Re: new here...needing info & friendship

From: Karla (ifirgit@webcntrl.com)
Thu Jul 27 15:02:40 2000


Verna,

If this were me I would expand my realms a little bit. Yes, I would try to get things taken care of before my health insurance is changed, but only if I was secure in my knowledge that I was getting a surgeon that was extremely skilled in performing adhesiolysis' and would provide me with the best opportunity to live without the pain and suffering that adhesions cause in the future. I know of only three physicians that I would feel comfortable with performing my surgery and that I know are having tremendous success rates. None of them is in Northern California. Dr. Harry Reich and Dr. Jay Redan recently opened up the first adhesion center in this country. They are located in Scranton, Pennsylvania. Dr. Matthias Korell is located in Germany. These are the only doctors that I am aware are having good results with preventing the reformation of adhesions.

As you know the worst enemy of a person that suffers from adhesions is surgery.....especially laparotomies. There are doctors out there that advertise that they can rid you of your adhesion in 2 to 13 surgical procedures. That right there is enough to tell me that these are doctors I do not care to see. In your search for a skilled surgeon you need to find out what there adhesiolysis procedure involves. If your surgeon is skilled enough he can and will perform your adhesiolysis entirely by laparoscopy. Almost all of us have been told by our surgeons that they can not deal with our adhesions via a laparoscopy because they are "so severe". Yet, I have not seen one person (there is one person....but I will explain that in a minute) that ended up having their procedure done through a laparotomy when they visited the doctors that I mentioned above....particularly Dr. Reich and Dr. Redan. I am not as familiar with Dr. Korell although I know that he uses Intergel....a barrier used to prevent the reformation of adhesions which is not available in the U.S. The one person that I am aware had to have a laparotomy was Marian Lewis....who when they did the laparoscopy found the cancer. As you have seen on this list today....Marian passed away last night. I do not think we can count Marian's laparascope a failure....as the only reason that they switched to laparotomy was to deal with the cancer they found.

When you are searching for your surgeon...if you do not wish to seek out the doctors mentioned....ask if they do clot evacuation. Ask if they leave large amounts of ringers solution in your abdomen at the end of the surgery. I know Dr. Reich and Redan take meticulous care as they procede thru each surgery. Making sure they leave no specks of blood, making sure that your insides are handled very carefully and using powder free gloves.....all known adhesion causing events. I know that Dr. Korell utilizes this same procedure. There is probably more info that I am missing. But others can fill you in on those details.

What you should do now is start to gather your medical records. Contact the hospitals where you have had your surgical procedures and request copies of all surgical and pathological reports. Get all of your pertinent medical information together...I would go as far back as your first abdominal surgery. Once you have done that let us know. If you choose to see one of the doctors mentioned we can put you in contact with someone on this list that will assist you.

It is very important that you stop the adhesion cycle now. Stop allowing unskilled surgeons the access to your body.....its yours and you need to stand up for your right to get the proper treatment.

Have you had the opportunity to read the adhesion quilt? I am sure that you can find someone on that quilt whose story is very similar to yours.

I would love the opportunity to talk with you about this.....we need to get the word out so that doctor's are aware of our disease and can lead us in the proper direction to receive the appropriate treatment.

--
Karla N.
> Hi! I've been to this website once or twice but never posted.  I am 38
> yrs.  old and dealing with adhesions.  I had a total hysterectomy 3 yrs.
> ago due to endometriosis and PID related adhesions.  1 1/2 yrs.  ago I
> had touch up surgery on adhesions because of partial bowel obstruction.
> I had approx.  8 good months after the touch up but now am back where I
> started.
>
> I have chronic pain in the abdominal area....sometimes better than
> others.  Now periodically I have bouts of constipation and my stools are
> progressively getting thinner.  I also will have episodes lasting
> several days or more with no/or very little bowel movements which
> trigger severe bloating, cramps, pain and the whole works.
>
> My regular doctor doesn't quite know how to deal with me short of giving
> pain pills and a lot of "mmmmmmmmmm's" when I describe my symptoms.  I
> have wanted to hold out on trying any more surgery for as long as
> possible.
>
> These past five days I've had another really bad spell and resorted
> (without Dr.'s recommendation) to take several doses of phospho-soda
> just to clear my intestine as much as possible.
>
> My boss told me today that due to budget restraints they are thinking
> about switching insurance companies.  This left me in a panic thinking
> that no other insurance company will have me.  Should I try to have
> another surgery before the change?? Another new development is that I've
> been having back pain for about two months.  I'm scared that I may
> developing adhesions there.
>
> I live in Northern California and would be interested in hearing about
> any terrific doctors in this area who deal with our "curse".  Plus....I'm
> also just looking for friendship from people who understand.  Thanks for
> listening....sorry this was so long.
>
> --
> Verna
> Anxious to hear from you either here at the board or at verna@mcn.org.
>

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