Re: ( 2. ) Bev's Story about her adhesiolysis....April 22, 1999.......>>Bev's corrections<<...(correct now)
From: Helen Dynda (email@example.com)
Fri Feb 14 15:27:55 2003
After reading this I noticed that I had reversed Bev's comments to Cathy's words in 1a.) and 2a)!! Now Bev's replies are correctly placed.
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When I noticed a few incorrect statements in Cathy's message to Lynne Grede (Re: ( 2. ) Bev's Story about her adhesiolysis....April 22, 1999), I asked Bev to correct the information that needed to be corrected. Bev's corrections are numbered 1 through 6 (below).
Bev's corrections are NOT in any way meant to "put down" Cathy for the comments she made to Lynne Grede!! I've capitalized Cathy and Bev's names - hopefully, to make it easier to know who said what.
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Re: ( 2. ) Bev's Story about her adhesiolysis; From: cathy (firstname.lastname@example.org) ; Wed Feb 12 09:03:47 2003
CATHY: Lynne, this is an old message and there have been many exciting developments since then. First of all, at least among the sufferers of the most severe forms of ARD who hang out here, Bev was one of a very few lucky ones.
X> 1a.) CATHY......Dr. Reich may in fact be the best laparoscopic surgeon in the world; if he is not the best, then he is certainly in the top five.
X> 1b.) BEV......Dr. Reich is definitely among the five top laparoscopic surgeons in the world. Dr. Reich IS number one--at the top--the most skilled laparoscopic surgeon in the world. NO other surgeon compares to him! Fact!
Dr. Reich states that Dr. Mario in Italy is the best laparoscopic surgeon he has ever had the pleasure to perform surgery with. Even so it has always been Dr. Reich's name that I've heard mentioned over and over again among international laparoscopic surgeons, who always mentioned Dr. Reich's name--in awe of this great surgeon and man!
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X> 2a.) CATHY......But while the sort of meticulous surgical technique that he performs is necessary to prevent the reformation of adhesions, it is rarely sufficient."
X> 2b.) BEV......Dr. Reich's adhesiolysis procedure includes "a very meticulous surgical technique" that IS sufficient and has been proven to be sufficient by the many successful adhesiolysis procedures he's performed for many ARD victims.
Why don't these people post messages on the IAS Message Board? Because they're now enjoying life! Why would they want to be drawn back into the fold of ARD pain and suffering--when they were able to get out of it!
Whether they've had their adhesiolysis in the United States or in Europe, very few of them continue to post messages on the IAS Message Board. Very few of them volunteer to assist those, who continue to suffer! I know a number of ARD sufferers who ARE now well enough "to live"...and they are NOT posting or reaching out to offer help or hope to those still waiting to be helped!
While they are in the midst of seeking medical intervention for adhesion related disorder (ARD), they say that once they are well (if that happens to them) they will never desert their IAS sisters and brothers; and I say: " If you get well enough to live, go for it...live!" Why do I hang around...beats me! But I do what I can, which maybe is not much!!
Someone mentioned that Confluent Surgical's Spraygel will be approved in 6 - 18 months; but that is NOT true!! NO ONE knows when or if it will be approved in the United States. And, even if it is approved, NO ONE can know what specific stipulations the FDA will place on it! Remember when Intergel was approved -- and how happy all of us were? But then we learned that the FDA had approved Intergel...for ONLY laparotomy (open abdominal procedures)!!
When Dr. Reich lyses adhesions on the small bowel, he does a very meticulous lysis of adhesions...in, around, throughout, everywhere within the loops of the small bowel where adhesions are found. In the process of lysing adhesions, abrasions or "tissue scrapes" result -- much like what happens when you skin your knee (a crude example to be sure; but you get the idea!).
Confluent's SprayGel has NOT been tested to be applied to the small bowel at the close of an adhesiolysis procedure. (In my case adhesions had adhesed many loops of my small bowel together -- adhesions on top of adhesions -- like someone had dripped wax all over and throughout my entire small bowel.)
So far SprayGel has proven to be the most effective form of adhesion prevention in pelvic surgical procedures. When adhesions have attached internal organs to the peritoneum, the application of SprayGel has been shown to prevent the formation of adhesions.
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X> 3a.) CATHY......For Bev, and also I think Karen Carter, the surgery that they had cured them of ARD. There may be others as well.
X> 3b.) BEV......In her email to me Bev said: "When Dr. Reich was performing surgery at Columbia Presbyterian Hospital in New York City, three of us from Marinette, Wisconsin had successful adhesiolysis procedures with Dr. Reich as our surgeon. As a result of our adhesiolysis procedures, ALL three of us are well yet today!! We are in constant communication and see each other regularly. We consider ourselves to be among the most blessed of people walking this earth!! Our smiles alone project that!"
CATHY: But several other people had surgery with Dr. Reich or one of his colleagues (Redan and/or Gerhart) and while they are absolutely convinced that the surgery was meticulous, their adhesion pain returned within hours, days or sometimes a few months." That's the bad news... The good news is that in November of 2001 the European Union approved the use of a new adhesion-preventing barrier called spray-gel. Helen Dynda, who is the backbone of this group, had surgery with spray-gel about 13 months ago, and has been adhesion-pain free ever since. Many people here have been burned multiple times by the "new great thing" that has then not panned out, and so we are naturally quite hesitant about jumping on any new bandwagons. A few were in such desperate shape that they thought it worth the risk. Several people had surgery in the spring and summer and last fall. Since the first of the year we have had a flood of members start.
What is astonishing is just how successful spray-gel has been for the ARD sufferers here.
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X> 4a.) CATHY......It is certainly possible that there have been failures and for some reason those people have not wanted to post here.
X> 4b.) BEV......Adhesiolysis procedures in Frankfurt have been 99% successful--based on a second look laparoscopy (SLL) 7 days after the inital surgical procedure. A few second looks have shown scant reformation or de novo (new) formation; but not at Frankfurt!! Only a high quality meticulous adhesiolysis--with the application of adequate SprayGel--will produce the best results following an adhesiolysis procedure.
Ok, the next complication is that spray-gel is not available in the US. (It is in clinical trials, and it will take time before they will have a scientific answer to the question how effective it is, especially how effective over the long term. Europeans have a different standard for approving medicines -- they approve things which have been tested as safe, and let the effectiveness questions be sorted out after approval.) But it is available in Europe, the UK, and Australia. Two of the best laporoscopic surgeons in the world are in Germany, and they use spray-gel, and that is where the members of this board have been going for surgery.
CATHY: This is a support group, not a scientific study, after all. But on the other hand most people were not particularly shy about posting their failures with earlier adhesion surgeries. When I say astonishing, I say that from a professional point of view (I do programming for applied statistics applications.) But we now have somewhere between a dozen and 2 dozen of our members have surgery with spray-gel, and every one has been adhesion free! True, probably 2/3 of that group has had surgery recently enough that it is too soon to declare victory, but we do have people who have had many months adhesion free, too.
The health system works differently in Germany than here. They will accept patients from out of Europe and take cash, just like the US will. But procedures are charged for differently. In the US the price of every surgery has to pay some of the doctor's student loans back, and has to pay part of the cost of building the hospitals and training nurses and doctors and the office overhead of the doctors and the malpractice insurance premiums of everybody involved. In Europe the taxpayers fund the building of hospitals and training of doctors and nurses and they limit malpractice liability by both law and custom. So when the Europeans come up with a price for an out-of-country patient they charge only for the things that the particular individual patient uses, not the common things that you share with other patients.
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X> 5a.) CATHY......The price for an adhesiolysis with spray-gel has been costing people approx $5000-$7000, depending upon airfare and exchange rates. As we can all attest, you can spend that in deductibles and co-pays for an operation in the US that is covered by insurance!
X> 5b.) BEV......Costs for surgery at Frankfurt are NOT as stated above!! If you are interested in seeking surgery at Frankfurt, Germany, you will need to ask Dr. Daniel Kruschinski what the current rates are.
CATHY: There are people here who can give you more info about any of your options.
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X> 6a.) CATHY......You may choose to wait until spray-gel is approved in the US (expected in a year or 2) and then have an operation that is covered by insurance.
X> 6b.) BEV......Victims of ARD can wait...and wait...and wait. Well, some victims of ARD can--and will try to wait--unless they have a bowel obstruction first...or they end up having to have a laparotomy...or they develop a hernia...or they will wait until they can't have surgery---even when and if Confluent Surgical's SprayGel adhesion barrier becomes available in the United States. (SprayGel is NOT available in the United States!!)
Ask Karla Nygren or Tammy Habhegger how easy it is to secure an adhesiolysis--when you're herniated from a laparotomy!! The answer is, Surgeons will adamently refure to perform an adhesiolysis!!
You can't ask Marian Lewis, Christina Bueltemann or Tammy Wynette, to name a few; but you can read Marian's and Christina's ARD stories on the IAS Adhesions Quilt. You can read Tammy Wynette's ARD story at the following websites:
http://www.adhesions.org/forums/ADHESIONS.0106/0750.html = (part 1)
http://www.adhesions.org/forums/ADHESIONS.0106/0751.html = (part 2)
http://www.adhesions.org/forums/ADHESIONS.0106/0752.html = (part 3)