And here is why..............
I had thought that at any moment prior to my adhesiolsysi last year, that I was not going to make it to Dr. reich, one of my biggest fears was that I would obstruct and need an emergency surgery with an unskilled surgeon and that was one of the most scariest feelings I everhad now that I knew about DR. Reich! I just had to make it to him, at all cost, I knew I had to make it!! Since then, I have learned so much from others who suffer ARD, and I would like to share what I have learnes on this particular subject, as it was the worst fear for me!
Fear of the unknown and pain: Bowel Obstructions: It is highly unusual that a person will suffer a full obstruction. In all the ARD sufferers that I have assisted or even knew about, only two had suffered a full bowel obstruction, and what is a a partial bowel obstruction? It is when the stool is trying to move past an area of the bowel that is probably narrowed due to an adhesion ( or any other type of restricting pathology on the bowel ) that is creating that narrowing and the stool takes longer to pass through that area. In this case, it is more painful, takes longer and will probably need some type of assistance such as laxative to soften the stool or an enema that will lubricate the bowels and allow for the stool to pass easier through that narrowing. BUT, very seldom does one actually suffer a full bowel obstruction, especially resulting in a surgical intervention. It is painful though.
To anyone hopeing to have a surgery with Dr. Redan or Dr. Reich...please keep these things in mind, and for anyone else who is looking to have a surgery with anyother surgeon, think about these issues as you venture into that surgery...
Discuss this with your surgeon any and all issues. Any question is always worth the asking, do not feel intimidated by them, or the need you have for themto NOT ask your questions! You must be free to ask every question you have, or that surgeon is NOT the right one for you! If you are scheduled for a surgery with the one you feel offers you the most in order to get as well as one can with ARD, do your best to stay as healthy as you can in order to get through the surgery and heal after it! You should NOT have to wait months and months for a surgery!!
In the event you do encounter a serious medical complication related to your ARD, you must go to your emergency room for assistance, that is just what happens, we hope we do not ever have to have a surgery again, and especially a surgery from an unskilled surgeon in the area of adhesion disorder, but it might happen, you know enough about your disease now to ask questions and not be to hasty to allow just anyone to perform a surgery on you as YOU know the implications of that now!! And you would make sure you let any surgeon or Dr. know that YOU know what you have and what they had better NOT do unless it is a life threatening situation..a surgery is no go unless they are skilled.
Just when you might think any surgeon can perform an adhesiolysios on you because they say they can..think of dear Christina Buelteman ( see Adhesion quilt ) .. Christina was 42 years old when she died as a result of her adhesiolysis procedure last January! The surgeon had performed a laporotomy on her for the adhesiolysis, as he encountered dense adhesions attaching her stomach to her intestines, he proceeded to lyse them. At one point he lysed the adhesions near the stomach and being unskilled in doing sharp dissection, he lacerated her stomach and killed her! Christina was my friend, we spent her last three months together in our local ARD support group, I was helping her to secure Social Security disability, she was very poor as she had been ill for so long, going from Dr. to DR. not being able to work, spending what little money they had on testing after testing all to no avail of finding a diagnosis for her pain, just like we all go through. Finally she joined our local support group after someone showed her my story in the local newspaper. She was ecstatic, she had finally found out that she was NOT crazy, and that she did indeed have a REAL medical disease...she also found that she was not alone in her suffering and her ordeals with Dr's, etc...she was ecstatic! But she was suffering greatly and had no money to even think about getting to Reich or Redan, she knew there was talk of opening a new center to treat adhesion sufferers, and she told me she had to have a surgery soon as she was going down hill fast. She elected to have the local surgeon do it, and she said once I get my disability, I'll start to save to get to the center in Scranton, but for now, this surgery will HOLD me over until then, and I know that the adhesions will come back, but it might buy me some time......Christina was approved for her disability, but she never made it to her final hearing, as it was the day after she died. Her family did receive two years retroactive pay as that is how long she had fought for her disability benefit, and now her husband receives the Social Security benefits for their three children..but it is the death benefit from Christina not a disability as we had worked for!
MONEY AN ISSUE? INSURANCE AN ISSUE? Lets look at why there a pre-payment with DR. Reich and Redan. ( Other surgeons I am not firmiliar with in this area )
Because insurance company's across the USA have set rates ( ceiling rates ) on most surgical procedures ( other things as well, but we will discuss a surgery here ) and they set a rate for that procedure based on what they think it SHOULD cost...so in a normal " Adhesiolysis " procedure, the usual rate across the board is about $2500 total! Now that means that no matter who the surgeon is, or the facility that it is performed in, the insurance company will pay no more then that amount..no matter how long the procedure is, no matter how skilled the surgeon or reputation of the surgeon, that is the amount they pay as that is what they feel that particular surgery should cost. That rate is based on the amount of time and the " importance " of the adhesiolysis procedure. Most insurance company's feel that an adhesiolysis procedure SHOULD be able to be performed in about 1.5 - 2 hours TOPS!!! Why, well, as you know, MOST surgeons and DR's do NOT feel that adhesions in and of themselves area a disease or cause a problem..unless you obstruct..so it is their impression that a surgeon should be able to go in, laporortomy or laporoscopically, and simply slice them apart...but they also feel that it should or is usually done in relationship to a cooperative surgery such as a hysterectomy, appendectomy or some other type of surgical procedure...and if you look and listen to other ARD sufferers, there has always been another reason or procedure done when they had an adhesiolysis..know why, Beth? Because the surgeon gets more money by performing another procedure with the adhesiolysis!! When they do a " diagnostic " procedure ( which is their way of being able to perform an adhesiolysis only, ) they get paid very low rates for their time..and adhesions take time....so most Dr's do the 1.5 - 2 hour adhesiolysis and then close you up or take out an organ or do a resection etc,,!! Not only will they not do a good job, but the hospital will not allow any more time for one as the money paid from the insurance companies is not enough to compensate for the use of the operating room, the anesthesiologist's time, etc...so everyone loses, mostly the ARD patient!!
Now, by asking for the $3000 up front in Scranton, this assures that in the event the insurance company doesn't pay for a lengthly adhesiolysis procedure if your very involved with adhesions and the surgery takes 4 - 10 hours, and trust me, they will not pay for that, , then DR. Redan, or Reich have at least been compensated for their time, skill and expertise in lysing adhesions. If your surgery is within a " normal " range of time, and all the pre payment is not utilized, you get all or some of it back. I had a 5 hour surgery, and was refunded a decent portion of it after my surgery! The $400 consultation fee is just what you pay for the experienced specialist if you want them ...a person wouldn't think twice if you were talking open heart surgery, you would go to and pay for the best Dr. in the world if it meant your life, right...well this is your life too, it is just that it is under rated as a problem unless your the victim of ARD!! Money spent is scary, sure, but money is nothing without the life to spend it on!
I have found that nothing..I mean nothing is more important then my health now...not money, not " stuff, " not the house, RV...not anything is more important then my life and being able to live it. But that is me, not the insurance company's who could have cared less when I was trying to convince them to pay a decent rate for my surgery as I could NOT just go to any surgeon to be helped..they said, " No proof this one will be any different, and adhesions aren't that big of a medical problem, " well, I didn't give a dam what they said and if it meant we morgage our house, sell our RV..I was going to Reich..as it was all I had left in my attempt to get better...
I WAS dying, maybe others are not like I was, but I needed to get better, and I had no other choice as no one else offered what this surgeon offered me. I studied his procedure, I checked into everything before I agreed to this...and now, knowing even more then I did when I went to him, I see it was the best surgical procedure for me ...but again, even though I did take the time to cover every question I had to remove any doubts I had....and you can bet I had a number of " bad " and " costly " experiences, ( if I didn't I wouldn't be a true ARD sufferer would I ? ) I knew I had to try this or I would die!
I was scared at first too, I was going to be using our savings, money saved for things that " normal " people save for, our daughters wedding some day, vacations with just me and my husband..just us two finally ( no kids!! ), college money for our youngest son, future grandchildren from our oldest son and our loving new daughter in law, siding on the house ( and it needed siding, trust me!! )...I was looking to take all that money and use it on me! You know how that feels, guilt if this doesn't work, and with all my past surgeries, Beth, what do you think was always in the back of my mind!!! I questioned myself with things like I should just let this disease take its course and if it meant I die, then so be it, at least I wasn't spending our savings on something that MIGHT not work, or maybe I can hang on a little longer and save more...maybe, maybe, maybe...and all along I was going from bed to couch wasting away in pain...can't have a bowel movement, vomiting, nauseated all the time, 22 pills a day..liver toxicity from the pills, out of the house twice in a month and that was to see a DR for prescriptions..never complaining, always excepting this suffering as I had no other choice, praying silently for help, for a miracle or to just go to sleep for good, anything to stop my suffering and constant pain....then all of a sudden I had a choice! I still suffered physically, but man, I had a choice...and it was not easy! I had very bad experiences, I trusted NO surgeon, you think it was easy for me to go to Reich...heck no! Read my story, look at what I did to screen him out, I can't beleive yet today he didn't just turn me off, I think I would have had someone questioned me like a private investigator!! ...and I was very, very ill with ARD when I did all that!! I am still gun shy of Dr's, trust me, not all things changed just because I had an adhesiolsyis, Beth..old fears are hard to break!!
I grappled with the money issue, I sure did! BUT my husband did not, it was him who said we do it, we have nothing if we don't have it together!! We would sell whatever it took to get me to Reich if that is what I wanted...if there was someone else, we would go...anyone...then this new YOUNG surgeon came to town. Of course I called him immediate to question his knowledge of ARD..and he said he was right on top of it, understood that adhesion WERE painful and he could do an adhesiolysis ..said he was very skilled in that procedure, did a lot of them, he said. I was elated! Made my appointment...THIS wasn't going to break our savings...this was good! Any thoughts of Reich went out the window...finally someone here who knew this disease and believed me!
And then I got there, we talked, I brought Dr. Reich's adhesiolysis procedure to him for discussion, he laughed at it and as he threw it on his counter he said to me, " Hell, maybe I should write up MY adhesiolysis....! " Still laughing he then started to share that it was going to be impossible to do the adhesiolysis through a laporoscopic procedure as he had to see what he was doing and if there were dense adhesions, he had to be able to navigate around to make sure he got them all!! " Hmmmm, I simply thanked him and said that wasn't for me as I was a very informed consumer and that I DID know what could and couldn't be done on me and his surgery was NOT going to be done on me "...money issue flew out the window rith along with any thoughts of HIM now!! I left his office with a gut feeling of fear for my life in his hands.
One thing that office visit DID do for me was to push me further to Reich...and then the issue of money began to fade very fast, I became determined that I was going to get to New York, and that cost was a lot higher then Scranton, and no matter what the future held in store for us financially, I was ill, I needed surgery and I needed it now!
WE knew that if we didn't try this surgery we had no future together, not for me, not for my husband and me, not for me and our children...without surgery with Reich, I wouldn't have one single chance of ever seeing our beautiful daughter, Christie Beverly married someday, I would never again spend time on vacation with my wonderful caring husband Bernie, I wouldn't be able to see our sensative, soft spoken youngest son, Jason, graduate from college, and I would never share the joys of any grandchilden from our strong eldest son, Jeffrey, a fire-fighter/paramedic and his sweet caring wife, Jenny who is also a nurse! The house, who cared about the house at this point, I wasn't even outside enough to see how crappy it was looking and I sure wasn't having visitors over anymore as that was even getting to be to taxing for me, all my family was out of town and I had stopped them from visiting us two years before..even my phone calls to them were few and far between now.. I couldn't travel without having to lay down in the back of the van, and carry a plastic bag for my vomiting, boy was I a pleasant sight to be around....it was all just to tiring for me now, ....had been for a long, long time..I was getting so tired...slept most of my days away you know! ...so who cared what the house looked like!!
There were lots of surgeons who would have done a surgery on me, you probably could find lots of them too, but none felt right, none checked out to my satisfaction.. some were TO willing, others had no real procedure or theory on adhesions, others simply had not had enough experience to even say they were skilled enough to do it laporoscopically, and most of them simply didn't even want to discuss it..thank-God for that! Dr. Reich was my only hope, and my research answered my questions enough to make it FEEL that this one was right, we decided it was a go...never threw caution to the wind, oh no, not me, I researched him, questioned him, questioned others who had surgery by him, studied his procedure, had others within the medical field study it, I hounded this man, ...I didn't throw caution to the wind, and I was NOT going to throw our hard earned money in the wind either...this had to prove itself to me as much as it could before I did it, dying or not, I still had to be as sure as possible, as sure as one can get with ARD..no promises, no games...but it was a darn good procedure, he was an honest man, never hesitated in his answers, respectful, caring, not to bold, but sure of himself in a different way then other surgeon's, cautious, I guess I would say, but he was secure and cautious..and MY only chance at a possible recovery! and by the way, remember that new young surgeon who came to town...well, HE was the one who did Christina's surgery last January!!! ...
Today, I am still very well, very happy, very healthy, ....our son graduated last year and is engaged to a wonderful young lady, Heather, they will be married next year, great job, good guy, that Jason, oh, Christie is getting married next month, she will soon be Mrs. Todd Schmadle, we had a ball picking out her wedding gown, a beautiful Victorian gown full of beads, her long dark hair fell over her shoulders, her beautiful big brown eyes were just sparkling as she chatted away...full of life and anticipation of life...just like I had been once..( God spare her what I have lived, I found myself praying again, bless her with long lasting health if nothing more, give her health! ), WE are going to be first time grandparents next July..our little grandson, Jacob, will soon be joining Jeff and Jenny, and cuddling up with Grandma and Grandpa..us together..and , yes, we want to start to take him on vacation with us as soon as we can steal him away from Mommy and Daddy..I know, just when we think we have life all figured out, kids finally grown, us off together to enjoy each other again...but we didn't have any idea how wonderful and exciting being a Grandma and Grandpa would feel like...anticipating that is so neat...like a big bubble filling up inside my chest..excitement for our future..my future...we had the house sided this spring and Bernie is building our new deck...hope its done by Monday for the wedding shower!!! Really though, I don't care if it is done by Monday, I don't care about a lot of things anymore, all I care about is time spent feeling good enough to enjoy everyminute of everyday...there doesn't seem to be enough time in a day for me now, maybe it is a little fear that this will come back, will stop me from living again, I don't know as I don't think about it, I push those thoughts away when they surface, and they do surface from time to time, but I simply say to myself that I will live each day that I feel well to the fullest, to love life, enjoy li fe, help others, be here for my family..oh yes, my whole family is coming up for the wedding next month...they haven't been here for four years as I was ill....I can't wait!!
I will simply enjoy life, because life has been given back to me because I choose Dr. Reich's procedure over anyone else, I choose his expertise and knew that to have the best would cost more....and I knew my life was worth that! I can offer more to other's by being alive...and I think I have done that, if I hadn't, I wouldn't be answering you would I?
Each person must take responsibility to ask questions, to take responsibility for what your doing in all this, I can only share my experiences, my thoughts, what I did to find peace in my decision to retain DR. Reich....you must do what it takes for you to " feel " comfortable, be wise, be cautious, ask questions, get answers, be confident and educated enough to know what your being told IS what you are looking for, go with your instincts and don't do anything with anyone until your confident you have covered every basis you wanted to cover....that is all I can say...other then, do not let money stop you from getting the best you can get in any type of medical intervention as your suffering a very complicated and underestimated disease..even WE tend to underestimate it as we have been brainwashed to believe that adhesions are not a serious threat to our lives...but we know different as we live it...and we are the ones who may die from it...no one else but... US! Go with your instincts, if your not going to go with Dr. Redan or Dr. Reich, then let your decision be based on something other then the money, as money is the least of what should be important when it comes to your health, your future and most importantly...your life, and only YOU will know if your life is really at rist of being lost to ARD at this time!
May you all find peace within your decisions and know that I keep all of you you in my prayers always! In friendship, Bev