I would first like to say how sorry I am to hear of your wife's suffering. I would like to commend you as a husband for standing by her. I have a wonderful husband who does that same. He amazes me each and every day. I am so grateful to him.
I too am a sufferer of abdominal adhesions caused by Adhesion Related Disorder. I have heard doctors say that as well... adhesions don't cause pain. I did, however, meet a wise doctor who explained it differently. Yes, generally adhesions do not cause pain BUT it is the TEARING of the adhesions from whatever it has adhered to especially in internal cases that causes the pain.
I am in the middle of applying for Social Security Disability. I have been denied my first submittal before the ink could even dry on my request. That is par for the course. I have recently been assigned an examiner. We shall see. My doctor had prescribed for nurse's care during my worst times. My insurance does not cover it but the SSDI would. I spend many of my worst days alone in bed just waiting for my son or husband to return.
My husband freezes bottles of water, tea and whatever he thinks I may want while he is gone. He leaves them on the side of my bed with my medicine bag and either crackers, bread or something to keep it down. While he is at work, he calls me to say... it is time to take more medicine. Not every day is the same for me. I just take them day by day.
I currently do have a good set of doctor's surrounding me. Mr. Whitlow, I would be willing to share names of doctors I have met over the years that have been very helpful and who were willing to read about this disease and learn.
Your wife is not crazy nor is she making up the pain she feels. My pain shortly after I had a c-section in 1990. Months prior to that c-section, I have an emergency removal of my gallbladder. It left an incision the full length of my abdomen not to mention my c-sections.
What I can tell you is that cutting her more short of a blockage or internal bleeding is only going to make it worse for her. I thank God for the surgeon who told me that and said "no cutting unless it is life threatening". The more they cut her, the more the adhesions will return and faster. While it is possible to have them removed and not experience pain again, it is also more common that they return. This is the sign that she has Adhesion Related Disorder (our bodies do not know when to stop healing).
Basically, my surgeon explained it like this. He said pretend that every day you had to super glue your hands together and each time you needed to use them, you tore them apart. When you were done, you glue them back together.
That is what your wife and I endure. Whenever I use my abdominal muscles which is used for pretty much everything, adhesions tear away. Sometimes more than other times but each time is painful. Because the adhesions readhere to something else, the symptoms can always be ever changing.
I hope you will continue to support your wife. Tell her she's not crazy. Unfortunately, we just live in a world where a great deal of our medical professionals just don't want to put in the time and effort. The medical staff we need are people that love what they're doing and have a passion that burns with compassion.
Feel free to email me anytime and my best wishes to you, your wife and your family.
Sincerely,
Kandi
--- On Tue, 2/26/13, International Adhesions Society <tracy.joslin@adhesions.org> wrote:
From: International Adhesions Society <tracy.joslin@adhesions.org> Subject: Help finding a physician To: "Multiple recipients of list ADHESIONS" <adhesions@mail.medispecialty.com> Date: Tuesday, February 26, 2013, 6:24 PM
From: adhesions@adhesions.org [mailto:adhesions@adhesions.org] On Behalf Of Maikki Gonzalez Sent: Monday, February 25, 2013 2:15 AM To: adhesions-request@adhesions.org Subject: Re: Help finding a physician
What new regulations? On Feb 24, 2013 9:21 PM, "International Adhesions Society" <tracy.joslin@adhesions.org> wrote: Sender: edwardwhitlow@aol.com (Edward Whitlow) Subject: Help finding a physician
My wife has been suffering from adhesions since her C-section in 1990. Since then she has been misdiagnosed, had laporoscopies for lysis of the adhesions where the doctors looked and just closed her up because they were too dense. Her last surgery (for adhesions) was a hysterectomy after being misdiagnosed with endometriosis and a tumor (it was just a grapefruit sized mass of adhesions). We have had numerous doctors tell us that adhesions don't cause pain or that they won't do surgery unless it becomes a life threatening situation. They won't even do what we told were "routine" procedures for her rectecele or enterecele.
For the last 7 or 8 years she has been on narcotics for the pain. We have been saving for a trip to Germany to see Dr Kruschinski, since insurance won't cover it. We are been planning on summer 2014. However, just recently her doctor will no longer be prescibing pain pills due to new DEA regulations. She has started tapering down on pain meds but as she does the pain level has been going up. We now need a new doctor in New York that believe adhesions do cause pain, or a good surgeon to do a laporoscopy for her adhesions.
Any suggestions or help would be greatly appreciated.
-- Thank you, Ed Whitlow edwardwhitlow@aol.com