surgery - adhesions

From: Karla N (ifirgit@yahoo.com)
Fri May 3 08:10:36 2002


Barbara,

I know that you are in a lot of pain. I also know that because of the pain your blood pressure may be totally out of control. Have they tested you for other things to find out why your blood pressure is so high and continues that way? Have they done the kidney work-up?

I usually respond to people writing in for help in the same manner, but since you have such serious hypertension your case is a little different. However, I am not going to change my advice. Why? Because I, too, suffer with severe out-of-control hypertension. On my visits to the doctor when I am in pain my blood pressure is often 250/160. That is no exaggeration. I have been hospitalized on numerous occasions with hypertensive crisis. It was only this past summer that doctors in California....not here in Wisconsin, suggested that my bp was out of control because my pain was undertreated. They increased my pain meds to 60mg of MScontin three times a day with liquid morphine every four hours for breakthrough pain. My bp has been much better controlled since that time with only a few breakthroughs.

As for having surgery, may I ask where you live? Pain is an awful thing to live with, but unless we can get treatment from the very small handful of doctors who are having a small amount of success with treating adhesions, we should learn to live with it. Why do I say this? Because with each surgery that we have, whether laprascopic or laparotomy (laprascopic is better), adhesions will reform worse than they were prior to the surgery. There are doctors all over this country who say that they can treat adhesions and yes, they can remove them. But, it is only this small handful (a clinic in Scranton, Pennsylvania and a doctor in Germany) that are having any amount of success. There are a number of barriers that are being used but until now there hasn't been much success with them. Now we have some hope with what is called SprayGel. It is being used in Germany, along with Canada and Australia to follow soon. We just had a ARD victim go to Germany for her fourth surgery and finally this one seems to have been a huge success...because they used SprayGel for the first time. It is not available yet in the US. They are starting clinical trials in Texas and I guess Utah. I had been told New Hampshire, but someone got updated info and was told Utah. In those trials you have a 50% chance of having SprayGel used....if those odds are good enough for you I would suggest that you volunteer or make a trip to Germany (actually the trip to Germany..which involves staying 2-3 weeks is less expensive than having surgery in Scranton and they do a second look laparoscopy to see how successful they were. If there is any reformation they take them down again.).

I guess my point is that we can learn to live with pain...through pain management. But to subject ourselves to more surgery that will probably increase our adhesions and our level of pain is a bad move. Please take time to visit the adhesions website again, http://www.adhesions.org . Search the archives...you can do a search from the same page that you posted your messages from. Type in the name Helen Dynda and you will get a large list of postings that you should take the time to read. If you can find access to a printer print the information out and take it to your doctor. Look for information that mentions ASAP. Read the ASAP website very closely and follow their advice to obtain proper pain management. (I assume that you are not receiving the proper management if your blood pressure is so out of control for no other reason other than your pain.) You have the right to receive the appropriate amount of pain management but it often means letting the doctor know that you are aware of these rights....it also may mean finding a different doctor or visiting a pain management clinic. But take the time to educate yourself regarding this disorder. Too often our doctors act as if they don't know anything about adhesions or they will tell you that they don't cause pain or the problems you are experiencing. If you can plop this information on the table when the doctor says something like that he won't be able to say much. In my case, the doctor knew...he just lied. When I gave him the materials he threw them in the garbage. Needless to say, I threw him in the garbage too....in other words I haven't been back to see him...and he was the surgeon that did 26 of my 28 surgeries that I have had since 1991.

Please also take the time to read the adhesions quilt. There are many, many stories on there...I am sure many that will sound just like yours. Please read my story and see why I am advising you not to have more surgery. I am not a medical doctor...nor do I really have much medical background (I did work as a clinic coordinator for the VA....but that didn't give me a lot of medical knowledge.) other than personal experience. The advice we can give is to avoid surgery if at all possible, unless you are going to the experts or have an emergent condition. For the most part you can avoid surgery unless you are suffering with a total bowel obstruction.

I would also suggest to you that you sign up to receive all of the messages on this group (since you are on web-tv you may wish to receive the digest version). This group is a loving, supportive group who will listen to your pain, your anger and even the whining that we all go through from time to time. There may be times when your messages aren't answered right away...or may even slip through the cracks because we all have such high levels of pain that limit the amount of time we can sit here...but it isn't because we don't care. We're plain human.

God Bless you and welcome!

Karla

Yahoo! Health - your guide to health and wellness


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