Re: CAT Scans - Millie-To Ginny

From: Ginny Halpern (gingin99@home.com)
Mon Jun 11 19:22:15 2001


Colette:

Bless your heart, I wish I could tell you how many people I have come across who were told the same thing, time after time, made to feel like schlepps and even like pariahs until some really bright, intuitive doctor got his hands on them and found the problem by opening and looking.

I am pretty comfortable saying that after 16+ operations and a total of 16.9 months in hospitals, ICU and various step down units for adhesion related diseases and disorders that 99.9% of the medical profession regards "us" as loonie toones, "bored housewives" and drug seeking junkies. If I can use this nightmare of a life of mine to do some good for anyone it is to say that this specific disease is NO LESS DANGEROUS OR TRAGIC than many forms of terminal illnesses and diseases like diabetes. (Unfortunately, diabetics can be comfortable knowing that they will always receive adequate insulin and monitoring for their sugar levels whereas ARD patients with unrelenting pain will suffer embarassing, degrading and even dangerously casual medical treatment simply because WE have a disease that is undetectible unless we are sliced and diced and take up valuable hospital bed space for weeks on end.)

Bless us all, everyone.

Ginny

At Mon, 11 Jun 2001, Colette wrote: >
>Dear Ginny
>Wow i'v been to the ER several times had x-rays catscans ectra.. they
>found nothing basicly told me i needed more healing time from my surgery
>in dec.2000 I had a TAH now i'm going onto 6mos how much more healing
>time do i need? And why don't these dr's just listen to us instead of
>thinking were crazy? God bless ginny and thank you for the info at least
>i know now that i'm not crazy!
> Big hugs to you!!!
> Love colette
>>
>>Dear Millie;
>>
>>Just want to tell you this on the board as well as via personal e-mail,
>>in case anyone else has the same concerns:
>>
>>I had 4 solid days of in patient CT scans, X-rays, Barium studies,
>>contrast studies and more poking and prodding, ultra sounds and even a
>>psych. evaluation than you can shake a stick at. ALL WERE NORMAL.
>>(including the Psych. consult!)
>>As you know, my daughter is an OB/GYN surgeon and she scrubbed in on the
>>laparotomy that was finally done, after all tests were negative and I
>>was writhing in pain.
>>Even the surgeon who agreed to "have a look" believed he would find
>>minimal adhesions and nothing else.
>>
>>I had 8 hrs of intense surgery. The comment made by all 3 attending
>>surgeons was :My God, this is the most horrific bellyful of adhesions I
>>have seen in all my years. Every organ is displaced by several
>>milimeters. Her bladder is embedded in the transcending colon.
>>blahblahblah. NO WONDER SHE HURTS!"
>>
>>There isn't a non invasive study in the world that will show adhesions
>>and the havoc they create inside us. Your colonoscopies and scans are
>>normal for cancerous lesions and tumors, but that doesn't negate the
>>fact that you have pain and that you have adhesions causing that pain.
>>
>>As I said to you before, it's a tough and tricky descision to have to
>>make regarding more surgery, and weighing your pain versus the chances
>>of developing more adhesions is something only you can do.
>>That surgery was 6 yrs ago. Today I have more pain than I did back
>>then, but I am glad I had the operation. At least it made me feel like
>>I was NOT CRAZY!
>>
>>Please don't think that clean scans and x-rays mean that you don't have
>>real pain. It simply means you don't have anything that can be
>>visualized on a screen.
>>
>>Love to you
>>
>>ginny
>>
>>At Mon, 11 Jun 2001, Millie wrote:
>>>
>>>Dear Rose,
>>>The report said something like... "scope to cecum.. poor prep esp. of cecum
>>>& rt. colon. Rest of prep fairly good. no lesions visualized. Small
>>>internal hemorrhoid."
>>>Under discharge plans, "Bowel regimen. Repeat test 5 years.
>>>I don't know what to do.
>>>M.
>>>

>>>>>>>----- Original Message -----
>>>From: "Rose Lunn" <rose.lunn@eds.com>
>>>To: "Multiple recipients of list ADHESIONS"
>>><adhesions@mail.medispecialty.com>
>>>Sent: Monday, June 11, 2001 3:32 PM
>>>Subject: Re: CAT Scans - Millie
>>>
>>>> Millie,
>>>>
>>>> Is that all she said about your colonoscopy? (She said she had no
>>>> trouble getting scope all the way through.) No mention of what she
>>>> found? Can you request a copy of her report? The doctor that did mine
>>>> wasn't the world's best communicator, but he did send me a copy of his
>>>> report when I asked for it.
>>>>
>>>> I know it is hard to be proactive when you hurt and are soooo tired. Is
>>>> there someone who can intervene for you?
>>>>
>>>> Love, hugs and strength to you,
>>>>
>>>> kcmo rose
>>>>


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