A Question of Trust

Hypermobility Forum for people with Marfan, EDS: prolotherapy: A Question of Trust
Top of pagePrevious messageNext messageBottom of pageLink to this message   By Vinny on Thursday, February 20, 2003 - 11:11 am:

I'm new here , but one thing that I have noticed is that there is not really any mention of just how valid these solutions they claim to use are.

For example is there any proof the solutions they're making are controlled or even what they claim to be, or do they get them pre-made by some
elusive foreign pharmacy company that are not permitted to talk ?

Also judging from this board and the lack of interest it seems that the original excitement about this therapy has long since diminshed and any signs of the treatment fufilling it's claims are purely subjective at best .

Vincent

Top of pagePrevious messageNext messageBottom of pageLink to this message   By hoops on Sunday, February 23, 2003 - 07:20 am:

Vinny,
The problem is that the Dr. is not very informative about what they are using. I have to continually ask the assistants what is in the solution. I found out from the website that many people had no luck with the dextrose solution. I have had 11 months worth of injections and no luck. Now from this website it looks like a few people say that the Sodium Morruate may work faster but it is like starting over. I don't know why the doctor does not determine how much pain the person is in to determine what solution to use. I am so upset that I did not find this website about five months ago. Either way I would know by now.

Top of pagePrevious messageNext messageBottom of pageLink to this message   By Vinny on Sunday, February 23, 2003 - 03:11 pm:

Well a few people I know have tried it with different doctors , and they had said different things most not very good in the sense they feel that it's erratic at best .

What I have problem with is who these doctors answer to if they screw up , it's all very well that they can make mistakes but I have read and heard of folk having soem real problems as result that teh doctor is not taking responsbility for .

Usually if this was normal doctor or even alternative practioner there would be some sort of council that was responsible for their actions
but when they're not , then what??

I was also told that they usually make you sign agreement as safeguard against their actions as well which is something I have never come across yet with any doctor or alternative practioner .

As far as what they say, well they could tell you anything and how would you know ?

As far as I can see the only board is the doctors themselves who have meetings ,and pratice on each other which to seems all very convienient given they're all in the business together.

My friends had morruhate and agree it works better, but it also a high risk of overtightening the joints too if used in too high amount.

May I ask whom you've been seeing?

Regards

Vincent

Top of pagePrevious messageNext messageBottom of pageLink to this message   By hoops on Monday, February 24, 2003 - 06:51 am:

Vincent,
For me the dextrose solution is a waste. I will make sure it is not used in high amounts. I am hoping I will only require 5-7 injections of the morruhate. A couple people said they felt better with only two sessions of morruhate. One said it took seven. I am using a person in Chicago that wrote several books (I rather not say his name). Who are you using? It was suggested that you use someone that does fluroscopy by Silvia, however, I cannot find anyone in my area that uses it. I travel 400 miles presently and it is difficult if you are in pain. Did any of your friends have success? I talked to at least 10 people on the doctors referral list that were cured. I became very disappointed when I read some of the stuff on this website.

Top of pagePrevious messageNext messageBottom of pageLink to this message   By Karin on Tuesday, February 25, 2003 - 10:21 am:

Maybe I was doomed anyway or it was a natural
change of my joints but as of this moment my
joints have changed to the point of being very
ridged/tight. My doctor used the dextrose solution
and I had about 13 injection over a period of
more than a year.

She injected my whole back and I learned later that this was a very bad decision I had made.
Through this pain ordeal from the change I wasn't
sure if I wanted more injections and she was
holding the syringe and said, "Do you wanted or
not." I've never forgotten her words.I think, it
was all about money. Everytime I went, it cost me
around $250.00-$300.00 She also barely looked at
my x-rays and there is more. I could go on and on
about the problems I had. I think, they've no clue
what the after effect are going to be and where
it would all lead.

There is a doctor here in LA, CA, who uses
fluoroscopy. Can't remember the name but you'll
find it in the directory of all those prolo
websites. He has a big office incl. partners who
specializing in back problems. I never checked him
out because I'm done with prolo injections because
for me it did not eliminate my pain, just the
opposite.

I hope, others will have more luck.

Top of pagePrevious messageNext messageBottom of pageLink to this message   By hoops on Wednesday, February 26, 2003 - 12:03 pm:

Karin,
I believe that the dextrose solution alone is not the way to go. It causes inflammation and not enough stabilization. So they drag it out. A person probably only requires 5 sm injections and that way the inflammation is not as bad and not over a long period of time. Right now I am giving up for awhile. I wish I had just tried the sm solution a few times. If that does not work than it is not the treatment for what you have. I am between a rock and a hard place now but have too much inflammation to continue.

Top of pagePrevious messageNext messageBottom of pageLink to this message   By Vinny on Wednesday, February 26, 2003 - 06:07 pm:

Hoops,

My friends did have some promising success until their joints got overtightened.

It isn't my place to say if this could be cosidered a success because it did help stablsie areas that were loose , but at the expense of having other problems like the above.

According to one Doctor called Hauser , using Fluoroscopy is soemething that is done for trainees and therefore could be argued not the best way of trusting your doctors skills, but anything is worth a try.

There was someone I heard who used fluoroscopy in Denver or somewhere like that but that was a while back , most of the recognizable doctors don't seem to use it .

There are other solutions too other than dextrose or sm , and the reason I mention this is because I noted that I seemed to start becoming tolerant to the solutions used so they were not having the same effect. This is not something I've heard from others but it seems resonable to assume that over time this sort of thing could happen if your body gets exposed to same conditions over again.

The only other answer to the problem of cost and trust is too somehow find a way of getting to your own body better and what helps it.

There is one guy I know who is so sick of things he's even contemplating injecting himself because he's losing money all the time through their screw ups .

Myself.. well I stopped some time ago, unless things get messy i try to avoid getting shots because of the cost / travel and the unkown factor of not really knowing what to expect.

By the way it sounds like saw the same doc as you !

take care,

Vincent

Top of pagePrevious messageNext messageBottom of pageLink to this message   By hoops on Thursday, February 27, 2003 - 07:30 am:

Vinny,
I had no success with my doctor. I am afraid to go back to him so I am going to look into someone locally. I believe in my case he should have done nerve blocks at the same time he did the injections. He never examines you. I feel like he could be injecting the wrong areas. One guy said it took three proltherapists before he got better. This guy is definitely in it for the money.

Did your friends use too high of a percentage of sodium morruate? How many times did they go? Please let me know as I am considering this as one of my last options and want to know everything before I decide to do it.

Top of pagePrevious messageNext messageBottom of pageLink to this message   By Vinny on Saturday, March 01, 2003 - 05:50 am:

Hoops,

The highest I amount of sm used was 2.5 I think, bu mostly it was 2cc and they varied one of them going easily over 30 times ( that includes trying to correct overtightening )

I think your right in trying to get a good examination of which areas need done , from what I've learned injecting those , "wrong areas " is a big part of the problem and why a lot of the folk I've talked too seem to think their treatment went downhill.

If it was just the strength of the injection it would be lot more straighforward but I do not think a lot of those doctos know the body well enough to just inject and expect the joints to align perfectly, though I have heard other top practioners say just that.

If you can I'd try and look into a good PT or someone else to get 2nd opinion .

P.S. Try and search through archives I think there are some joints mentioned that people specifically say not to get done illeolumbar seem to come to mind.

Vincent

Top of pagePrevious messageNext messageBottom of pageLink to this message   By hoops on Saturday, March 01, 2003 - 06:25 am:

Vinny,
There is one person that said they had no response to the sodium m which is disappointing. I would not go more than 7 times because my situtaion is a bad injury. Most of the other people had success with it if not overused. The sm was closer to the solution that Hackett used and does not act the same way as the dextrose. It attracts collagen to the area. The doctor in Chicago is scary when he starts blaming my symptons on mold vs. tendons and ligaments. That is one of the main reasons I do not want to go back and the issue that he does not examine me, even at the initial visit. A person should be examined every time. Some areas do not need to be injected. Park said if they are tight, prolo will not work. My doctor said the opposite and was injecting the tight areas.

Top of pagePrevious messageNext messageBottom of pageLink to this message   By Vinny on Saturday, March 01, 2003 - 03:33 pm:

Hoops,

I've never heard of any one not responding but one of my friends did seem to notice the solution became less effective over time ( sm )


To give the devil his due though , he seems to be one of the cheaper ones when compared to some , although like most also he does not seem to examine ...

If it the same doctor I'm thinking of the only advantage I can think of is that he will usually give you sm if you request it or tell him the dextrose did not work.

There are other doctors who use sm too but most are reluctant , well seem to be , because it's powerful stuff .

Usually from what I hear most would rather you try the weaker stuff but if you tell them your situation then perhaps they'll listen to you.

On another note I have heard that sometimes the adrenals can be behind ligament problem , so perhaps that is something else you might consider , if your problem is non localised.

Vincent

Top of pagePrevious messageNext messageBottom of pageLink to this message   By Karin on Saturday, March 01, 2003 - 09:28 pm:

Everyone is different.You also start out with not
knowing where to inject, especially when there is
no examination from the doctor. I can barely move
sometimes, so tight are my joints. It's been
almost a year, since my last injection.

Good luck everyone.

If you're interested find the doctor here in LA
through the prolo web pages. He does use floroscopy. If I'm not mistaken, his office is in
Santa Monica. A town in the LA area.

I would not go back to the doctor I used.

Top of pagePrevious messageNext messageBottom of pageLink to this message   By Vinny on Sunday, March 02, 2003 - 04:56 am:

Karin,

If it is the same doctor I'm am thinking of he might be well worth a try , however he is more expensive , the last time I checked ( EXCLUDING TRAVEL ETC )

Lou Ferringo ? ( guy who played the HULK ) went to him with success but that was for his knee I think ( correct me if I'm wrong )

If it is the same person ( Dr Darrows ) and you can afford I'd give him a shot, I almost went to himself myself but the overall cost was too high for me .

Vincent

Top of pagePrevious messageNext messageBottom of pageLink to this message   By Vinny on Sunday, March 02, 2003 - 07:03 am:

Karin,

I came across this and thought you might find it interesting because it might explain why you suffering from stiffness, perhaps if you could write to this doctor on the list he might have some advice on these " exercises " and what else you could possibly do to help your situation.

Vincent


" In order to stimulate the new growth of collagen the proliferant is injected, but in order to align the new collagen correctly with the existing ligament tissues it is very important for the structures to healin the presence of movement. This will protect the ligament from forming adhesions to neighboring structures and increase longitudinal alignment of the new collagen. You will receive written and verbal instructions for the correct exercises. These movements, which we have named exercises, are essential. Repetition of the movements ensures proper heating. As the heating process goes on for several months, it is recommended that patients continue with the exercises for at least three months after the last injection.
" - Thomas Dorman

Top of pagePrevious messageNext messageBottom of pageLink to this message   By hoops on Sunday, March 02, 2003 - 08:36 am:

Vinny,
Where Do you get the exercises? I do feel like it is still changing and want to do the appropriate exercises if it would help.

My problem was localized from the injury, but seems to be getting other areas worse. That is why I am going to get some other opinions.

If the prolo had worked should the localized pain have lessened? I still have the whiplash and localized pain that this Dr. claims a 90% cure rate.

Also, I recommend pain patches I wear them for radiating pain (they have lidocain in them) this might be something that helps short term.

Top of pagePrevious messageNext messageBottom of pageLink to this message   By Vinny on Sunday, March 02, 2003 - 03:06 pm:

Hoops,

I get the impression the exercises referred to are manual therapy or something along those lines .

If the primary joint weakens it does eventually over time affect others too through lack of support , causing muscles to tighten to compensate for it and moving other joints out of place.

Sometimes , which might be your case ( though this is just guess ) the pain might be related to another area , or in other words the weakness is not in the neck but elsewhere although it is there you are feeling the pain.

If that is that case it could explain why nothing worked , infact it may have even aggravted the problem by tightening an area that didn't need it.

The other is that the injections being dextrose were not strong enough to pull the joint in enough and you are going to perhaps need to try some exercises to see if you can alter the feeling and put the icing on the cake.

Remembering what it felt like before can be problem if it's been a long time and if this is the case then you'll probably need a physio or someone to make sure your following everything correctly.

Other than this of course he might of given you crap injections , or a fraud :P

Vincent

Top of pagePrevious messageNext messageBottom of pageLink to this message   By Karin on Sunday, March 02, 2003 - 06:07 pm:

About 5 month after my last injection I tried
Acupuncture and thought it couldn't hurt any.
Wrong! I had Acupuncture before and always
thought it was save. What I went through was not
your conventional acu.She really poked around
with the needle and at one point, I screamed so
loud because of the pain it created and all she
said was: "Oh, that was a nerve." This happened
to me twice. Needless to say, I never went back.
I'm not sure, sometimes I think she damaged the
nerve and exactly since that time Oct.24, I'm
suffering from nerve pain. I just about had it
with pain. In a couple of days I'll receive my
3rd cortisone inj. The first 2 helped a little.
I'm done with prolo and injections for a long
time.

By the way, that's the doctor (Dr. Dorrow's) I was
thinking off.

I also tried the lidoderm patches. Very expensive.
30 patches $130.00 and I got a deal. Thought they
helped a little, especially with the nerve pain.

I think I read here in the forum, that the prolo
solution will worked on you for about a year and
then you're supposed to get maintenance injection.

Overall,we've to try something in order to get rid
off the pain or be more comfortable.

Good luck to you all,
Karin

The acu. was just as painful (thoracic spine T6)
in that area, than a prolo inj.


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