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. It is certainly possible that there have been failures and for some reason those people have not wanted to post here. 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.
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.
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. 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!
There are people here who can give you more info about any of your options. 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.
I hope this info was helpful!
At Tue, 11 Feb 2003, Lynne Grede wrote:
>
>At Fri, 11 May 2001, Helen Dynda wrote:
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>>||| Bev's adhesion experience: Dr. Harry Reich perform her adhesiolysis procedure on April 22, 1999...Bev continues to be pain-free.
>>
>>( Continued )
>>
>>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 the cavity as good as he did -- and I had NOT seen him do it -- I wouldn't believe them!
>>
>>His 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 leaves 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 the 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 crowbar 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 ( who 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 abdomen 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 you 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 to e-mail me. Please educate yourselves to all that you can about adhesion disorder; and then call for a SIT DOWN consultation with your doctor to discuss all areas of adhesion disorder. Many times the doctor is as scared and frustrated as we are as to what to do for you! So take information to your doctor from:
>>
>>||| The International Adhesions Society
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>>http://www.adhesions.org
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>>~ ~ ~ ~
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>>||| The Women's Surgical Group
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>>http://www.womenssurgerygroup.com
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>>~ ~ ~ ~
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>>||| The International Pelvic Pain Society
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>>http://www.pelvicpain.org
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>>~ ~ ~ ~
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>>Also re-evaluate your medications -- you MUST be taking an analgesic ( painmed ) on a consistent basis for it to be effective in your system to combat the pain. It is also imperative that you take 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 surely don't need anymore tests, if an ultrasound proves negative! Everything else will be negative too; and your doctor STILL cannot diagnose your adhesions as the cause of your pain -- unless a diagnostic laparoscopic surgery is performed.
>>
>>Your Dr. can't say that your pain is caused by adhesions until he actually sees them; but you can pretty much be assured that the pain is from adhesions -- if you've had adhesions before -- if the results of your tests are negative.
>>
>>You can say your pain is being caused by adhesions -- and not have to worry about getting sued. Your doctor can't! He sure might think your pain is caused by adhesions; but he really, really cannot say it -- until it is 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 doctor HAS TO respond to your request for that!
>>
>>There also is NOT any other effective pain management for adhesions: NO massage therapies ( the adhesions are located too deep within the cavity for "breaking down," etc.. ); and NO types of linaments or balms, which will either reach or penetrate the peritoneum. The peritoneum tissue is there to PROTECT against the 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 painfull 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 doctors 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 doctor 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 doctors 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 be able to benefit an adhesion-former. Mayo Clinic doctors 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 doctors 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 will be to discuss treatment with a doctor -- 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 de novo ( new ) adhesions.
>>
>>I firmly believe that there are NO adhesion barriers available 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!
>>
>>Bev
>
>--
>Bev- Can you possibly furnish me with the address of Dr. Harry Reich? Reading your message,I identified so closely with you. You have been there and tried everything,as I have. Endoscopic surgery can not be done due to the many adhesions I have.My last surgery one year ago resulted in an emergency left ureteral reimplantation after the initial surgeon accidentally severed it durin colectomy and adhesion surgery.Since then I had 4 admissions for 7-14 days each in the span of less than 90 days.I have had pyelonephritis with hydrnephrosis had 3 stents (ureteral) and 2 central lines,aswell as a nephrostomy tube.Now I am again experiencing chronic abdominal tenderness and occasional severe pain as well as milder pain. I am not able to find a solution,and no longerhave ideas to relieve pain. Please provide Dr. Harry Reichs' address or where I can contact him. Thank you,Lynne Grede lynnegrede@msn.com
>
-- cathy :-)