Hi Bonnie,

I was asking the question with reference to:

" News Release: February 8, 2007
Polyanalgesic Consensus Panel Issues New Guidelines for Pain Management via Intraspinal Infusion"

Are you saying these new guidelines won't have any force behind them, so medics can decide for themselves how they treat patients anyway? I suppose they are only guidelines, after all, but if that's the case, what's the point of them?

I read them as being a concensus of opinion by the named doctors, with reference to recent practice and clinical results, as to the safest and most effective tools for pain management. So....well, I obviously don't know enough about the US medical system. I was assuming there would be a point to publishing these guidelines, as it applies to future treatment.

I'm confused!
all the best

Thank you for your welcome!
I was assuming there would be a point to publishing these guidelines, as it applies to future treatment.

Yes, you are right...and here's the preverbial "but"
one of the physicians listed as a contributor to the article was sitting next to me at our dinner table one evening not too long ago. We had a wonderful talk about various treatments and how it is determined which patient receives which treatment. Much of it is physical, but there is some where the mental state is taken into consideration moreso than the physical state, like Prialt for example. This physician is an advocate for Ketamine treatments. They may write or contribute to an article, but if it's a compilation of several specialists they may not agree with 100% of what is listed in the paper, but do agree with a portion. This same physician is very much against the spinal cord stimulator. It doesn't mean he/she is wrong, it simply means that is their opinion.

I agree that it would make sense the physician would feel the way the article or paper was published in its entirety, but they may still treat with a treatment modality mentioned in the paper as not being as effective as they'd hoped. This physician is a HUGE advocate for Ketamine treatments. He/She just does not approve of the combination of certain medications.

Ketamine treatment is so very new. I feel it is too new for any issue to be black and white. It is again what the physician feels is best for the patient. My pain physician uses Ketamine treatments, but opted for Prialt for me.

It has been determined that the induced coma in Germany is effective for now, but there are no long term results as far as I know. Being the USA does not allow induced comas for an extended period of time for this purpose, we may never know. I hope this changes, but they do move slowly.

Dr. Anne Oaklander of Harvard (I believe) has been able to create CRPS within rats. This is HUGE. There have been breakthroughs as to who may be more prone to CRPS; people under a great deal of stress at the time of the trauma, the typical type A personality, and/or the possiblilty of a genetic predisposition to this disease. We have one member with 5-6 other close family members that have RSD. That is the largest number I've seen thus far, but we are seeing more and more within the family units.

Dr. Oaklander has made great strides in her CRPS/RSD studies. In finding what may cause CRPS it means they are that much closer to finding a cure or a way of stopping it. Remission is not a cure, simply a lessoning of symptoms. I think we'd all be thrilled with the latter if that was all that was available???

I do believe it has their attention and many may now be on the fence, so to speak, about various treatments. Again, Ketimine is too new to have any long term results. This is where may of the physicians are careful. It may have been out for a while, but it also depends on the studies done, where they were preformed and how it was administered.

With Prialt being even newer, more and more physicians are leery of attempting the trial as mentioned previously, the FDA has not approved specifically administration via certain methods, but if Medicare pays for it there should be some approval at the government level. Again, this is simply speculation on my end. After talking with someone who checked with other professionals across the country, it was determined the spinal injection was not the proper way to administer a trial. The infusion would have been more effective and accurate. The injection was effective, but requires a lower dosage and titrating up to a therapeutic level prior to introducing additional medications into the pump.

I hope this makes sense...lol. If not, email me and we can talk further...

Bonnie

Thanks, Bonnie,

That was very interesting.

If you look back through the forum you'll see we've already had a *lot* of discussion about ketamine treatment; one of our Australian members went through the 7-day infusion in Melbourne a couple of years ago, successfully until the birth of her last child. Another member on the "old" forum did the German coma, not so successfully. We've also discussed the work and comments of Dr. Oaklander (mixed reactions) and many others.

I'm really hoping that prialt will work well; but I'm hoping even more that they will find a more user-friendly method of administration, like...tablets! There are really no medications for very severe pain outside of pumps and hospital care that work and still allow you a decent level of functionality.

So... I'm now assuming that guidelines are just that: guidelines, right?

And, the burning question - how did you come to be in the company of Doctors In The Know?
(just nosey )

all the best!

We've also discussed the work and comments of Dr. Oaklander (mixed reactions) and many others.

I completely understand...lol.

Yes, they are just guidelines. At times they are followed more closely than others, but overall they are simply suggestions and/or opinions.

I have been very fortunate to be able to attend conferences, educate on CRPS, and spoke at a pain conference. I am a patient advocate for people in pain and work closely with physicians and other medical personnel on pain issues and treatment modalities. I also teach the public in general on pain issues and attempt legistative changes for pain procedures.

Nothing impressive...lol.

Bonnie

Thanks again for sharing all of your knowledge...Do you know if there is much being done about stem cell research?

Debbie

wow I have just been diagnosed with RSD and seeing what you guys have gone through and are going thru.....god bless you all...meds seem to be helping but the pain specialist I just went to want to do 6 blocks in 3 weeks and I am scared to death I have movement just the pins and needles and a little stiffness....dont know what to do it does not seem like these blocks do much?????? but progress the stuff...I am really confused and the pain clinics are anestiologist not specialist in rsd??? any suggestions...Good luck and god bless you all
Tammy

The pump implant has been scheduled for this Monday!!!! Aargh...that was quick. They had a cancellation and got me in early. I will be in for a few days. I was naive enough to think it was similar to the stimulator surgery, but I guess it is a bit rougher than that. It will be worth it, right? The Prialt is an incredible medication for me anyway (the trial was). Let's hope this will work for everyone!!!

Take care,
Bonnie

I spoke to a Dr. a few months ago RE: zinconitide. He is was very much in favor of it. However, I am unable to have anything invasive ( such as the pump) as it triggers of RSD or Fibro - (I have both) and will actually cause me more pain in the area invaded.
This Dr. said the Elan Co. was working on a pill form of this drug. NOt sure if this is accurate info. but it sure would be a lot better than having to do the pump and the invasive procedure for many people.
Sydney