With regard to the procedure my PMdr wants me to do, I am striking out on the net for an actual article about "hypogastric plexus block". They talk about everything BUT that. All I have to go by is what the dr gave me to read -- a mere 3/4s of a page. Also, I received my pump when I participated in a drug study program called SNX-111 by the company Nurex (sp?). When I failed the study, they drew out the study drug and replaced it with morphine. No, I am not even close to help from the drug. Even they are reluctent to prescribe enough to really help. The part I don't understand is, morphine and the like were specifically designed for acute, intractable pain; therefore, why aren't they using it on us? They prolong our agony, listen to our crys, prescribe all types of drugs for sleeping and depression, yet, the one drug we need above all these is morphine!!! We are so tired of waiting for help. I believe we need to stand up right now and demand to be heard and treated. We have got to do it soon!!!! I am putting together right now, an entire discussion I had with Alexandra Alger, the writer of the Forbes article. I just had to stop and write to Karen. Karen, no that anytime you need to vent, I will be here and so will the rest of the IAS team!!!! Bless You!
> -----Original Message-----
> From: Karen O'Keefe [SMTP:kareno@azlink.com]
> Sent: Friday, December 10, 1999 2:01 AM
> To: Multiple recipients of list ADHESIONS
> Subject: RE: please help, I am so scared
>
> At least your doctors seem to care - how did you manage to get them to
> give you a morphine pump? I'm in severe pain, have tried everything and
> have been declared "inoperable" yet I have yet to find a doctor who will
> prescribe anything for me (oh, except for maybe aspirin - surrrrre). Today
> my gynecologist told me I should see a psychiatrist when I complained
> about the incessant pain. But it's not the first time I've been told this.
> I've made the round of doctors here in the valley and am coming up
> empty-handed. Has the pump worked for you? What did you have to go through
> to even get one? I'm sorry to hear that you're still having so many
> problems - hope this new procedure works for you. If I find any info on
> it, I'll send it.
>
> Thanks...Karen
>
> -----Original Message-----
> From: adhesions@obgyn.net [mailto:adhesions@obgyn.net]On Behalf Of
> LNewman@milbank.com
> Sent: Thursday, December 09, 1999 10:15 AM
> To: Multiple recipients of list ADHESIONS
> Subject: RE: please help, I am so scared
>
> Sue Ann, no, Dr. R's office did not recommend anyone to me;
> actually, I saw his partner, Dr. Vidali (I took the train to NY) and he is
> of the impression that surgery may not be an option for me. It cost me
> $350 for that opinion (see what I mean about the cost?). Since you will
> need to contact the clinical trials nurse, can you ask her if they still
> need volunteers for any new pain management studies? You may give her my
> e-mail address. At this point, I am at a crossroad with my pain and I
> have to decide what I am going to do with the rest of my life. I am with
> a wonderful group of drs. but they seem as though they have no clue as to
> what more they can do for me and watching their faces just makes me more
> depressed than I already am, then, they want to know what is wrong. One
> of my drs., as tender as he is, said to me when I started crying in his
> office on my last visit, "It is the holiday season that is making you more
> depressed than I am used to seeing in you." As much as I like him, I
> wanted to punch him in the mouth for saying such a patronizing thing!!!
> I am crying because I'M IN PAIN, and I cannot take it anymore!!! The
> holidays had absolutely nothing to do with it; he just needed someplace to
> throw my feelings in because he can't handle the truth. Now he wants to
> try a procedure called "hypogastric block" (sp?) that is supposed to
> (hopefully) ease the pain at least in the pelvic area. I went on the Net
> to find info on it and couldn't scare up a thing. He gave me a sheet of
> paper (about 3/4 of the way down) on it but it was just not enough info
> for me to be sure I am doing the right thing. I am so tired of having to
> endure great pain for a few hours (if lucky) of relief. I am going
> through with it though, because I have no other options left. I am
> already on Morphine (an implanted pump) and I take Neurotin and Elavil but
> they are like taking aspririn for a migrane. Sorry to ramble on like
> that; it just helped to vent and I am so glad to have you to talk to.
>
> By the way, I just wrote to Alexandra Alger and I will let you know
> what her response will be. I will also attach the letter I send to her.
>
> -----Original Message-----
> From: Sue Ann Murray [SMTP:murraysa@penn.com]
> Sent: Thursday, December 09, 1999 2:12 AM
> To: Multiple recipients of list ADHESIONS
> Subject: Re: please help, I am so scared
>
> >Sue Ann, did Intergel work for you? I had wanted to see
> Dr. Reich (I have
> >suffered since 1977) but he was too expensive for me. Do you
> think your
> >doctor could recommend someone in the Washington D.C./Metro area?
> >
>
> Well, the doctor who did the surgery is convinced it worked
> very well. But
> the follow-up surgery was only two months after the first one, so
> while
> little had reformed then, who's to say what it's like now? I can
> say that I
> haven't had the same problems that I guessed were adhesion/endo
> related
> since then. I do still have some pain, but it is mangeable and I
> have too
> many other health problems to always know what's causing what pain
> in any
> case.
>
> I'm guessing Dr. Reich's office didn't have anyone to
> recommend? I can ask.
> I need to e-mail the clinical trials nurse about something anyway,
> so I'll
> try to remember to ask her since she sees the doctor all the time.
>
> Sue Ann
>
> <http://www.adhesions.org/forums/listcmds.htm>
>
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