Results 1 to 6 of 6

Thread: Survey

  1. #1
    Junior Member
    Join Date
    Sep 2003
    Location
    WEst Chester, PA
    Posts
    6

    Survey

    Would everyone with Central Pain PLEASE take the time to fill out the survey at painonline.com We need your input badly. Thanks to all those who have already done this.

  2. #2
    In agony today. Went to painonline site-can't find survey. I can't even remember if I've already done the survey. would someone please send me direct link to survey? losing mental faculties fast........

  3. #3
    Dear Skye,

    Thank you so much for asking, and once again, your post was really something.

    There are TWO Painonline sites. One is for information, that is painonline.org. The second is painonline.com which is where a real programmer made us a mouse click survey, which is easy to use.

    So far the post stroke pain people have sent lots of useful information, but we are short SCI surveys, for some reason. We need about a hundred more. Please go to painonline.com and in the lower left, about halfway down, you will see the word "survey". Click on that and it will take you to the survey.

    There is some information also at that site, but it is just supplementary to what is at painonline.org, which is the best CP site for education, in my opinion. However, I feel like praising every one of them. They all have their place.

  4. #4
    Senior Member mike's Avatar
    Join Date
    Jul 2001
    Location
    Florence, Kentucky
    Posts
    885
    Dejerine, do you know what will be done with the survey results once they are summarized?

    mike

  5. #5
    Mike,

    Thank you for asking. I like the way you actually READ these posts, and reflect. The answer may be more than you are looking for.

    The surveys will be used to inform doctors what to expect, and how to identify CP when it comes into their office.

    This may surprise you, but the average patient in the first surveys took nearly one and a half years to be correctly diagnosed, and had seen TEN doctors. In the meantime, they nearly went insane from being called insane when they were suffering so badly.

    The first data went to NIH where we had an inside and NIH was VERY helpful, also NIDH and NIMH. They published a description which made knowledge about the reach of CP much wider and these sick people were finally afforded the dignity of being patients.

    If a person merely goes to a spine center, they now have a good chance they will be diagnosed correctly right off.

    The problem is that THERAPY is still one dimensional. Although the diagnosis is usually made correctly now, the treatment is NOT being correlated with the particular component which is experienced.

    The publication by IASP of the Wall/McHenry components has really helped, but there is still not good literature saying THIS surgery, or THIS drug does well for THIS symptom/component.

    For example, our early research indicates anticonvulsants do better for the shooting pains (which the British call lancinating pain) than say, tricyclics.

    The problem is that when an author publishes on CP, they do NOT distinguish WHICH component the patient had and WHICH were benefitted. The same is true for imaging scientists which report on CP, as if it were one thing. We would like to see PET scans and fMRI studies which say this patient had BURNING pain and Lancinating pain. When we excited burning pain by light touch, THIS finding came up on the functional MRI.

    Right now they are fumbling in the dark because they lump ALL CP into one basket. This has actually made some pretty good scientists skeptical about bona fide patients, because nothing specific came up, but they dont' understand they MUST elicit the pain, DURING the fMRI, or they won't be able to see anything. The Germans recognize this better than the Americans.

    We are trying to clarify and delineate the groups and patterns that exist within CP and then guide the investigators, including the ion channel researchers, to consider WHICH clinical symptoms are present before they feel their articles are ready for publication.

    We are trying to do this by a database suggested by Patrick Wall which gets more specific. We knew we needed this but lacked the funds to hire a programmer. We finally got one and now we have the survey in a mouse click type of format.

    The information will also be used to let NIH know about the specifics and hopefully Zerhouni will respond as graciously as did Harold Varmas, by issuing a new publication making docs aware to be more specific about reporting WHICH drugs benefit WHICH pain component.

    In other words, it is basic research. Please fill out the survey and encourage others to do so. We are trying to lay a background, so when people write to Zerhouni, he will recognize that more research needs to be done.

    Another problem is that abnormal pain handling is now being picked up unexpectedly in many diseases, where it is being traced to the Central Nervous System. It is recognized these diseases, like irritable bowel, (and believe it or not, hypertension), are NOT CP, so they have invented a new term, "Central Sensitization". We want to make CP very clear so the research funds for CP do not get drained off into Central Sensitization. This is especially important for PhD's who do not see patients and don't read the clinical literature much, and we need to help them identify true CP, in its varied forms, so they can tell us which biochemical pathways are responsible (and hopefully which therapy is best).

    When we have gathered data, we hope to have results analyzed and sent back to every contributor so that they will have a reward for helping. However, anonymous completion of the survey is just as valuable for us if you do not wish a response later down the road.

    The database was initiated by Patrick Wall. He died not long ago from cancer. He asked us to get a user friendly survey and put the database in a form which would alert clinicians to symptoms which are in the array of central pain. The information will be given to a statistician, who will make frequency graphs. Then, we hope to get this to as many pain doctors as possible.

    The very most heartbreaking letters we get, and ones where we fear for people's lives is when their doctors fail to recognize the patient is being completely truthful, and also are within the range of what happens with CP. You would be shocked to read some of the stories of docs who lecture patients or give them the business for being "weak" or whatever, simply because the patient has said something that is not yet in the literature. A good example of this is "atopoesthesia" which nearly everyone so far completing the survey has, but which has not appeared in the literature since Gustave Roussy first named it in 1906. The IASP recognized the symptom again in the Wall/McHenry article, after 98 years!!

    Ron Tasker, a wonderful neurosurgeon in Toronto, who discovered pain travels in the Spinothalamic tracts published some famous articles on the remarkable fact that similar symptoms of burning pain can occur in CP, and similar CP can occur, no matter where in the Central Nervous system the injury occurs.

    Since the Tasker principle became known, doctors kind of made CP into ONE thing. Dr. Tasker is very brilliant. He has helped repeatedly with expanding the number of components and never intended for docs to treat all CP the same. He is semi-retired, so younger people carry on the fight against CP.

    Please help us. Almost all who volunteer to help at the painonline sites, including docs, researchers, medical students, technical writers, etc. either have CP or have loved ones who do. This is a grass roots effort, but since Bonica and Wall died, we are having to interest new people at the top to make sure we have full legitimacy. Good statistical data makes them more comfortable with helping.

    By the way, Mike, you are are hanging tough,and I want to encourage you. Painonline is for YOU, and ME, and is one of your best hopes toward getting funding for what afflicts you and what afflicts me.

    David deserves so much praise for the countless volunteer hours he has contributed with NO compensation. We are driven by the suffering we see. It is like we are trying to help the third world, but that third world is right here in the US and in Canada, and the UK, Germany, France, etc. All these places are reading painonline.org and hopefully will send patients to painonline.com, as well.

    Jorgen Boivie at Karolinska in Sweden is hoping we can get data. He will undoubtedly be able to give a little bigger punch there for our efforts. We have just never had the money to hire a programmer who could write surveys, until we found one who did it for free.

  6. #6
    Oh, dejerine, I didn't even know of painonline.com existence! When I read the original plea to go to the site's survey, I automatically went to David Berg's site, (.org) which I have bookmarked. .com... Oh, duh!! (This is what I mean by my loss of mental faculties.) Anyway, I did complete the survey-it wasn't easy-I had to concentrate VERY hard. But I'm delighted to help. I have read everything you've had to say here at carecure and my hat's off to you for your bringing so much to light I wasn't aware of. I'm in too much pain to be more specific, but no matter-I feel more empowered and less alone, tho physically worse by the day. I have seen much intelligent dialogue and interesting posts these past few weeks, just can't respond much anymore. I'll keep trying to hang in there, even tho I won't be showing up much on the site. You are all in my thoughts, even tho I've never actually met you. You are my connection to sanity in many ways, by your sharing information, validation and compassion. Godspeed.

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •