Re: ADHESIONS digest 793

From: d_fincher@sbcglobal.net
Fri Sep 12 23:39:26 2008


>--- Original Message ---
From:"Adhesions Society" <adhesions@adhesions.org> Sent:Fri 9/12/08 7:02 pm To:"Multiple recipients of list ADHESIONS" <adhesions@mail.obgyn.net> Subj:ADHESIONS digest 793

ADHESIONS Digest 793

Topics covered in this issue include:

1) Adhesion Hell by "IAS Admin \(Tracy\)" <tracy.joslin@adhesions.org> 2) FROM MASSACHUSETTS & LOOKING FOR HELP by "IAS Admin \(Tracy\)" <tracy.joslin@adhesions.org> 3) Congenital Adhesions by "IAS Admin \(Tracy\)" <tracy.joslin@adhesions.org> 4) I really need help new in here............ by "IAS Admin \(Tracy\)" <tracy.joslin@adhesions.org>

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Date: Fri, 12 Sep 2008 20:56:37 -0500 ---------------------------------------------------------------------- From: "IAS Admin \(Tracy\)" <tracy.joslin@adhesions.org> ---------------------------------------------------------------------- To: "IAS Message Board" <adhesions@adhesions.org> Subject: Adhesion Hell Message-ID: <000001c91543$f5eef480$6401a8c0@Tracy> MIME-Version: 1.0 Content-Type: text/plain; charset="us-ascii" Content-Transfer-Encoding: 7bit From: "Donna Johansen" <donnajohansen@telus.net> Subject: Re: Adhesion Hell

Hi, I paid for everything and it wasn't cheap. I have, however, been given the green light to "submit" my receipts to our medical in BC. I understand from others that you can claim these expenses on your income taxes as a medical expense. Good luck! Donna

-----Original Message----- From: adhesions@adhesions.org [mailto:adhesions@adhesions.org] On Behalf Of IAS Admin (Tracy) Sent: Monday, September 01, 2008 4:57 PM To: Multiple recipients of list ADHESIONS Subject: Adhesion Hell From: cbauerle@sympatico.ca (Christine) Subject: Re: Adhesion Hell

Bonnie did you have to pay out of pocket for the surgery from Dr. K I live in Ontario please let me know. Christine

At Thu, 3 Jul 2008, Bonnie wrote: >
>I just want everyone to know I am now in my 6th week of recovery,
and >feeling great after 6 1/2 years of living with adhesions and
trying to >get help, or even a diagnosis from the medical doctors in the
province I >live.Alberta.I cannot even begin to describe the pain and the
life >change with me and my family that having this disorder caused,
and the >long long disappointing search of trying to find help until I
found >Dr.Krushinski in Germany.
>After years of tests and seeing a million doctors and specialists
where >I live I am now recovering, it is unbelievable to describe.I no
longer >have the severe pulling, the knife jabbing pain on my left side,
having >my abdomen distend so badly, looked like I was carrying triplets,
having >to wear maternity clothes, as that was all that felt comfortable,
and >having doctors appointments every week,and the pain meds this is
all >over for me!!! I still cannot believe it.
>After years of I'm sorry Bonnie, this is all in your head, or no
doctor >willing to see me, I finally decided to take my health into my
own >hands.
>I contacted Dr.Krushinkski in Germany, he was certain he could
help, I >did not feel aprehensive at all, after speaking with him.
>At this point I had no choice but to see him, I had no other
place to >turn.
>I was in Germany for 16 days, and loved it!! even thru my

operation of 3 >hours and the 2nd look to make sure all those nasty adhesions
were gone

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Date: Fri, 12 Sep 2008 20:56:59 -0500 ------------------------------ From: "IAS Admin \(Tracy\)" <tracy.joslin@adhesions.org>

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To: "IAS Message Board" <adhesions@adhesions.org>
Subject: FROM MASSACHUSETTS & LOOKING FOR HELP
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From: adhesions@adhesions.org [mailto:adhesions@adhesions.org] On Behalf Of cynthia meuse Sent: Wednesday, September 03, 2008 2:42 PM Subject: Re: FROM MASSACHUSETTS & LOOKING FOR HELP

try dr. arlen fuller- he was previously the head of the gillette cancer center for womenat mass general but is now at the winchester hospital- he does oncology surgery but he operate on me for a blockage and many many adhesions. he is world class. ________________________________________ Date: Wed, 3 Sep 2008 13:58:16 -0500 ________________________________________ From: krdfld@aol.com To: adhesions@mail.obgyn.net Subject: Re: FROM MASSACHUSETTS & LOOKING FOR HELP

Rachel, It's been many years but there was a great doctor in Foxboro, Ma. named Dr. Ralph Philiosophie he's a OB/GYN. I don't have he's recent phone number I hope this helps. Kathi from NH

-----Original Message----- From: IAS Admin (Tracy) <tracy.joslin@adhesions.org> To: Multiple recipients of list ADHESIONS <adhesions@mail.obgyn.net> Sent: Sat, 30 Aug 2008 11:23 pm Subject: FROM MASSACHUSETTS & LOOKING FOR HELP Sender: K9PAWS@AOL.COM (Rachel) Subject: FROM MASSACHUSETTS & LOOKING FOR HELP

Hello' My name is Rachel. I've been reading this message board for some time. I recently moved to Massachusetts from Florida. I'm now wondering if I made a mistake. My thought was that Mass. had some great hospitals and maybe I could get some help up here. The problem is (like everyone else) I can't find a Dr. who either knows what I'm talking about or believes that I have adhesions. The last Gastro. that I talked to told me that I IBS. The only thing that I have in common with IBS is pain. She also referred me to a Psychiatrist. I know that I'm not crazy and my problem is adhesions. When we lived in Fl. the last Gastro. surgeon that operated on me told me that he didn't want to see me again unless it was a life or death situation as my stomach was full of adhesions and another surgery would only make matters worse.

I won't go into all the details of my prior surgeries and stuff as I would just be parroting what everyone else has said before.

My guestion is, does anyone know of a Dr. in Mass. whom I could see that is versed in adhesions and it's related problems.

I'm on 80mg. of Oxycodone and my present family Dr. wants to wean me off of it. I can't do this without some other kind of help. Any suggestions would be greatly appreciated.

Hi Kristen,

I see that you are from Florida. I too have much the same problem as you have but am a lot older. When you say that you were referred to the Pain Management Clinic in your area may I ask which one that you are referring to? Would one of them be the Wellness Clinic? I was living in Florida for 18 years and just moved back to Massachusetts 3 months ago. We are originally from here. I know that they have great hospitals up this way but I'm not having much luck in finding a Dr. who knows much about our problem. In fact I was thinking about moving back down there as I keep hearing about 2 places in particular who claim to help people. Would you mind letting me know where it is that you went? We've just built a brand new house here and I don't relish the thought of moving again. I'm getting to old for that yet I can't put up with this pain much long. Thank you so much for your post,

Rach

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Date: Fri, 12 Sep 2008 20:57:18 -0500 ------------------------------ From: "IAS Admin \(Tracy\)" <tracy.joslin@adhesions.org> ------------------------------ To: "IAS Message Board" <adhesions@adhesions.org> Subject: Congenital Adhesions Message-ID: <000201c91544$0e046be0$6401a8c0@Tracy> MIME-Version: 1.0 Content-Type: text/plain; charset="iso-8859-1" Content-Transfer-Encoding: 8bit

From: adhesions@adhesions.org [mailto:adhesions@adhesions.org] On Behalf Of JMoore4877@aol.com Sent: Wednesday, September 03, 2008 3:04 PM To: Multiple recipients of list ADHESIONS Subject: Re: Congenital Adhesions

Amy,  I also had no trauma, previous pelvic surgeries, I had gallbladder surgery 10 years before this mess started.  When I was first opened up for a partial hysterectomy cause uterus was enlarged I had massive adhesions.  I have had one child normal deliver he is 16.  I have tried to figure out what caused this mess.  I cant and neither can any doctors.  I given up on the why and just deal with the day to day.  Good luck and god bless you. In a message dated 9/3/2008 11:55:28 A.M. Pacific Daylight Time, krdfld@aol.com writes: AMY, Where do you live? Kathi

-----Original Message----- From: IAS Admin (Tracy) <tracy.joslin@adhesions.org> To: Multiple recipients of list ADHESIONS <adhesions@mail.obgyn.net> Sent: Sat, 30 Aug 2008 10:53 pm Subject: FW: Congenital Adhesions Sender: ShakinThingzUp@aol.com (Amy) Subject: Re: Congenital Adhesions

Thanks for responding Kathi.

I've never suffered any trauma (like being punched or in a car accident). The only problem with PID is that when they discovered my adhesions in 2002, I did NOT have endemetriosis or adhesions in my pelvic region - only in my abdomen. So, I wouldn't think that was my cause either. I'm really at a loss...

My biggest problem though, is not being able to find a doctor who specializes in adhesions. I've been pouring over the internet in the last week trying to find one in my area, without any success. I just don't know where to look next.

God Bless! Amy

At Tue, 05 Aug 2008, krdfld@aol.com wrote: > >I have heard that pelvic inflammatory disease can cause adhesion, and trauma to the abdomen, like being punched or car accident any significant force to the abdomen. I hope this helps. >Kathi > >-----Original Message----- >From: IAS Admin (Tracy) <tracy.joslin@adhesions.org> >To: Multiple recipients of list ADHESIONS <adhesions@mail.obgyn.net> >Sent: Fri, 1 Aug 2008 10:33 pm >Subject: Congenital Adhesions >From: ShakinThingzUp@aol.com (Amy) >Subject: Congenital Adhesions > >In 2002 I had a lapriscopy to determine the source of my abdominal & >pelvic pain (and because I had ceased to have bowel movements and my >urine was quickly disappearing as well). I couldn't eat because it >literally felt like a chain was being pulled through my intestines. > >I had not had ANY abdominal surgeries prior to that date. They found >that my abdomen was covered with adhesions (Spider-web like) - adhered >to the abdominal wall, my kidney and my bowel. My bowels and kidney >were twisted (strangulated). The OB/GYN didn't even know what he was >looking at and had to call a Urologist in to tell him what it was and >what to do. They were cut. I was sent home after my day-surgery >procedure and told to come for a follow up 10 days later. They told me >nothing else except "The doctor believes he's fixed it."

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Date: Fri, 12 Sep 2008 20:57:38 -0500 ------------------------------ From: "IAS Admin \(Tracy\)" <tracy.joslin@adhesions.org>

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Subject: I really need help new in here............
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From: adhesions@adhesions.org [mailto:adhesions@adhesions.org] On Behalf Of JMoore4877@aol.com Sent: Tuesday, September 02, 2008 4:32 PM Subject: Re: I really need help new in here............

Yes welcome to the world of adhesions that dont exist or cause problems.  We all have been there.    In a message dated 9/1/2008 4:59:19 P.M. Pacific Daylight Time, tracy.joslin@adhesions.org writes: Sender: jetstamp@yahoo.com (AIRPLANE) Subject: Re: I really need help new in here............

Hi. I'm new here. Mostly I view and post on the IBS group website but thought I'd visit here as well. Seems like many people diagnosed with IBS actually have adhesion issues. I have good reason to suspect I am one of them but I can't even get a doctor to discuss this possibility nevermind attempt to treat it or even refer me to a pain clinic for it. There is a pain clinic not too far from where I live that deals with many issues- complex issues, pelvic pain but they require a referral from a primary physician.This pain clinic is SO CLOSE, yet SO FAR because I absolutely cannot get a physician to discuss adhesions as a possibility, PERIOD!

My issues began back in 1984 after an on-the-job incident. The job required heavy lifting, pushing and bending and at the end on one workday I bent over to pick something off of the floor I felt something in my lower right quadrant snap and then heard and felt a lot of fluid gushing around in the area. About two weeks later, it felt like my pelvic floor essentially collapsed and I developed severe, frequent diarrhea and pounding pelvic pain 24-7. I was passing huge amounts of foul gas almost constantly and my pelvic floor muscles were shot.

I finally went to a doctor c couple of weeks later. He didn't even come into the room! He just stood in the doorway with a grin on his face and chuckled 'You've got IBS. Eat lots of fruits and vegetables and a bland diet. I'll have the nurse give you a copy of a bland diet." And that was it! He was the chief-of-staff there too!

Anytime I'd describe the incident to doctors they'd act like they never heard of such a thing- like they've never watched football game and heard of a pulled this or a torn that- and say that if I had a hernia they would be able to stand in front of me and see it!

Anyway, my attempts to correct the prolapse were fruitless. Their advice was always 'Do Kegels' which I tried for years but they only made the pelvic pain worse because the injury area had tightened up so much (suspect adhesions) that nothing would move. And of course once you are labeled with IBS, doctors will not let go of that diagnosis and consider that something really is wrong! Interestingly, about 6 years later I was able to have an exploratory laparoscope. They said my uterus was enlarged and distorted (no surprise to me!) and said it should come out, and that my insides were a mess but they didn't know why. I was still hoping to get my life back, possibly have kids and knew in my heart that the unterus was NOT to blame even though I had a fibroid. But what did surprise me was that after the exploratory, my abdomen and pelvis was extremely sore for a few days. Then, I could feel everything loosen up and my body corrected itself. The 'hernia' feeling went away, the horrible pain went away, and my GI issues were gone. However, this lasted only a couple of weeks and then everything tightened up and all the horrors returned. When I told the doctors this, they said I was 'imagining' the temporary improvement and that the surgery had a placebo effect! DUH! How do you explain me going down 3 clothes sizes in less than 2 weeks due to shedding excess water?

Anyway, I did not learn about adhesions until years later. I finally had a myomectomy in 1991) leaving a horrible bikini-line scar which made everything tighter and more stubborn, and a vaginal hysterectomy in 1998. Both times I was told I'd feel much better but no improvement whatsoever and when I'd tell them that they wouldn't believe me.

Sorry about the long post but I can definitely relate to the gas issues! My GI issues vary now, can have watery diarrhea or sticky movements with incomplete evacuation but regardless it creates a very difficult work environment. I have thought of ending it all at times but keep hoping I will at least find a physician who will do what they can for me- whether it is surgery or trigger point therapy or even decent pain relief besides antidepressants which cause more problems than they solve. I search high and low for a primary physician who will work with me and do what they can but adhesions are not in their vocabulary. /

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End of ADHESIONS Digest 793 ------------------------------ ***************************

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