Bev's surgeon, Dr. Harry Reich, is no longer practicing surgery in New York City.
Instead, Dr. Reich and Dr. Jay Redan have formed a surgical partnership; and on May 1st, they opened the very first " adhesions unit" in the United States - at a hospital in Scranton, PA.
Please contact Bev at: bnb@cybrzn.com for more information about this adhesions unit.
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At Fri, 19 May 2000, Bernie and Beverly Doucette wrote:
Bev's messages at the International Adhesions Forum:
From: Bev ( bnb@cybrzn.com ) Thu, 8 Jul 1999 12:03:35 -0500 (CDT)
Having had long discussions with pathologist friends of mine as well as surgeons, it is perceived that the peritoneum will generate pain...but there doesn't appear to be pain pathways on the external intestines. I feel that this is a true perception as I did not experience any other pain at any time throughout my 14 years with adhesion disorder. In my two previous adhesional lysis, I experienced pain always in the lower right quadrant; and in each of those operational reports, I have ONE attachment to the peritoneum in that area! I ask you all to secure your own operative reports for your own study, to acclaimate yourself to the PROBABLE adhesion attachment sites that you have; and then compare those sites to your pain area. This will give you a semblance of awareness of why you suffer the symptoms that you do. Keep in mind, each consecutive surgery might produce more adhesions; but you will probably be able to get a decent idea of your adhesional involvement.
-- Bev- - - - - - - - - -
Dr. Harry Reich, M.D. New York From: Beverly J. Doucette (bnb@cybrzn.com) Tue, 8 Jun 1999 10:38:02 -0500 (CDT)
Dear Friends, I am sharing my experience of surgery performed under Dr. Harry Reich of New York; since a number of you asked about it in greater detail. Please keep in mind that this is MY surgery and that each one of us has a case history unique to each one of us. I also am stating MY interpretation of how the body responds to and creates adhesions, as I understand that physiological process.
Previous to consenting to Dr. Reich's adhesional lysis procedure, I requested a copy of it so that I could determine for myself what was being done differently than the other adhesional lysis, which I had. I also checked out his credentials with the AMA - all very outstanding recommendations. I then asked for statistics of the surgery; and, even though he has not kept a following of his patients, he does have some figures on it and it looked to be the higher % of success for non-reforming adhesions with his procedure.
I also was put in contact with a woman who had undergone his lysis last June. We talked at great length ( e-mail ) and we continue to do so. She was a wealth of information and encouragement for me...and you can be assured that I am watching her case closely as it parallels my adhesional history very closely. Dr. Reich also videotapes his entire surgery for you.
Dr. Reich's theory regarding non-reforming adhesions is: "The solution to pollution is dilution!" And he stands by that phrase yet today. This procedure is done through a minimally invasive route. One small incision in the naval for camera, two 1" to 2" incisions on each side of the lower abdomen for instrument use. Dr. Reich is the only ambidextrious surgeon in the United States - and that is a plus for us! He does a diagnostic look-around upon entering the cavity - looking for any invasive pathology besides adhesions. He evaluates the situation and then determines his plan of treatment. In the event that there are dense adhesions, he proceeds to dissect (separate) them. This is not an easy process and is very involved. I can understand why most DRs do NOT want to challenge themselves doing a lysis, which is dangerous and tedious - as the DR is working right up against and around the intestines, etc. Based on Dr. Reich's vast experience with laparoscopic surgeries, he has developed a technique like no other surgeon in the world! That is why he has the reputation as the being the best laparoscopic surgeon in the world! It was the clean-up at the end of his surgery that impressed me the most; and was also the reason that I chose to go to him and have this done! He cleans out almost EVERY piece of clotted blood that is in, around, under, and virtually all over in the abdominal cavity following the surgery! He feels that it is this residual clotted blood that the anti-bodies in an adhesion former's system respond to as "foreign" - and thus creates an adhesion over it to protect the internal organs! Now, this is exactly how our bodies defense system works!
Think about your getting a sliver ( externally of course ). What does our body's defense system do to that foreign body? It sends out the leukocytes and creates an "infection" to get rid of it - right? Internally, one of two types of defense systems kick in when there is a problem:
1.) If our appendix ruptures, we get peritonitis ( an internal infection - like pus or white blood cells that spill into the cavity ). Those white cells are responding to an inflammation in the appendix and build up and burst; but it WAS a defense mechanism as well. Peritonitis can kill us as the body has no way to rid itself of that infectious drainage; and it infects the surrounding internal organs as well. In defense our body sends the leukocytes ( white cells ) to the area of "infectious drainage."
2.) Because there is an active infectious foreign body in the abdominal cavity, our body will attempt to "CONTAIN" that poison to protect the other internal organs from damage! These white cells form a material called "fibrin," which is the sticky stuff in the blood. The fibrin starts to cover the infectious material and then you have what is called an "ADHESION!" Now, adhesion means "to stick together." In the abdominal cavity - filled with lots of organs in very close proximity to one another - what do you think will happen? Abdominal organs become attached to one another - everywhere that the infectious drainage touched!
Lets look at that same reaction now using the clotted residual blood following your internal surgery. Blood is found throughout the cavity from any area of surgery or ischemia ( areas scraped or cut - causing an area that bleeds ). In the cavity this blood dries very fast - VERY FAST! Now, 99.9% of surgeons DO NOT clean up the residual blood clots thus leaving that in, around, and under your internal organs. Your body see this blood as a foreign body and sends out the leukocytes and thus forms adhesions wherever these clots of blood are. Because fibrin is sticky, some of these organs become attached to the peritoneum ( innermost tissue of the abdominal wall ) causing pulling and inflammation at the attachment sites - thus causing PAIN and eventually a decrease in our physical mobility. That pain is from the attachment to the peritoneum. Other organ to organ attachments, if any, don't cause pain; but these other organ to organ attachments can cause:
1. Bowel obstructions
2. Painfull and difficult bowel movements
3. If some adhesions attach the bowel to the vaginal wall, these can cause painful intercourse as well.
Dr. Reich uses a procedure called "aqua" surgery. He is constantly flushing the cavity with ringers lactate ( a type of compatible fluid to the human body - like saline ); and he finds the fibrin strings and removes them - bit by bit - a wonderfull cleanup job ( on my video ). If someone would have told me he could clean up that cavity as good as he did, and I had NOT seen him do it, I wouldn't believe them! So, if you want a copy of my video, I'll send it to you!
Dr. Reich's theory is that if the cavity is cleaned of the clotted blood, the body's defense system will have less to react to - thus reducing, and possibly stopping, the reformation of PAINFULL and distructive adhesions. He also eaves 3-4 liters of ringers in the abdomen following his surgery. It takes about 48 hours to dissipate out of the body ( lots of peeing goes on ). I was not shaved, had no urinary catheter in place nor gastric nasal tube ( when I awoke in recovery ) following 5 hours of surgery; and I was back in our suite in less then 4 hours following recovery room. Sure, I had surgery pain; but I also had both ovaries removed and two tumors! One very large tumor had attached to the right side of my colon on the left side of my peritoneum - my colon was totally twisted over and attached! No wonder I hurt and couldn't have a BM on my own!
How am I now? I'm a tiny bit sore on the lower right; but that is from an organ removal. NO ADHESION PAIN, NO BACKACHES, NO PAIN PILLS, and a smile on my face that only a crow bar could remove! I had been on:
1.) Pain medication,
2.) Anti-inflammatory medication - which you need to be on at LEAST 1500 MGS a day if you are suffering adhesion pain. This medication is to help combat the inflammation from the pulling of the organ at the attachment site. You can bet you have something attached to the peritoneum at this time - and it is pulling and doesn't like that!
3.) Antacids - from irritation of the esophagus and stomach from years of drugs.
4.) Sleep/pain meds at night and last but not least...
5.) Laxatives - and you know what that was for!!
NO MORE!! I take a 500 mg chewy for calcium and Vitamin E for heart muscle - as I refuse to go on hormone replacement until I present with symptoms...and I have not yet!
Dr. Reich will state that his procedure is NOT a sure thing; but statistically, his lysis patients have shown a great reduction in reforming adhesions following his lysis. I discussed Dr. Reich's procedure with a local surgeon as well as a pathologist ( whom our son works with ) before I agreed to have it done. I also sent them my post-operative reports that defined the locations of previously lysed adhesions in both my abdoman and pelvic cavity.
During a routine autopsy, they instilled 3-4 liters of ringers lactate to raise the abdominal wall away from the intestines to determine if, in fact, an adhesion could reform and REACH the abdominal wall to attach itself from the intestine - when there is that much ringers lactate in the cavity ( that type of attachment was the ONLY cause of my pain ) - and when organ attachment involves the peritoneum, you have pain! ( I had that in both previous lysis ). It did raise the abdominal wall a good 3"-4" and in all probability, an adhesion would NOT be able to attach.
In the event you are interested in contacting Dr. Reich, let me know and I will assist you with that as well. I also can give some pretty fresh ideas in planning a trip to New York ( without getting hit by a street-selling crook .... like someone I know did! ).
I hope this synopsis provides you with the information you asked me for. If there is anything else I can do for you, please feel free to e-mail me at: bnb@cybrzn.com . Please educate yourselves to all that you can about adhesion disorder and then call for a SIT DOWN consultation with your DR. to discuss all areas of adhesion disorder. Take him information from Dr. Wiseman, the Women's Surgical Group ( http://www.womenssurgerygroup/ ), and even from the International Pelvic Pain Society ( http://www.pelvicpain.org/ ) under the direction of Dr. Perry. Many times the DR. is as scared and frustrated as we are as to what to do for you!
Also re-evaluate your medications - you MUST be taking an analgesic ( pain med ) on a consistent basis for it to be effective in your system to combat the pain. It is also imperative that you have an anti-inflammatory.
As for an MRI, Cat Scan or any other high tech medical test for a person with a history of adhesions, I feel it is a waste of money and time. A simple ultrasound and abdominal x-ray will detect any abnormal pathology in the abdomen. If you feel that you are suffering from the same type of pain in the same region - as with your previous adhesion problem - then you sure don't need anymore tests, if an ultrasound proves negative! Everything else will be negative too; and your DR. STILL cannot diagnose your adhesions as the cause of your pain - unless a diagnostic laparoscopic surgery is performed.
Your Dr. cannot say that your pain is caused by your adhesions until he sees them; but you can pretty much be assured that the pain is from adhesions - if you had adhesions before - if your tests show negative.
You can say it is your adhesions and not have to worry about getting sued. Your DR. can't! He sure might think it is from them; but he really, really cannot say it until proven! BUT, as long as all medical tests rule out abnormal pathology, you DO have CHRONIC PELVIC PAIN and that IS recognized as a medical condition; so get on a pain management routine and take it from there! A DR. HAS TO respond to your request for that!
There also is NOT any other effective pain management for adhesions: no massage ( the adhesions are located too deep within the cavity for "breaking down," etc... ) and no type of linaments or balms, which will neither reach nor penetrate the peritoneum. The peritoneum tissue is there to PROTECT against invasion of infectious and foreign matter. That IS OUR problem to begin with! So please be carefull folks with paying out bucks for things that sound good - but WILL NOT work on the adhesions!
Relaxation, massage, and such WILL help relax the adhesion sufferer - and there is something to be said for treating the emotional as well as the psychological self. In fact, it is imperative to do that!! And therapy for family members - support, education, and ideas as to how to live with one who is suffering this very painful and debilitating disorder. The impact that "Adhesion Disorder" places on a family is no different than a diagnosis of Cancer, Muscular Dystrophy, Multiple Sclerosis, or any other debilitating disorder - only that our disorder is just beginning to be focused on. How much focus it gets is up to each one of us! So learn about it!! Educate your DR.s about it!! Don't be afraid of it; because it can be effectively lived with...and, most of all, there is HOPE !!!
If a medical facility DID NOT perform medical tests on a patient, who presented with complaints of pain - and just assumed that their symptoms of pain WERE due to adhesions ( because the patient has a history of adhesions ) - what would you do if you DID have a tumor or cancer and it went undetected because of a DR. writing your pain off as due to adhesions without checking into it? I'd be pretty miffed!
My recent contacts with the Mayo Clinic indicated to me that a number of the DR.s DID in fact feel that adhesions in and of themselves caused pain. Like almost everywhere else though, they have not come up with a practical treatment or surgical procedure that would benefit an adhesion former. Mayo Clinic DR.s will work with an adhesion patient through pain management. I did start my pain management through them. ( I cannot see a basis for an "investigation" into the Mayo Clinic or any other medical facility because they perform medical tests on those of us who have a history of adhesions. )
I was found to have TWO tumors - and that was only through an adhesional lysis that I elected to have done in New York City under Dr. Reich! If he had not found them, who knows what might have happend to me. I would not allow any local DR.s to perform anymore tests on me as I was convinced that ALL MY pain was from adhesions and that there was no valid reason to put myself through testing that would have negative results for abnormal pathology - let alone pay for tests over and over again. Boy was I wrong!!!
So I have to advise all, for what it's worth, that testing is necessary and could save your life! If all tests have negative results for abnormal pathology, then it is probably your adhesions. It is then up to you to determine the next step - surgery for them or live with them and try pain management.
I do believe that the more educated one becomes to their own disorder, the better equiped they are to discuss treatment with a DR - even down to what needs to be done in a surgery, if you elect that route! I also feel that adhesional lysis, performed in a certain way, CAN reduce the amount of reformed adhesions; and, in all probability, decrease the formation of DeNovo adhesions.
I firmly believe that there are NO adhesion barriers created today that will be effective in dealing with adhesions - and I mean NONE! Once you learn what type of procedure is best for an adhesional lysis, you can discuss it with your surgeon - even dictate how and what you wish to have done for you and this disorder! Thanks!
Beverly
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Remember these words..." YOU ARE NOT ALONE! " I stated the other day that if anyone thought that adhesion disorder can't kill...ask Dr. Wiseman who the second victim of Dr. Kavorkian ( Dr. Death ) was...well I'll tell you...it was a 56 year old woman who suffered chronic pelvic pain! Our disorder...OURS!!! I suffered and still suffer from this disorder, surgery or not...I am addicted to pain meds and am withdrawing from them at this time. I am scared to death every time I eat as I think I'll get constipated and will suffer such horrible pain...BEFORE, DURING and AFTER I defecate..yes, have a bowel movement.
I live with the fear that I'll start to pee my pants again as I did for 10 years...and I am ONLY 48 years old now...so that put me at 38 years old living liked that! Every little pain I get in my abdomen fills me with fear that the adhesions are back...but then I talk to myself and run through what I have learned about OUR disoder and I settle myself down and I am better ...better for awhile.
Because I have educated MYSELF about adhesion disorder I will make it through this part of it as well, but I will always live with that fear of them reforming...it is ever present in the back of my mind and I find myself feeling anxious at times to live every minute that I have now...and I will!
I share only from experience and what I have learned living with this...I don't know anything any better then the rest of you, maybe just from a different perspective, that's all. I need to hear your perspectives also, no not for personal gains, not for any study, not really for any other reason than the fact that you have what I have; and I am so grateful for the sharing as that to me IS educating myself yet on all this new stuff. Thank-you Helen, Anne, Chris, Michele, everyone who has the courage to reach out to touch the lives of fellow sufferers like me.
Let's build this thing...and let's pray for strength and progress. As folks....I WAS dying as I lay on my couch not being able to eat, vomited all the time...had become intolerant to ALL my medications last September...couldn't have a regular BM without laxatives, and I couldn't sit for over 10 minutes without excruciating pain...went outside only 2 times in April 1999...that was to make the trip to New York for surgery...2 times.
I went from my bed to my couch...took pills, waited, oh god how I waited for 7pm so that I could take my heavy dose of sleep and pain pills and go to bed again! I remember looking outside and my husband asking if I wanted to try to take a walk...I was too weak and he knew that; but I said no as it looked like it was going to rain, it looked cloudy and not real inviting to me. You know what, friends, my husband said the sun WAS shining and there wasn't a cloud in the sky! But, by the grace of GOD, it looked uninviting to ME...and I didn't have to suffer the reality that I was just too ill to even take a walk outside. What a good GOD I have...didn't want to tempt me, I guess..but I really think he didn't want to hurt me even more!
Social life...nope, not interested...couldn't eat or sit anyway...hadn't sat at my own kitchen table in two years. If and when I ate, it was reclining on the couch! I loved my husband and 3 children so much...but I was ready to go as I was just so tired...so tired, not unhappy, not unloved...just ready to sleep forever and not lay and watch life go by, even that didn't matter anymore...I was just so tired! The thought ofdying wasn't scary...wasn't depressing, it wasn't really anything as I was just too tired to want to keep laying around vomiting and in pain so that everyone else was at peace knowing that I was still around or something...I WAS DYING!
What IS life if it isn't living? What is the highest quality of life for me? To just be able to get up in the morning and move about...no vomiting, not a lot of pills, to be able to eat. I pretty much still live on egg custard and yogart, some scrambled eggs. NO CHEESE as cheese is so constipating that I will forever be afraid of it...and I live in the dairy state WISCONSIN, so I won't be doing any commercials I suppose!
I mentioned to my husband the other day how bright the sun was shining as we were preparing to take a drive...with ME sitting up in the FRONT seat, not laying in the back with pillows...WOW...now that IS life!!! I notice all the little things now...but to me they are the big things. I went and grocery shopped last week...alone!
Two weeks ago my husband said he was getting tired and was going up to bed...I said, "Ok, honey, I'll be up in a bit when I finish puttsing here." He stopped and looked at me...it was 10pm!! He was looking at the clock, so I did too...we both started to laugh. HE was going to bed and I was staying up! Then we just hugged and I started to cry...I mean REALLY cry... you see I WAS STAYING UP!!! That's all...just something so simple; but to me it meant LIFE....I can't continue sharing right now. I'm sorry, but all this reflection causes me to have to deal with this and I can't...I just want to enjoy the time I've been given.
Please offer support, education, your stories...anything that will reach out and give hope and a chance for life for all adhesion sufferers...all who suffer pain for whatever reason...for GOD sakes...if for no other reason...for yourselves!
GOD BLESS EACH OF YOU!
Bev