From: Deb Stevens (
Sat Sep 16 08:51:11 2000

Thanks again for the insight!Helen has already sent me her sites! Thanks everyone! Deb At Sat, 16 Sep 2000, Karla wrote: >
>You need to arm yourself with all the information you can regarding
>adhesions. Perhaps you can get Helen to send you her sites, but you will
>need to ask her. Then take this information and give it to your doctor.
>Ask him if he knows about adhesions and the pain they cause. Then ask him
>(Bev did this with my doctor) all would he feel if his testicles were glued
>to his abdomen. Watch him cringe.....mine did. I got my letter.

>>----- Original Message -----
>From: Deb Stevens <>
>To: Multiple recipients of list ADHESIONS <>
>Sent: Friday, September 15, 2000 10:20 PM
>Subject: Re: HELP ME PLEASE
>> Karla,
>> Thanks for the information! Ironically, my pain specialist stated awhile
>> ago that he wasn't trained to decide if one is able to work or not due
>> to the level of pain! So I was referred to a Physiatrist and had a
>> Functional Capacity exam! I was told to be prepared to have a 4 hour
>> exam that was performed by a Special Therapist! UNfortunately, I was
>> unable to do even half the exam, I was complete in less than an hour!
>> The report was sent to Social Security stating that I am inable to do a
>> job that entaied any lifting, walking, sitting for any length of time,
>> etc. You would think that would be enough for Soc. Security. But of
>> course it wasn't! I've seen their Psychiatrist who spent a total of 5
>> minutes with me and my report is currently in the hands of the "Team".
>> I've already discussed with my family doctor the possibility of getting
>> another opinion! Maybe I'll be able to get a positive response??? The
>> person in charge didn't seem too optomistic!
>> Thanks,
>> Deb
>> At Fri, 15 Sep 2000, Karla wrote:
>> >
>> >Deb,
>> >
>> >As far as your disability goes.....put yourself through a job interview.
>Ask yourself questions that an employer would ask you. Write your reasons
>for not being able to do things down. Be very specific. Don't just say you
>have severe pain. Explain your pain. Put it down that you must lie in a
>reclining position. How do adhesions affect your life. Do you take
>narcotics for pain? Write this all down. If you are on narcotics you
>really cannot even drive to work. I don't know what type of job you
> have to analyze the work that you did and why you cannot
>continue to do it. Write everything down. Then sit down and put it all
>together. Bring it to your physician and give it to him. Have him write a
>letter using what you have told him, telling the people at your state agency
>(for disability) that you cannot work and then have him go into the reasons
>why. Once he writes it and gives it to you, if it isn't good enough....have
>him do it again. It has to be ve!
>> ry specif
>> >ic. If you are suffering from depression let him say that. We all are
>suffering from depression and if that is what it takes to get
>disability...oh well. I worked with a friend who actually wrote a letter
>for her doctor. She brought it in and he signed it right then and there.
>They did, of course copy it onto letterhead, but they didn't even bother
>retyping it.
>> >
>> >I used to work for Social Security and reviewed claims. I have also
>applied for disability two times...successfully. However, it was Bev that
>filled me in on the letter from the doctor. She had sat in on a meeting
>with an attorney (he had been my attorney the first time I applied, but this
>was not when she was involved) and he educated her on how to apply for
>disability. The other suggestion I have is..... go to your library. There
>you should be able to find books on how to get disability. I don't know the
>titles, but I do know they exist. I know of people that have used
>them....each one successful. Too often people will tell the adjudicators
>they can't work because they have severe pain. That is very subjective and
>you need to let them know just what you mean by severe. If you have any
>questions let me know.
>> >
>> >As far as your surgeries....don't allow yourself to get into that cycle.
>It may turn into something that you can't get out me (read my
>story on the quilt if you haven't already) and as you already know surgeries
>are your worst enemy given that they only make your adhesions worse. You
>need to think about visiting a qualified adhesion specialist. This may cost
>you some money, but isn't your life worth it? Many people will take out
>loans for a new car, or a new house, but would never consider it for their
>life. Dr. Redan and Dr. Reich have recently opened the adhesion center in
>Scranton, Pa and they are the only surgeons that I would consider going to.
>They use a technique that is very time consuming and meticulous. I do not
>really know of anyone that was disatisfied after they went there. Basically
>noone has gone and come back still in pain....or had their pain return at a
>later date as might be the case in the reformation of adhesions. Some
>others are goin!
>> g to Germ
>> >any, where Dr. Korell uses intergel when he goes in. He also does a
>second look procedure a little more than a week later...where he goes in and
>looks for reformed adhesions. As expensive as this may sound, it can
>actually be cheaper to go to Germany than to go to Scranton...depending on
>what your insurance pays. The trip to Germany costs approximately $6,000
>including your airfare, hospital costs, Dr. Korell's fees and the cost of
>your room for the additional time that you are there. (You would be
>hospitalized for 5 days, but be there about two weeks or more)
>> >
>> >There is help available. Don't sell yourself short and submit to
>surgeries with doctors that only think that they know what they are doing.
>Educate yourself about this disease and before you allow them to cut you
>open again ask them about the technique that they use.
>> >
>> >--
>> >Karla

>>> > ----- Original Message -----
>> > From: dstevens
>> > To: Multiple recipients of list ADHESIONS
>> > Sent: Friday, September 15, 2000 10:43 AM
>> > Subject: HELP ME PLEASE
>> >
>> > HI! My name is Debbie and I have the same concerns as many of you do!
>First how does one know when to actually go through another surgerical
>procedure and with whom? I had adhesions removed in 1988 and was painfree
>until 1998! At that time I had a Labroscopy that removed major sheaths of
>adhesions (pictures shown had no view of any organs as the adhesions were so
>thick!). Then 2 months later I had a hernia operation, the doctor used the
>Sepramesh to patch it. I had some relief for a couple of weeks, not
>painfree-just relief, then I had increased pain! Eventually I had a
>laproscopy which I had my right ovary removed and more adhesions removed!! I
>was put on Lupron therapy as there were signs of Endometriosis. I was told I
>could be on Lupron for only 6 months when it was terminated the pain became
>excrutiating again. Then this past Nov I had a hysterectomy done, which
>should have killed the pain as I was told that my left ovary was completely
>imbedded in my pelvic bone!! Th!
>> e doctor did use Interceed to help stop future adhesions! But
>unfortunately I had no relief!! Now I have been without a job for almost a
>year as the pain has held me from being able to do much activity, be it
>sitting, standing, or walking, the only position that I have relief is in a
>lounging position with my legs up!! Now my question: Will I ever be able to
>rid of this problem and get back to a normal life?? My pain specialist is
>considering placing a SynchroMed Infusion System in my body! The problem I
>see with this is the knowledge that I'll be returning for miny surgeries
>every couple of years to replce the product when the battery dies!!
>Currently I am fighting to get disability and have been worned that it will
>be a hard fight. They give me an attitude with the assessment as we know the
>old school says adhesions don't cause pain!!!! If one goes through another
>operation, which can cause more adhesions, how can it be diagnosed that it's
>adhesions causing the pain unless !
>> they go operate again to see if that is causing the pain??? As I see it,
>I'm getting into a cycle of operations to see if I still have adhesions and
>if whatever barrier is useed actually worked!!
>> > PLease help give some confidence or support that if I do have another
>operation the pain will subside!!
>> > Thanks
>> > Deb
>> >

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