You need to be aware that they do not take insurance. This means that your sister would have to pay for all of the treatment out of pocket and then get her insurance to reimburse her. Be aware that the typical insurance reimbursement for adhesiolysis (the often grueling 8-12-hour surgery to painstakingly remove adhesions) is like $2000-$3000, while the surgery costs like $20,000-$40,000. In order to pay the difference, your sister will need to pay it out of her own money, have fundraisers, take legal action against the insurance company, sue the surgeons who have gotten her into this position for malpractice, etc. If your sister were to have surgery simply to clear to obstruction without trying to clean out the adhesions, then it's very possible that the insurance company would pay the full cost of that surgery -- that's something I have no real feel for.
When your sister gets over this immediate crisis then what she needs is a referral to a pain management clinic. These are multi-disciplinary clinics run by anesthesiologists who are not worried about curing you of whatever is causing the pain, they are only concerned with relieving the pain. They vary widely in quality and general sensitivity, though, so you really need to ask around the staff at the hospital, and if possible talk to other patients to get the "inside scoop" on where the best places are. For example, your sister is depressed because she is in intractable pain and the medical professionals are refusing to treat it. The depression will magnify her experience of pain. There are some idiot doctors out there who think that in her situation an anti-depressant is all she needs. Well if that is her condition, then she needs effective pain relief AND she needs an effective anti-depressant in order to relieve BOTH the pain AND the depression. If she only gets one and not the other, she won't get relief from either the pain or the depression... The advantage of a good pain clinic is that there are both anesthesiologists and psychologists on the staff.
And have your sister come here. It is a wonderful supportive group of people who will listen to her during her ups and downs, and are chock full of useful information and experience of what works and what doesn't.
At Mon, 20 May 2002, Rosemary F wrote:
>
>I wouldn't even know where to begin. My younger sister who is now 43
>years old needs help. She suffers with very, very severe adhesions. She
>has undergone many, many surgeries (since she was 16 years old) starting
>with ovarian cysts - leading to endrometrious, leading to a
>hysterectomy, leading to many laproscopic surgeries. She is now in the
>hospital with intestinal blockages caused from these adhesions. She has
>lost a lot of weight, has almost constant diarrhea, and is vomitting.
>She also has severe abdominal pain. Her current physician does not want
>to operate as he feels she is too "hot" to open up right now. He wants
>to stretch the intestines and then possibly do surgery at a later date.
>Unfortunately, my sister has gone this route before with absolutely no
>relief. To say that my sister is extremely depressed is an
>understatement. She lives her life in constant pain. Her OB/GYN does
>not want to treat her and also told her that she would be very hard
>pressed to find another physician who would take her case on. The
>adhesions have touched her bowels, intestines, bladder - basically every
>organ in her pelvis.
>
>The reason I'm writing is to ask if anyone might be able to recommend a
>doctor in New York City or if someone could give some advice as to what
>we can do. My sister is at the end of her ropes and has even said she
>doesn't want to live this way - she's tired - and frankly I don't blame
>her.
>
>Can anyone help??
-- cathy :-)