Re: New doc - what to look for??

From: Karen Steward (kann@charter.net)
Thu Jun 12 09:17:11 2003


Hi Elaine, Just saw your post this morning and the answers from Dawn and Carolyn. I understand your out-of-network plight!! And very interesting that you ask if a infertility specialist that can perform laparoscopic surgery would be a good doctor to try, as the first surgeon that operated on Melissa (daughter) in the U.S. was a fertility specialist that performed lapaproscopic surgery for cases of endometriosis, etc......(I had finally decided Melissa had endo after THIRTEEN YEARS OF of IBS, Crohn's, spastic colon diagnosis') That surgery revealed a pelvis FULL of adhesed organs........the doctor was horrified at the sight of her pelvis.....he took down the adhesions and we went home thinking our daughter would be well. Soon, she was in worse condition. So, more searching..........within months she had surgery in California by a renowned" laparascopic surgeon..........two months later--she was worse. As I continued to research, I was appalled to find that surgery performed in the US with the popular CO2 to insufflate the abdomen was in fact a co-factor in adhesion growth!! Also, I learned the barriers being used in the US were NOT producing the results needed to bring a patient back to health. Melissa had developed pain in NEW areas where she had previously not had pain! I agree with Dawn, you should read your operative reports and look for indications of ADHESIONS...........and I wholeheartedly agree with Carolyn--if it is adhesions, you need Dr. Kruschinski.....as he is THE only doctor that is currently bringing patients to a pain-free, adhesion-free state!! I understand many do not have the funds to go to Germany and their insurance won't cover out-of network, or out of country surgery. HOWEVER, I have been searching for help for women facing this issue. Just yesterday I learned of a service that provides help to the patient that needs help outside what their insurance is providing. This service seems to be instrumental in fighting the insurance battle for people in desperate situations. Before you call them, see if your policy provides a PATIENT ADVOCACY free of charge. If so, get them on your case. If not, contact Healthcare Advocates @ 215-735-7711, this company charges for their services, but I have heard they are known to take dead-end cases where people have fought their insurance and turn the rejections into approvals! You can find out the cost. etc. by calling them................ Also the Patient Advocacy Foundation @ 1-800-532-5274 offers free services to patients with chronic, debilitating illnesses......Melissa's surgery was denied by our Insurance company even though Dr. Kruschinksi provided a wonderful letter PRIOR to our journey stating Melissa's weakened, debilitated condition, along with a full explanation of his surgery, technique and success rate. I am currently fighting the rejection. The women on this board that have gone to Germany and had surgery know that Dr. Kruschinski is THE only thing going for the ARD patient.......... Dawn, Carolyn, Sally, Tonya, Lisa, Melissa, and others are all reporting that he has saved their lives, given their health back, and cannot believe the difference a trip to Germany made!!!!! Many others are in Germany now and others currently returning home adhesion free! If you SUSPECT you have adhesions, please become INFORMED before allowing yourself to be rolled into an operating room in the U. S............as MOST roll out with the same problems or worse afterwards! Best wishes to you, Karen -------Original Message------- From: adhesions@adhesions.org Date: Wednesday, June 11, 2003 08:17:13 PM To: Multiple recipients of list ADHESIONS Subject: New doc - what to look for?? The way our insurance is set up, it's next to impossible to get a second opinion from outside our network. I saw my GYN this week. The one who has done two surgeries on me and thinks I'm a nutcase because of this left sided pain I have after he removed a cyst. He said he'd refer me for a second opinion. I found a doctor in a town near here that specializes in infertility and laparoscopic surgery. Would this be a good doctor to try? I thought with infertility, he might be knowledgeable in the scar tissue area. I just want someone to tell me why I hurt and if I'm going to have to live like this for the rest of my life. So far, the only thing I get is it is IBS or I need some antidepressant for "chronic" pain.
--
 
Anyhow, the GI doc I saw was really nice. He said it did sound like IBS
but he wasn't ready to say that is the diagnosis. He's running all
kinds of tests on my poo and I have to do these smears for three days to
check for blood. He's also doing some blood tests. I'm very relieved
to have a doctor that will at least run some tests and try to find out
why I'm hurting.
 
He gave me Zelnorm to try. He said that it might help and it was worth
a try. I took three separate doses and each time I hurt unbelievably
worse for three hours or so after taking it. After the third dose, I
decided I didn't want to try to keep taking it. It gave me indigestion
so bad that it hurt in my back and under my ribs on top of making where
I usually hurt feel worse!
 
I'm to the point now that I almost think it's not even worth trying to
find a doctor who is willing to try to find the answer. I guess I
figure I've lived with it this long and I seem to be doing ok...I might
as well just accept this is what it will be like forever.
 
One last question...on my last surgery report, it says "Pelvic Adhesive
Disease." I saw that after my doc appointment so I didn't get to ask,
but I have to wonder - if it is a disease they put on surgical
reports...what does that mean to the patient? And if it's on there,
written by MY doctor, why does he look at me like I'm a lunatic when I
ask if maybe that left ovary is stuck to my colon and that's why I have
tremendous pain any time gas or anything moves through that left side?
 

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