that my youth and good physical condition controlled my symptoms for many years. After the birth of my first child 8 years ago, I began to experience an increase in symptoms. Now I am 31, and I have pain every day. I have muscle spasms from my C- to L-spine, nerve pain in my lumbar, and pain throughout my lower extremities. My right hip aches, and my knees pop and give me pain at times. I feel much older than I am most of the time.
My orthopedist has generally been very good about treating my pain and offering advice for therapies; however, it seems that every time I call in for refills on my meds, he doesn't respond for weeks, sometimes even a month or more. I end up with a yo-yo effect; never really managing to stay on top of the pain, always trying to bring it back under control. Sometimes I almost begin to believe, myself, that I am a bit of a hypochondriac; as I see reflected in the eyes of the pharmacy employees dispensing my medications. They see a young person picking up Demerol or Vicodin, they see that you just had a script filled 4-6 weeks ago; and you can imagine what they are thinking.
A nurse friend of mine I worked with commented on one of my patients who routinely called for refills of pain meds; she called the patient a "drug addict". I asked her if she had ever had more than 3 consecutive days of pain in her life. She was recovering from a recent low back strain, (she was wearing my TENS that day); and she admitted that if she had to live with that level of pain every day for the rest of her life, she would take narcotics, too.
There's such a misconception surrounding patients with chronic pain. It's as if people really believe that we enjoy the dry mouth, constipation, lightheadedness, disorientation, nausea, and various other side effects of the meds (that in reality, barely touch the actual pain) so much that we fabricate ailments in order to keep the supply coming. I would love to be able to give them up if for no other reason than to avoid the shame and embarrassment I feel every time I have to leave a message with the office staff stating which drugs I need refilled; and every time I have to show I.D. and sign the line in order to pick them up. I cannot even imagine anymore what it would feel like to wake up feeling good...what a day---24 hours---without pain would be like.

By tet on Sunday, August 19, 2001 - 02:47 pm:

Dear people,
What on earth is prolotherapy?!
I live in the Netherlands and have never heard of it.Neither on the Dutch Hypermobility Platform (which I recently discoverded, like your platform, great).
TET

By Marg on Monday, August 20, 2001 - 06:54 am:

Hi Tet, I am from the Netherlands too, we don't have prolo around here... You (tet) can mail me if you want... There is a Dutch patientsupport group aswell, as a part of it we write eachother emails on various topics related too hypermobility, in Dutch. I find this 'rondschrijflijst' very friendly and helpfull. There you can learn from eachothers experiences and I feel very much understood there.

Marg

By Park Griffin on Monday, August 20, 2001 - 01:02 pm:

Tet, the purpose of prolotherapy is to tighten and shorten stretched ligaments. Typically, ligaments once stretched don't heal themselves. Researchers in the 1950's asked the question: Why is it that certain animals can grow back complete limbs, but the human body can not repair a damaged ligament. The researchers discovered that there is not much blood supply into the area and this would not allow healing to take place. These researchers already knew that the body can make new blood pathways to injured areas which sets up the conditions for natural healing and regeneration to occur. The researchers decided to give injections of a benign solution right at the bone ligament junction and see what happened. Well, the solution caused localized irritation which the body considers to be a point of injury. The body responds by laying down more blood flow to the area. This new "wellspring of blood" carries all the appropriate biochemical compounds into the injection site that are needed for natural healing. My wife has had 12 monthly sessions of prolo so far and it works!!! Her SI joint was so hypermobile that she could not do any exercises that would strengthen the surrounding area to help the hypermobile area. She is about at the point where her ligaments are as healed as they will get. She can now tolerate PT and exercise training which has also helped her hypermobile SI joint. She suffered w/ SI Joint problems for 4 years before trying prolotherapy.

By the way, prolo is short for proliferation. Prolo-therapy (proliferation of blood vessels and tissue cells to a specific area). Park

By TET on Wednesday, August 22, 2001 - 01:18 pm:

Park en Marq, thanks for your reply.
Prolotherapy sounds scary to me. I'll ask my fysiotherapist if he knows something about it in the Netherlands.
But Marq, maybe you can tell me.

I cant get ón the "rondschrijflijst",if its the same as the newsgroep of the Dutch hyp.organisation, because you have to have a Yahoo-account.

By marg on Thursday, August 23, 2001 - 04:27 am:

No it is not the same thing, I mean the list you can find at http://www.geocities.com/hmsnederland/rond.html

never mind the stuff about regions... They never went on with that, it is still one list for the whole of the netherlands

By Karin on Friday, August 24, 2001 - 09:04 pm:

Just happend to find this forum. Yes, there is
also a Dr. in Germany (Dr. Sigmund Halter)
(Schwarzwald....Black Forest) Website is called..
Ganzheitliche Orthopaedische Medezin.
http://www.marktplatz-cw.de/ghorthmeds-prolo.htm

Hope, I spelled it right.

I go to Dr. Alderman, Glendale, CA. Her place is
called "Hemwall Family Medical Center"

Had 3 treatments so far, and I'm doing a lot
better. It's not perfect but the way I felt in
April....what a differents. I read every post
in this forum and had none of the problems,
mentioned in this forum. Scared me a bit.
The treatments are every 4 weeks but I actually
forget what kind of injection she is using.
Good luck everyone!

:) Karin