Re: Welcome Sherilyn

From: Karla N (ifirgit@yahoo.com)
Fri May 17 09:01:47 2002


Erin, What I believe has happened is that you just recently joined the adhesions bulletin board. Have you made a post before today? I also believe someone name Sherilyn recently joined and made a post to this group. When you join this group you will get every single posting that is made. If you want to reply to someone in private you should click on their email address to do so. If you do not wish to receive every single email in this context you should go back to where you signed up at http://www.adhesions.org and select digest mode. This will still give you every single email, but you will get the posts all at one or two times a day and they will all be contained in one or two emails. By the way, welcome to our group. By seeing all the emails that are posted we are better able to reach out and help people as different people have different problems and not everybody is knowledgeable in every area. There will almost always be someone who can address the issues that you might have. The only thing I will warn you about is the fact that we are all pretty sick people...as I am sure you are. There may be times when you post a message looking for a response and nobody replies. That most often is because the people that are posting at that time don't know anything about what you are asking and the people that do just aren't capable of sitting at the computer at that time. It isn't because we don't care...because we do. There are just times when we have to take care of ourselves and not be sitting here at the computer. About a week ago I made a post to another new person and I am going to paste that into this message. I don't want to forget anything I said. This will give you all the information that I give to new individuals as they join our list. Please take the time to read it as I believe that the information could be critical to getting help. Following these steps will help get you the pain management you probably need along with getting your doctor to understand adhesions a little better. KARLA'S WORDS OF WISDOM: "I would suggest that you GO TO THE ASAP SITE ( http://www.druglibrary.org/schaffer/asap/ ) and READ all the material there. Follow the steps that they suggest; and PRINT OUT all of the information. I followed these steps myself and was able to find pain management...at that point what I got was better than I was receiving which was nothing. "If I find myself needing more now I take along my copy of the PATIENT'S RIGHTS...just in case. You should also RESEARCH the Adhesions website ( http://www.adhesions.org ). READ EVERYTHING you can get your hands on. "GO INTO THE ARCHIVES of the message board (searching takes you into the archives) and TYPE IN the name Helen Dynda. Doing this will bring up a wealth of information about adhesions, treatment...you name it. PRINT OUT this information as well and BRING IT TO YOUR DOCTOR.. "You may also wish to GIVE IT TO YOUR FAMILY MEMBERS or to any other people that you feel need to be better informed about this disease. "While you are researching this website take time to visit THE ADHESIONS QUILT. Go through and READ THE STORIES. I am sure that you will find quite a few people who have similar stories to yours. Please take the time to READ MY STORY (Karla Nygren). Also take the time to POST YOUR STORY. Each person's story helps to educate the growing number of people who are learning that they suffer with Adhesion Related Disorder."

Once again, welcome to a very loving and supportive group of people.

Karla

erin ellenbecker <ebecker0827@hotmail.com> wrote:

Everyone that is emailing me is calling me Sherilyn my name is erin and Im not sure why everyone is calling me this how can I fix the problem erin >From: Karla N
>Reply-To: adhesions@adhesions.org
>To: Multiple recipients of list ADHESIONS
>
>Subject: Re: Welcome Sherilyn
>Date: Thu, 16 May 2002 10:11:41 -0500
>
> If I had any hopes of being able to have an adhesiolysis done with the
>use of SprayGel I would have jumped on an airplane about a month ago and
>gone to Germany. The doctors are so excited about SprayGel and the results
>that they are having...at the same time no doctors would even comment on
>the Intergel. This alone speaks so much to me. Just looking at the
>results of Mary's surgery says volumes. Mary was on her third trip to see
>Dr. Korell as each time her adhesions had returned. They used SprayGel on
>Mary and yes, she did have 20% reformation, but it was in an area where
>SprayGel had not been used. In my opinion, people should be rushing over
>to Germany to have the opportunity to have the SprayGel used. I do believe
>that there is another center over there that is having very good results.
>I believe it is in Frankfurt. Hmmmm.....if I could just find some doctor
>to fix my problems I'd be there in a second...taking my daughter back to
>her birthplace. But, back to pe!
>ople rushing over there.....this is the best that there is....there is real
>hope! It is very likely that the US government will not approve the use of
>SprayGel except in GYN cases. That means that if you have had your female
>organs removed you are out of luck. Why do I make the statement about GYN
>cases?? Because the trials have only been authorized for GYN cases. The
>same thing occured with Intergel....and Intergel was only approved for use
>in GYN cases.
>Karla
> Jo Eslick wrote: It is never easy to give
>straight answers about adhesions Sherilyn, and
>all I can say to start with is, I am happy you found us, because now at
>least you know you are not alone.
>
>Unfortunately the only way to get rid of adhesions is through surgery,
>and you will find that many many doctors won't consider a surgical
>option unless the adhesions are life threatening or seriously
>debilitating due to pain.
>
>If you did find a surgeon who was willing to perform surgery to remove
>the adhesions, there is no absolute guarantee that they won't return.
>
>A few things popped up as I read your letter; firstly you haven't
>mentioned pain or discomfort, but unsightliness.... Oh yes, I see you
>have mentioned "some problems" following problems in the "female area".
>
>To be honest Sherylin, you are right, the adhesions are bulky and they
>can give you an odd shape. I recently underwent five & a half hours of
>surgery to take down adhesions and to remove what my surgeons were sure
>was an ovarian remnant & cyst. It ended up being several loops of my
>bowel wrapped around the top of my vaginal vault.
>
>I tend to lean towards pain management than surgery at this time;
>because there is no sure fire cure for adhesions. Some people have had
>some success with adhesion barriers and different countries use
>different types or brands. Many are pinning their hopes on a new one,
>which is called "spray gel", BUT it hasn't really been able to show
>enough positive results to excite my surgeon for example.
>
>I had surgery because my health was in decline & my pain levels rapidly
>increasing and surgery was my last resort. I still have a large number
>on my left side to remove, so my rummy looks very lopsided at the
>moment. I had them removed from my abdominal wall starting at my rib
>cage right down the front of my abdomen and then across to the right
>side, un hooking and removing adhesions just micro millimetres away from
>my bowel.
>
>The surgery was stopped because my vital signs were showing that my body
>had had enough surgery for that time. My surgeon estimates there is
>probably still at least three and a half hours of surgery left to do on
>the left side to remove dense adhesions to use is words "cement city".
>
>So as usual I have been long winded to get to my point, which is I have
>found a huge difference in how my clothes are fitting and had countless
>comments about the amount of weight I have lost. I looked like I was
>pregnant basically from under the breasts my stomach rolled out to what
>I would say a good six to seven month pregnancy stage.... it isn't
>perfect, but it looks better & I no longer suffer from a terrible
>dragging feeling that I had experienced prior to surgery.
>
>I urge you to think long and hard before consider surgery, do as much
>research as you can stand, ask us as many questions you like and read
>our stories on the adhesions quilt. The more surgeries you have, often,
>the worse your actual pain and condition will get.
>
>I have been fortunate to find an excellent "team" of doctors and health
>care professionals here in Australia and currently I am enjoying an
>improvement on the quality of my life, level of pain and ability to be
>more involved with my family as a mother should. However, I am under no
>illusions that I will live happily ever after, but I will take what I
>have and make the most of it for as long as possible.
>
>Once again, welcome Sherilyn to the board - I look forward to your
>future posts!
>
>--
>Love and gentle hugs,
>Joanne Eslick
>Founder Australian Adhesions Support Group
>http://www.bombobeach.com
>Australian Co-ordinator of
>International Adhesions Society
>http://www.adhesions.org
>
>--
>I am not a medical person, and all my messages are based
>on personal experience. I am a fellow adhesions sufferer
>reaching out to help others.
>
>LAUNCH - Your Yahoo! Music Experience

LAUNCH - Your Yahoo! Music Experience


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