Re: high hopes gone>>> Toni, you have choices!

From: Janet (
Wed Feb 9 12:36:52 2000

At Tue, 30 Nov 1999, Helen Dynda wrote: >
>I have inserted my comments within your letter, Toni.
>** At Tue, 30 Nov 1999, toni welsh wrote:
>>>>I just came from pain clinic, and she said he had just called my gyn,
>and they both think that another surgery is risky.
>Toni, another surgery is risky considering your particular case of
>>>>He has not called me yet, he has been in and out of town lately, I thought the way he talked a month ago, he was going to talk to general surgeon, and they were both going to go in and try to fix things.....
>Toni, I have the feeling that he cares too much about your welfare. He
>knows that you have gone through so much already - and he also knows
>that he isn't God and thus cannot make any guarantees (even with the
>help of a general surgeon) that would give you a better quality life.
>I know that you have a lot of confidence in your Gyn, but your Gyn is a
>human being too and has limitations as to what he is able to do. I am
>sure that he wishes that he would be able to help you, but his surgical
>expertise is not in treating adhesions.
>>>>....and use seprafilm, which is what Dr. Semertzides uses.
>Toni, it takes an expert to be able to use Seprafilm successfully. An
>expert adhesion surgeon specializes in doing surgery for adhesions. As
>a specialist he does not deliver babies! Because he has specialized in
>doing adhesion surgeries he has developed microsurgical techniques which
>cause less trauma and thus a lesser chance for adhesions to reform or
>develop de nova (new) adhesions.
>Toni, I mentioned this before that Seprafilm is very difficult for a
>surgeon to use - especially in areas where Seprafilm needs to be wrapped
>around an organ such as the bowel. Seprafilm looks like waxed paper. I
>have read that it is brittle and also that it has a tendency to stick to
>the surgeon's gloves. It works out well when used following a
>laparotomy - between the abdominal wall and the omentum.
>>>>But he does more than one surgery, I cannot figure out why he can do that and they are afraid of doing ONE more on me.
>Dr. Semertzides has specialized in doing surgery for adhesions - and as
>a specialist, he is aware of the problems connected with adhesions on
>the intestines and he has had experience in overcoming those problems.
>If the first surgery is not successful at ridding the body of adhesions,
>he follows it up with another surgery...and gradually over time he is
>able to be the victor over the adhesions...with God's help, that is.
>>>>So tired now, even went to mall and could not even stand the pain when walking, and my pain dr told me I NEED to accept it, and the counselor will teach me how to live with it.
>I would like to quote from a letter I received from a gentleman, "I
>totally agree with your understanding and experience of the best form of
>pain control, improved health and well being, comes from within one's
>inner strength. Finding that inner strength is the hardest part, as you
>know pain not only hurts physically, but brings you mentally, very
>By saying "my understanding and experience", he is referring to my firm
>belief in the "body-mind connection" - which did not happen for me
>overnight. It took many years before I was able to accept the
>"body-mind connection."
>The doctor, who helped me the most with the severe intractable chronic
>pain that had such a hold on me from 1970-1975, very patiently over time
>taught me about the "body-mind connection." He told me that the human
>brain contains many chemicals - such as endorphins, neurotransmitters,
>serotonin, etc. He also told me that the brain supplies the body with
>its own natural morphine - and that too much stress depletes this
>natural pain killer.
>>>>Here I thought they were going to try to help me....
>Unless you are ready and willing to be taught, this makes it difficult
>for them to help you. Have you heard of the expression: "Mind over
>matter"? Treating chronic pain is more than pills, more than surgery! It
>begins with learning techniques that can help you reduce the level of
>pain that you experience. This is not easy to accept - but acceptance
>is the beginning of real help.
>>>>I realize it IS a risk,as far as the more surgery they do, she said the risk for obstruction IS greater after each one. She said it is like flipping a coin, and if your're lucky it will work! I am REALLY confusd now, living on narcotics is NOT my cup of tea! HELP! I NEED advice, I am ready to see Semertzides at this point, but he DOES more than one if neded, and he does laparotomy,no matter what, I cannot get mine done laparoscopy anymore anyway, so it does not matter, I am about 40 minutes from him!
>Toni, it is not my purpose to give advice, because I am not a medical
>professional. I have just given you some things, things I have
>experienced and learned, to think about. You do have choices that only
>you can make, such as:
>1. Allow yourself to work "with the therapists" at the pain clinic -
>learn techniques to help reduce your level of pain, etc.
>2. Continue to wait for your Gyn and a general surgeon to help you.
>3. Contact Dr. Semertzides for an appointment and let him guide you
>regarding your treatment for adhesions.
>4. Wait for 6-8 months with the hope that Intergel, a gel adhesions
>barrier, will be approved by the FDA.
>Finally, Toni, best wishes to you as you make a decision as to what you
>plan to do!!
>The 15th century proverb which summarizes the purpose of medicine is:
>* To cure sometimes, to relieve often, to comfort always. *

Hi Helen/Toni and everyone

I just want to say that I really respect Helen and I think she has made some good points. I do have a problem fully accepting the mind over matter (I know thats a grossly simplified way of saying it) that is spoken about so much.

The reason for this is that adhesions do casue probles other thatn pain which I think can be forgotten. If adhesions are wrapped around the bowel/bladder etc surely they NEED to come out in order for the organs to work properly again. I feel that pain,especially chronic pain, is an important indicator that something is going wrong.If we mask the pain how do we know if things are getting worse?

I sometimes feel that if we go down the path of accepting what doctors tell us about pain management rather than pushing for the medical profession to train doctors in the removal of ashesions in complicated cases then we are not getting the best care.

Being in a similar situation to you Toni, I feel totally disheartened that so few surgeons can cope with adhesions. But I am putting what little energy I have into finding one and getting referred to him/her. I am aware of the risks surounding further surgery but can not see I have a choice. At the moment I have no life.I am in limbo.

Helen/Beverley I hope you dont take offence by what I said about pain management - I dont want to come across as closed minded - I just have reservations.


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