Re: Continuation of Adhesional Lysis New York

From: Christine M. Smith (smithy@maine.rr.com)
Thu Oct 28 08:05:28 1999


At Wed, 27 Oct 1999, Merri Ellen wrote: >
>Boy...did this post speak volumes to me personally!!!! I have been
>behaving extremely impatient and frustrated with my GP because they do
>not seem to be responding the way I want them to. NOT that I WANT more
>surgery. I just want somebody to do something. Does that make sense? I
>am an action taker. I examine problems...establish what the options
>are...pray and then MOVE! Unfortunately for me this doctor's office
>seems like they are six pages behind me in the book. (grrrrrr!) I have
>been responding with a strong level of uncooperativness with all of
>their plans for test after test. (painful...expensive...and
>ridiculously repetitive in my opinion) BUT...this post has given me food
>for thought. What if there is another reason for this increase in pain?
>What if there is another reason for all the other symptoms? What if I am
>WRONG and it is not the adhesions this time? I had already agreed to the
>further testing...just to shut them up basically...but now I think I
>will endure what lies ahead with a different attitude! Thank you for
>sharing your experience!
>
>At Sat, 5 Jun 1999, Beverly J. Doucette wrote:
>>
>>OOPs...hit the wrong button!!!
>>If a medical facility DID NOT perform medical tests on a patient
>>presenting with complaints of pain and assumed that thier symptoms of
>>pain WERE due to adhesions because they have a history of them, what
>>would you do if you DID have a tumor or cancer, and it went undetected
>>because of a DR. writing your pain off as due to adhesions without
>>checking into it? I'd be pretty miffed!
>>My recent contacts with Mayo Clinic indicated to me that a number of the
>>DR.s DID in fact feel that adhesions in and of themselves caused pain.
>>Like almost every where else though, they have not come up with a
>>practical treatment or surgical procedure that would benefit an adhesion
>>former. Mayo will work with an adhesion patient through pain
>>management. I did start my pain management through them. I cannot see
>>a basis for an " investigation" into Mayo or any other medical facility
>>because they perform medical tests on those of us who have a history of
>>adhesions. I was found to have TWO tumors....and that was only through
>>an adhesional lysis that I elected to have done in New York under DR.
>>Reich! If he had not found them, who knows what might have happenend to
>>me. I would not allow any local DR's to perform anymore tests on me as
>>I was convinced that ALL MY pain was from adhesions and that there was
>>no valid reason to put myself through testing that would have negative
>>results for abnormal pathology let alone pay for tests over and over
>>again...boy was I wrong!!! So, I have to advise all, for what it's
>>worth, the testing is necessary and could save yoour life! If all tests
>>have negative results for abnormal pathology, then it is probably your
>>adhesions. It is then up to you to determine the next step....surgery
>>for them or live with them and try pain management. I do believe that
>>the more educated one becomes to thier own disorder, the better equiped
>>they are to discuss treatment with a DR...even down to what needs to be
>>done in a surgery if you elect that route! I also feel that adhesional
>>lysis performed in a certain way, CAN reduce the amount of reformed
>>adhesions and in all probability, decrease the formation of DeNovo
>>adhesions...I firmly believe that there are no barrier's created today
>>that will be effective in dealing with adhesions..and I mean NONE! Once
>>you learn what type of procedure is best for adhesional lysis, you can
>>discuss it with your surgeon..even dictate how and what you wish to have
>>done for you and this disorder! Helen, give me a back atcha if you wilL!
>>Thanks Beverly
>
>--
>Merri Ellen

Hi Merri Ellen: I have said this several times and I do not feel my suggestion that a person's pain could be caused by other things besides their adhesions was well received. I don't mean this as criticism of anyone, just an observation I have made. The only explanation that I can think of is that it confuses the issue too much. Everyone, including myself, wants to know what is causing their pain and then, what to do about it. So until you get that diagnosis sometimes it feels like you are going round in circles. But once you get that diagnosis, then you know what you are fighting. But what if it is wrong? Since treatment and tests for adhesions often results in no answers or improvement, doesn't it seem possible that it may be that they are not causing the problem? Even when you think they should be! Or, they might have been your initial problem, and now you have a new one. In my situation it certainly looks like adhesions are my problem- pain, extensive pelvic adhesions lysed during two laparoscopies. Up until I saw the colo-rectal surgeon I believed my laps did not help and that I was an adhesion sufferer. However, by the time I saw the colo-rectal doctor I began to have nagging little doubts in the back of my mind (reasons for these doubts but too long to go into here) It just so happened that the colo-rectal doctor knew of a situation in which the patient complained of pelvic pain for which she had previously had surgery. Further investigation (the medical merry- go- round) resulted in the diagnosis of sacroiliac inflammation, apparently a very common source of pelvic pain. It seems that many have various GI tests, but I wonder how many consider other sources, such as spine. It was the last thing I would have thought of, but not my gyn who suggested the possibility at my first visit. I laughed and said no way, I have a great back. And besides, I have no back pain! Well, my MRI (two years later) showed I did not have a great back and now I do have back pain. Apparently sometimes back problems only cause abdominal or pelvic pain. Merri Ellen, worse than a doctor wanting to do all kinds of tests you think is unnecessary, is a doctor who does some investigation but then concludes (prematurely in my opinin) that this is just a common nuisance that many people have. (or worse, that almost everyone has something they don't know the cause of) So I am continuing the investigation on my own. I have self-referred to an orthopedic doctor and have an appointment Tuesday. The colo-rectal doctor's patient went from the ortho doc to a rheumatologist where she was finally treated so I may still have a way to go as I believe there is an underlying reason why I have this sacroiliac inflammtion (if I do have SI inflammation, still undocumented) In the end, it may turn out that my problem *is* my adhesions (which at this point I have no way of knowing are there again or not) but at least I will know that other sources have been considered, not just the sources that seem most likely. I agree that there are many who post on this forum where it seems that adhesions are their main problem, and suffering terribly from them, but I wonder how many are barking up the wrong tree? This is so frustrating, why would anyone even want to be a doctor. :<(

Chris S.


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