Re: New to this forum & need HELP!

From: LNewman@milbank.com
Mon Jul 31 09:50:38 2000


First, good morning Suzanne!!!! Welcome to your new home!!!!!! On behalf of everyone, we welcome you in as a sister with ARD, and you can count on all of us to do our best to support you with your pain and hopefully guide you to some helpful tips that may ease your pain (and your mind). Helen is the life-line of all the sites you could possibly want, and she lists all day long so there is bound to be something there you want to read and/or print out for future use. I have started journals with sites, in one; letters back and forth from sisters and brothers with ARD; and helpful tips and hints for those times when nothing others without ARD can say, or say wrong, or things that someone has tried that might help someone else.

Now, with regard to your questions: (1) The back pains...... I suffer from pain in my back because I had spinal surgery to try and cut-off the pain transmitters but it did not work (at least not like they had hoped because too many nerves were trapped, and some of the nerves re-attached themselves), and I had to learn to walk all over again. Now, adhesions have formed on my spine, I walk with a limp, and sometimes it feels as though someone is hitting my lower back with a bat. My calves are in constant pain. I have swelling around my ankles and tops of my feet. My Internist does not know what it is. He speculated that it was the morphine; I assured him that if that were the case, I would have been swelling a long time ago, not 5 months ago. Explain your type of pain. (2) My job has a masseuse come in every other Wednesday so for Mother's Day, my husband gave me $30 to have a 1/2 session with her. At first, she gave me a very light rub-down and I mean to tell you....... whew, blew my mind!!!! Then she started roughing me up a bit. I told her she was hurting me, but she said that my muscles were all tied up in balls, not knots and she needed to be a little rough to get them out. I asked her if this was what deep massage means, and she said yes. Then she took out a machine and used it on my back. At first it felt great, them pain came, then it went away. After I got off the table, everything seemed to be fine..... until I got home. I took my shower and went to bed. When I got up the next morning OUCH A MILLION TIMES!!!!! (And yes, for the internet-correct, I am yelling as I was yelling when I got up, and I know the neighbors had to hear me.) I also when to an acupuncturest who told me there was nothing he could do for me. Bummer..... (3) I think everything you have asked after all of this can only be answered by your own body. Different things work for different people, so that leaves you with to process of deciding for yourself, what works for you. I am on a morphine pump that is inserted in a pocket they made for me, under the skin on my left side. I have not made my level yet for pain control, and that is due to the fact that I am very obstruction-prone, having several operations for that very reason. I have several lysis of adhesions and re-section of bowel. My pain has increased greatly, and as of yet, nothing is being done. On the 25th of September, I am going to the best of the best to have surgery that will hopefully cure me. Maybe you should give them a shot. They truly are exceptional!!! Just ask around and everyone will tell you if you can afford it (I really couldn't -- I took the money out of my 401K which totally consumed it -- I have to start all over again), you need to go. I am just thankful to God that I had the money to begin with. I didn't feel like that in the beginning though, I was hoping they would drop there fees down a bit, even though I know it is a difficult surgery which requires that they be better than anyone and they should be paid according to that but, in all honesty, very few can afford it, and they will be the ones to continue to suffer. Anyway, keep in touch okay? Luv ya!!!!!

> -----Original Message-----
> From: living@nwlink.com [SMTP:living@nwlink.com]
> Sent: Monday, July 31, 2000 9:42 AM
> To: Multiple recipients of list ADHESIONS
> Subject: New to this forum & need HELP!
>
> Hi, I'm new to this forum. I am so glad I found you! I had hyst in 6/99
> for endo, but endo returned. I then had lap surgery with an endo
> specialist in 2/00. I am endo pain free, but my adhesion pain has
> returned. I felt so good after each of the surgeries. But slowly my
> back stiffens up. I had severe endo with lots of adhesions. My back is
> stiff, like loss of motion with pain running down my left leg. I have
> seen many back/spine specialists and they could never find anything
> wrong with my back. Now, I know for sure, the pain I am feeling is from
> adhesions. My question to all of you is what can I do? Stretching seems
> to give me temporary relief. Has anyone tried yoga, how about deep
> massage, how about acupuncture? What are the best medications to take
> for adhesion pain? Also, does the pain get worse over time or what? If
> anyone can help me at all, give me some alternative treatments for the
> time-being, I do know that another surgery may be inevitable. Thank you
> very much. suzanne
>

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