-- KarlaSomewhere up in the stars................. My angel and me!
http://www.geocities.com/karlasfamily2001 http://www.geocities.com/princessd82000/BraydensHaven
>----- Original Message ----- From: "Em" <ewaa@earthlink.net> To: "Multiple recipients of list ADHESIONS" <adhesions@mail.medispecialty.com> Sent: Friday, February 15, 2002 1:24 PM Subject: what to say
> Okay, I have a few questions for you wonderful individuals who > continually post their love, support, and in my opinion "expert" advice. > #1-I have found such conflicting information on this one, when, and how > long does it take adhesions to reform after adhesiolysis? Adhesions begin forming immediately after surgery. They stop forming approximately two weeks later. No new adhesions begin forming after that point unless another adhesion causing event occurs. After two weeks the adhesions strengthen themselves...but as I said no new formation occurs. > > #2-What to do when the doctor who has been managing your pain meds dumps > you? > I realize that a pain clinic is my best bet, but it takes forever to get > in, any advice? Call them up and inform them I have a gun to my head? There is a site out there that you can visit. Read the entire site. It is very informative. It should also lead you to a doctor who will be willing to treat your pain. What state are you in? Anyways, go to this site. Read it, print it out and take the copies to your next appointment. Make sure you take along the copy of the Patients Bill of Rights. Educate yourself by reading the materials and knowing your rights. Then come back to the IAS and print up anything and everything you can find about adhesions. Once again read them, reread them and make sure you are as educated as you can be. When you have your next appointment present all of this information to your doctor. If he is still unwilling to adequately treat you then seek out one of the doctors from the pain site. Demand to be treated appropriately.
> > #3-Should I seriously be considering long term meds vs. adhesiolysis? > When is enough enough? I know the ramifications, but I need to hear it > again, and again. Em, I know how bad pain is. I know how you feel that you can't handle it anymore...but unless you are going to Germany or to Dr. Reich in New York don't have an adhesiolysis. Doctor after doctor claims that they can cure you of your adhesions. Doctor after doctor say that Intergel, Seprafilm or even mesh like Gortex will prevent your adhesions from reforming. The likelihood of you not having adhesion reformation after having these products placed in your abdomen is slim to none. Even if these products did work you would probably have adhesions forming in places that it wasn't used because the doctors don't know how to correctly perform surgery to prevent them. The technique that they use is so important, but because it is so time consuming and the reimbursement from insurance is so poor they don't bother. Besides....it keeps them in business. There is an exciting product that is now available in the U.K., Germany and Australia (I don't know about Canada). It is called SprayGel. It is being tested in the United States in two states. But, I wouldn't go rushing to either of these states because you have a 50% chance of it not being used in their trial periods. Why take the risk of getting more adhesions and being in more pain? I know that it is hard to wait....you think that you can't handle it anymore...that you want to die and get it over with. Back in 1999 I said the same thing...I can't handle the pain. I didn't even think I could wait 2 months. Its been 3 years and I am still here. You make it through the pain. You focus on your children...enjoying their lives. You try and help new people coming on to this board just as you are being helped and somehow you make it through the pain. Enough is Enough if you aren't going to the right doctors now. Enough was enough probably after the first surgery that caused the adhesions. Be your own best advocate. They'll tell you that you need a surgery to become pain free....but keep reading the stories on the quilt and you will learn otherwise. > > #4-What else would you call a book on vagina ovarian adhesions? Hey, I > know, the patients guidebook to a life of living hell from adhesions, no > wait it's in your head! > > I am one step away from driving my car into a cement wall. The only > reason I have not done this so far, is three incredible girls ages 9, 4, > and 2! I will not be responsible for ruining their lives. Of course you > ask them now what is wrong with mommy and they reply she's a witch and > cries all the time. > Em, I have 2 beautiful granddaughters that keep me going. I love watching them experience life and its exciting! That and them and their mommy having gone thru the death of their brother gives me a bit of strength as I don't want them to be put thru anymore.
Go to the store and buy yourself a journal or two and start writing. Write about the feelings that you are having....write about the joy that you experience being the mommy of those three girls. You will be amazed at how easily you begin to forget about some of that pain. I hope that I have helped some. Take care and God Bless.
Karla
>