Re adhesions are back

From: kl Yahoo (klfindlay@yahoo.co.uk)
Thu Nov 23 22:26:34 2000


Dear Lynne, Cathi & IAS Friends, I am so sorry that your adhesions have returned but I am glad that some of you have had the courage to speak up. I know that the feeling on this forum is to be positive, not to make others discouraged from having surgery.

I feel that there has been too much of yippee im cured and not enough of tread carefully, take one step at a time. This is understandable when we are in so much pain. We are suffering so much that surgery seems the obvious answer.

My last surgery was also unsuccessful, and now I am very wary about going for another one. Nance, asked the other day about how many have had success and how many have had failure. I suggested that we do a survey of our own, which would help us to make the decision to go for surgery or not. I did not receive any replies. I have since spoken to David Wiseman and he is going to do a larger survey. I think it would be wise for those in doubt to wait for the outcome of the survey before making up their minds.

Like I have said before have had several adhesiolysis procedures done and have said yippee I'm cured, then after 4 years, the pain was back. My last one in Feb 99 was unsuccessful.

The first thing that you need to do is get your GP or PCP to treat your pain. When you are in pain you are not able to think clearly or function properly. Then when you have dealt with your pain and are feeling more human again. You must first look at how many surgeries you have had, this is quite important, the more you have the less successful another surgery will be. Then you have to find out what success rates particular Drs are having.

In my case I would like to hear from anyone who has had more than 5 years pain free. I am presently awaiting more statistics on the barrier methods being used. At the moment I am now confined to a wheelchair, I am relatively pain free if I stay in the wheelchair but if I stand up for a few seconds I am in agony for at least a couple hours afterwards. it will be at least another year before I would consider having surgery again. it is free in the UK but I would not consider it until I have put together some statistics to ascertain what the success rate would be. Then only when I had some proof that these new barriers were working would I go ahead with surgery.

When my pain returned after my last surgery in Feb 99 I was devastated. I told myself that I was going to die, when one by one my adhesions would slowly strangle my internal organs. I think my family thought that I was being a bit over dramatic, but that is really how I felt. I was scared, no one understood, and then I found all off you and things didn't seem so bad. I was given hope, hope that one day I might have one more surgery that will cure me. But I am not naive in thinking that this will happen overnight.

We must support the few who have been unsuccessful and not make them feel that they are being negative. They need to know that they can express themselves, without being told that they are being discouraging to others. They will be feeling at their lowest of low at the moment, not to mention their pain. We must give them hope and understanding.

Going for surgery, only you can decide, it is a big step to take, and as long as you have done some research and have not had too many surgeries then the chances of success are probably good.

If everyone with adhesions decides not to have anymore surgery, then we will never know if the barrier methods work, or ever find a cure.

All I am suggesting is that if any of you are contemplating surgery, that you tread carefully, keep in mind that you are in a vicious circle, Surgery causes adhesions, Adhesion sufferers want/need surgery, Surgery causes adhesions.

I hope this is of help to some of you who are unsure of where to go next in the battle against adhesions versus surgery.

I personally am desperate for surgery, since my failure in Feb 99, but I know it would be foolhardy of me to go ahead without some assurances of success. Therefore I will await David Wiseman's survey on behalf of the IAS & UKAS before making my decision.

Meanwhile I hope those of you like me, who have had a failure will not be to disheartened, we must have hope and pain meds lots and lots of pain meds and off course our sticky friends to talk to.

Love to you all Kath, your stickyfriend@adhesion.org.uk PS Lynne, I hope you will join the UKAS Tree of Life at http://www.adhesions.org.uk


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