Wow! I feel truly blessed to have someone like you and this forum in my
corner with youre knowledge. Thaks vicki
At Mon, 9 Mar 2009, jetstamp wrote:
> >I wrote a couple more letters today, one to CNN and one to the local >health reporter at a local TV station. Here is what I'm trying to fit >into these letters: > >1. Brief as possible description of what adhesions are, some of the >things that may cause them (injury, surgery, endo-which is often >undiagnosed, anything that causes inflammation.) > >2. Attitudes encountered from the medical community when attempting to >seek help- their refusal to acknowledge adhesions or the problems they >can cause, subsequently denying the patient appropriate diagnostic and >treatment measures. Also, some of the lame, vague unhelpful catch-all >terms used to explain/dismiss the multitude of symptoms and pain, such >as IBS, Pelvic Floor Dysfunction, Depression, uterine fibroids. > >3. Explain that diagnostic measures are not offered because currently >in the U.S. the only means to do this seems to be laparoscopically- >even though in 'some' cases a simple abdominal exam should be sufficient >but apparently it isn't. >Also, explain the fMRI that has been available in Europe but apparently >not in the U.S. > >3. Explain how adhesiology is not offered (that is of course IF you're >lucky enough to find a physician who is even willing to admit adhesions >exist in you or can cause the problems you have). Explain why it is not >offered- which is because adhesions may reform. > >4. Explain the 'Second-Look Laparoscopy' procedure being used by a >'few' innovative physicians. This is where, after adhesiology, they go >back in in a week or so to check for new adhesions. If there are any, >they are softer and easier to remove than the original ones, therefore >removing them causes less damage and sometimes this is sufficient to >prevent any additional adhesions. Suggest that this be standard >operating procedure when adhesiolysis is performed. > >5. Give as brief as possible a description as to how adhesions relate >to you, and the overall, general experience you have had with the >medical community. Mention anything major this has caused in your life- >like if you have lost a job or a relationship due to this. > >6. Mention this site- IAS (International Adhesion Society- spelled out >as well) and mention that you have a lot of company! > >7. Mention Karen Steward's 2007 book- 'Doctors: Bound by Secrecy, >Victims: Bound by Pain'. If you have read it, give a brief description >of the book and state how well you could relate to the hostile, >indifferent attitude of the medical community. I always end my letter >stating that the story has a happy ending- but it required going to a >doctor in Germany! > >Also, if you refer to Adhesion Related Disorders, be sure to spell it >out. As I mentioned in a previous post, if you google ARDS, a condition >called 'Acute Respiratory Disease Syndrome' shows up. > >I am constantly trying to think of magazines, TV stations, and TV shows >to write to. Sometimes they limit the number of characters in the >letter so you can't get everything in, but I was not limited on the CNN >site or my local TV station's. > >If anybody has any suggestions as to whether anything I've not covered >should be included, please post a reply. I did read that link that was >posted today about the deaths related to adhesions so we'll have to >consider adding that when possible/practical. > >Joan