Re: compalation of conversations with Alexandra Alger

From: LNewman@milbank.com
Tue Dec 14 13:42:28 1999


you can send to "aalger@forbes.com" anything you can think of to continue to help or plight. I am just clearing through my emails as I was so sick this weekend, I didn't come in yesterday and this morning I had 70 emails to wade through. Needless to say, I haven't accomplished much. I tell you, if I could, today would be my last day at work. It is such a struggle to continue but I know I have to. Don't forget to send me those addresses for Hillary and Tipper if you know of one that will bypass the White House pit bulls! I can get someone's directory here to get the rest.

> -----Original Message-----
> From: Bernie and Beverly Doucette [SMTP:bnb@cybrzn.com]
> Sent: Friday, December 10, 1999 2:16 PM
> To: Multiple recipients of list ADHESIONS
> Subject: Re: compalation of conversations with Alexandra Alger
>
> WOW...you made progress Laura!! Great start! What address did
> you contact him at?
>
> Keep up the good work and copy that letter and send it to Hillary,
> Tipper , the Mational Institute for health...and your congressmen and
> Senators!! Demand money be allocated for reasearch on ARD!! Here is the
> web sight for those address's..http://e-mailunclesam.com
> you can e-mail Hillary & Tipper, but they will not see your
> e-mail...BUT,,there will be an address where you CAN send your letters to
> them and they WILL see them personaly. First you must submit your letter
> through e-mail, then you'll receive clearance and you will be sent the
> addrss for each one!! Please send your letter NOW!!! This is an
> election year coming up and we the voters will be listened to if there is
> enough of us to be heard....we may at least be able to bring ARD to the
> attention of these people and demand moneys for research for ARD!!!
>

>> ----- Original Message -----
> From: LNewman@milbank.com <mailto:LNewman@milbank.com>
> To: Multiple recipients of list ADHESIONS
> <mailto:adhesions@talk.obgyn.net>
> Sent: Friday, December 10, 1999 12:35 PM
> Subject: compalation of conversations with Alexandra Alger
>
> (My first contact with Alex)
>
> Dear Ms. Alger:
>
> I read with great enthusiasm, your article mentioned above.
> I was diagnosed with the disease when I was 17 years old. I started have
> the problems when I was 13. I missed one to two days a month curled up
> on the sofa with a heating pad or hot water bottle across my abdomen,
> sobbing for relief of any kind and yet, there was not solace for me. I
> was lucky though (according to some people) because at the age of 17, I
> married my boyfriend and gave birth to our little girl during the last
> stages of my senior year in high school. During the year following her
> birth, they finally put a name to the face that haunted me for years:
> "ENDOMETRIOSIS". My monster. But who really was the biggest monster --
> the surgeon at the hospital or the disease? During the course of
> treatment (at that time, the doctors at Bethesda Naval Hospital), I was
> given large doses of birth control pills to trick my body into believing I
> was pregnant so as to kill off the disease. Did not work. Rushed to
> the hospital for emergency surgery, I had two extremely large cysts and in
> the process, I lost one ovary and uterus. Over time, I continued to be
> cystic causing more surgeries. Bowel obstructions jumped on the
> bandwagon and before you know it, I have had 13 surgeries.
>
> The final outcome: SEVERE ADHESIONS. I have been a
> sufferer since 1977 (confirmed but I believe it started after the
> hysterectomy). I have pain so intense, I feel as though I will black
> out. I tried to commit suicide because of the pain due to the fact that
> I had numerous doctors that told me my pain was "all in my head". It
> seemed as though no doctor knew anything about Adhesions until my last
> attempt at suicide. They sent a doctor to my room that gave me an
> examination and discovered my problem. When they started treatments
> (trigger-point injections directly into the abdomen and pelvic areas), the
> first time they tried to insert the needle into my abdomen, it bent the
> needle! They had NEVER seen that before! They could not believe how
> bad my adhesions were! They tried to give me treatments twice a day and
> even though they were successful in getting the needle in, pushing the
> plunger down to administer the medicine was all but impossible. After
> months of this without long-lasting success, we moved on to cryo (freezing
> the nerve) which after one procedure, not successful. We then tried a
> drug study program and that, too, was a failure. Now, I have a morphine
> pump attached to my spine and a pocket on the left side of my abdomen
> (embedded under my skin) releases a very small amount of morphine on a
> 24-hour cycle AND I take two oral medications to help with sleep and pain;
> however, I am in excruciating pain every day, all day, day and night.
>
> YOU MUST MAKE THE DIFFERENCE NOW -- WHETHER TO TAKE THIS
> INFORMATION TO THE PEOPLE AND SAVE SOME LIFE OF AN ADHESION SUFFERER THAT
> DOES NOT KNOW THERE ARE OTHERS LIKE HER/HIM, AND THAT THEY ARE NOT
> ALONE!!!
>
> We need people like you who will run this story, get the
> information out there and hopefully, get the government to listen to us
> and get us the help we so desperately need. A lot of lives have been
> lost due to this mental killer. Families have been ripped apart by it.
> Husbands that have had to become the "mommy" figure because the wife
> cannot even get out of bed because of the pain. I know from experience
> about this. It is all that I can do to drag myself out to work. By the
> time I get home, I am in so much pain I can barely stand. If it is not
> important, the weekends are spent entirely in the bed to get prepared to
> do it all again (go to work). I am blessed beyond words because my
> husband does the "mommy" thing excellently -- and, STILL loves and
> respects me because I DO help him; by working!!! He is the reason I
> drive myself because I do not want him to have to take on another job to
> make ends meet, so, as God gives me the strength, I continue to go to
> work.
>
> I pray that you will do a follow-up story using parts of
> this letter. People need to hear about Adhesions and I believe you can
> tell it.
>
> Sincerely,
> Laura H. Newman
> An Adhesion Sufferer
>
> -----Original Message-----
> From: Alexandra Alger [SMTP:aalger@forbes.com]
> Sent: Thursday, December 09, 1999 3:01 PM
>
> Dear Laura,
> Thank you for writing. Yours is the first letter I've gotten,
> believe it or not. I'm overcome by the horror that you've lived with and
> continue to live with. I hope you won't think I'm being presumptuous, but
> I wonder if surgery at the hands of a really fine doctor might not help
> immeasurably. Problem is, you could count on one hand the number of
> surgeons who are skilled enough to take out adhesions and endo wherever
> they are in the body. I have some names, if you are even the least bit
> interested. One of them is Dr. Redwine--too bad he's in Bend, Oregon. (Do
> you by any chance live in Oregon?)
>
> I won't be able to do a followup article anytime soon. Your
> letter is so powerful. What would you think of our excerpting it in a
> letter to the editor? If you agree, I could talk to the letters editor
> about it. Write me back. Best, Alex Alger
>
> Dear Alexandra,
> Thank you ever so much for responding so quickly! I must say, I
> was taken aback when I saw your notice and am happy to say that I would
> love to have you present my letter. As a matter of fact, I am most
> grateful that you will be the one to tell my story; I wouldn't have it any
> other way! Now, to answer your question regarding visiting with another
> surgeon -- Dr. Harry Reich is supposed to be the best in the business and
> I went to New York to see his partner, Dr. Vidali, with whom he is very
> close with; therefore, I thought it would be just as good. I couldn't
> have been more wrong. The only thing they have in common is a high
> price: $350.00 for a consultation with Dr. Vidali, only for him to say I
> am not a candidate for surgery and if someone were to mention it, I should
> run in the other direction. I was reduced to tears and sobbed
> uncontrollably even as I left his office and took the cab to the train
> station where, upon taking my seat, I proceeded to imbibe. As a matter
> of fact, since I have a limp, the barkeep walked me back to an empty seat
> with my stuff (because I could not remember WHERE I was sitting) but after
> a brief synopsis, understood completely. Oh, I forgot to mention why I
> have the limp -- I was told that if I had the nerves severed in my spine,
> there was a strong possibility that I would be if not pain-free, almost
> so. The surgery was supposed to numb me from just below the breast-bone
> to the middle of my thigh, therefore, I was to be careful around hot
> things and the like because I may not feel them. Well, I had the spinal
> surgery, learned to walk all over again and STILL HAVE THE PAIN! The
> surgery was a total failure and the only thing I have to show for it is a
> nasty scar and a limp (cannot run or speedwalk because I cannot maintain
> my balance). My friends (few they are) call me "mugbait" and "weeble"
> (remember: weebles wabble but they don't fall down), terms of
> endearment.
>
> Sorry I got side-tracked there. Anyway, before I left his
> office, he said he wanted to contact my surgeon (my surgeon that has done
> most of my surgeries for bowel obstructions because the adhesions wrapped
> around them and he had to do a lot of resection), but he has never been
> able to reach him. I don't hold to the fact that he has tried often
> because I called him back and he said that he tried and couldn't reach
> him, then asked for the number again to call. I haven't heard back so I
> just wrote him off. Based on his handling of my case, I am not sure if I
> can have surgery (remember, the more surgery, the greater the chance more
> adhesions form). There is a procedure that can be done whereby the
> doctor must comb through meticulous over each place and where the adhesion
> appears, he must lysis and cauterize at the same time to avoid bleeding
> out (it is the properties in the blood which produce the "stickiness" that
> adheres to whatever it comes in contact with and then starts to form a
> bond). After the surgery is over, he then would fill the abdomen with
> ringers lactate to make the organs free-float and let the liquid leave the
> body on its own. I know a woman who went to Dr. Reich (Beverly
> Doucette), and she is doing very well. HOWEVER, that is not to say that
> that would be the story for everyone. I live in Clinton, Maryland so you
> would think that I would have a finger on the pulse of every good surgeon
> in the Washington, D.C./Metropolitan area but that is very misleading.
> Especially when it took a trip to New York, New York (Park Avenue no less)
> only to come home empty-handed and brokenhearted.
>
> That is why it is so important to get my story out there so
> others can see that they are NOT alone!!! I belong to a group called IAS
> (International Adhesion Society) run by Dr. Wiseman, and he is trying his
> heart out to get us exposure so more people (especially those who would
> fund this type of desperately needed research) and free up the doctors to
> proscribe the narcotics in large amounts that are needed to ebb the pain.
>
> Thank you Alexandra, for taking on this huge project of getting
> the word out -- even if you have to make copies of my story and hand them
> to every journalist you know. Please feel free to write me anytime you
> want and if you need to speak to me, 9:30-5:30: 202/728-1251 and home:
> 301/868-2125 after 7:30. Take care and I look forward to hearing from
> you.
>
> Alexandra's reply (same day):
>
> Oh my Lord!!!! I know Dr. Reich is supposed to be good--he's one of the
> few. Have never heard of this colleague in NY. What hell!!! This Dr.
> Redwine says nothing's too hard for him--but i wonder if that's really
> true.....these doctors aren't gods, that's for sure. I'm goig to talk to
> the letters editor, and I'll be in touch. Thanks so much again. Alex
>
> These docs ARE expensive--unbelievable. I think redwine is cheaper, given
> where he's located. his number: 541 382 8622. Let me know what he says!
>
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