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  #11  
Unread 02-02-2003, 07:15 PM
I JUST WANT YOU TO KNOW!

I HAVE BEEN A ADHESION SUFFERER FOR 8YRS NOW.. AND HAVE HAD ENOUGH SURGERIES INCLUDING A TAH/BSO/APPENDECTOMY AND ENOUGH TESTS AND DRS. TO DRIVE ME CRAZY..

BUT I DO WANT TO LET YOU KNOW THAT NONE OF THOSE TEST WILL SHOW ADHESIONS THEY CAN ONLY BE SEEN ON A MICROSCOPE.. THERE ARE NOT MANY DR. WHO ACTUALLY KNOW ABOUT ADHESIONS AND WILL SAY AND TRY ANYTHING.. THE ONLY WAY TO SEE THEM IS THREW LAPROSCOPIC SURGERY.. I AM NOT TRYING TO ANGER OR UPSET ANYONE ON HERE AND SAY YOUR DRS. ARE WRONG.. BUT I HAVE BEEN BACK AND FORTH ALL THESE YEARS AND AM JUST NOW FINDING OUT AS MUCH AS I CAN ON ADHESIONS.. AND OUR FRIEND SHERI ON HERE CAN GIVE YOU A TON OF ADHESIONS, I WILL TRY AND FIND HER SO SHE CAN SEND YOU SOME OF THE SITES.... ADHESIONS ARE SO COMPLICATED AND CAN CAUSE SO MANY OTHER PROBLEMS AND YOU MUST HAVE SOMEONE WHO KNOWS WHAT THEY ARE DOING..

ANYWAYS I JUST WANT YOU TO KNOW I AM HERE FOR YOU.. AND IF YOU WANT YOU CAN PM ME ANYTIME AND I WILL HELP YOU ANYWAY I CAN...LOTS OF HUGS AND PRAYERS NICKY
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  #12  
Unread 02-02-2003, 10:03 PM
NOW what????

Hi All,
I'm here just trying to find out any experiences anyone is having with adhesions,... and I guess I found some of you!

To make a long, long story very short, I have done nothing but go to doctors for over a year. Since the Fall of '02, I have been bloating very badly, and now I'm 12 inches bigger around than I was a year ago, with no weight gain to explain the increase in size. My belly is SO distended, and I feel like I'm going to explode. I don't have much gas escaping, unfortunately, as it is all staying inside. I've outgrown my clothes, and I look very pregnant. Sometimes all I can think about is what medicines to take to get rid of the pain.

I have had MRI's and CAT scans with and without contrast, and ultrasounds, too. Yes, all of my organs are normal in size, yada, yada. But there are some "signal abnormalities" on the scans, and my left ovary is right up next to my uterus. I had a laparo on 1/2/03, and I have lots of adhesions!

I don't have a history to support their being there, at least not the typical history. Aside from surgery, PID, or endo, adhesions can also occur from abdominal trauma (I think it's sometimes called "seatbelt syndrome", as from being in a car crash and being bruised, as it were), and diverticulitis, as well as from other things. I can't remember that I had any of that, really.. I'm scheduled for a TAH/BSO in just over a week.

I've been hanging out on the www.adhesions.org board, and I'm learning a lot. Most of the adhesion barriers in use are not very good, apparently. From what I can tell, Seprafilm, which my doctor will use, may be one of the better ones. And it seems there are a lot of doctors who do not take care during surgery to minimize their formation. But it appears that a new product, SprayGel, was recently introduced in Europe and in Australia and New Zealand, and the people on that board are hailing it as a miracle. The FDA has started clinical trials of it here, but it will be at least 1 1/2-2 years before it is ok'd for use in the US. So some of the people on that board have gone to Germany for surgery at a particular clinic. There are two doctors who, I guess, are very good at adhesiolysis, done laparoscopically. AND they use a "gasless" technique; so no CO2, which by itself irritates the tissues and can cause....... more adhesion formation.

I'm nervous about my surgery, because I know that the adhesions which are bound to reform may cause a bowel obstruction or just a lot more pain. But I think I will try it. I don't know if I really have the diagnosis of ARD- Adhesion-Related Disease, and I have been in so much pain for many months. I no longer have a life! And if this surgery causes more troubles, I think I will consider going to Germany. My insurance company says it will pay if the codes are right and everything is translated into English and into US dollars. My concern is if they consider it to be "experimental". Whatever, it may be worth the cost to get my life back.

To do research on the web about adhesions, also search under "adhesiolysis" and "adhesion barriers." Visit the adhesion board and read some of the stories, and seriously reconsider further surgeries for adhesions if you've already had them reoccur several times. There is also another board on www.obgyn.net; go to the forums and do a search.

God bless you all.... sometimes it's so hard to understand the suffering we have when all we've done is try to live a good life. There must be a reason, and with luck, we'll learn why.
wr
  #13  
Unread 02-02-2003, 10:05 PM
NOW what????

PS. Please understand that at the adhesion board your e-mail address will be visible for everyone. I got a hotmail address before I posted there. But you will probably be contacted by one of the members as to how to go to Germany, if you want.
wr
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  #14  
Unread 02-02-2003, 10:27 PM
HELLO WINGED PHANTOM,,

I AM ONE OF YOUR ADHESION.ORG SISTERS ALSO... GOOD TO SEE YOU COME OVER TO THIS SIDE TO HELP THESE SISTERS OUT.. AND I SURE HOPE YOU GET PAIN FREE SOON..

I AM HERE IF YOU NEED ME.. HUGS AND PRAYERS NICKY
  #15  
Unread 02-02-2003, 10:47 PM
NOW what????

Thanks Sadly,
I think I do remember seeing your name there. I was just reading "hysterectomy problems more updates" and Sheri has a huge list of great adhesion sites. Not to take it all out of context, here is the address:
https://www.hystersisters.com/vb2/sho...threadid=89031

Do you think I'm nuts to go forward with the TAH/BSO? Like I said, I don't know if I'm really ARD. Don't I have to have something more to go on than one laparo? Please tell me what you think.

Thanks for your encouragement.
wr
  #16  
Unread 02-03-2003, 02:59 AM
NOW what????



I wanted to pipe up here and just add my 2 cents a little bit...

I am 13 weeks from my latest surgery which included massive adhesions which I have had each and every surgery. I was in major pain from a lot of these adhesions (among other things) when this last surgery was done.

My Oncologist used the interceed barrier and so far so good!!!!! I have had excellent results from my lysis and use of the barrier...So it can work and does for a lot of ladies. A lot does depend on how the doc uses the barrier. A lot also seems to depend on the kind of barrier used. Each women reacts differently and we all know what works for one doesn't always work for another and vice versa.

And to agree with the other ladies here...Adhesions really don't show up on any scans unless as (((((((Kim)))))) suggests they are very very dense. Having the CT is not a waste of time however as it can tell if anything else is going on with the bowels or bladder and other organs and would be wise to do just in case something else is going on.

again this is just my 2 Cents...



Dawn
  #17  
Unread 02-03-2003, 05:37 AM
Some more links to add to that list...

http://www.adhesions.org.uk/barriers.html
http://www.obgyn.net/all_advisors/D_Wiseman.htm
http://www.fibroid.com/instruments/adhesion.htm
http://www.allp.com/press/[email protected]

http://members.aol.com/Synechion/patents.htm

http://www.pslgroup.com/dg/2D082.htm

http://www.anagen.net/piliel1.htm

http://biz.yahoo.com/prnews/020821/sfw021_1.html

http://www.gliatech.com

http://members.aol.com/synechion/

http://www.mindbranch.com/page/catal...d32313337.html
http://www.ethiconinc.com
www.Adhesions.com
http://www.dyspareunia.org/html/pelv...revention_.htm
http://www.dyspareunia.org/html/pelvic_adhesions.htm
http://www.disability.vic.gov.au/dso...s?OpenDocument
http://www.fibroid.com/instruments/adhesion.htm
http://www.ethiconinc.com/page/patient/index.html
http://www.drdaiter.com/hyst_ecto/hyst3.html

2nd look Lap:
http://www.reproductivecenter.com/m...aparoscopy.html

Proven Adhesion Prevention:
http://www.genzymebiosurgery.com/opa...vel=2&opage=66

Welcome to SPRAYGEL :: Adhesion Barrier
http://www.confluentsurgical.com/spraygel/usa_home.htm

A Meta-analysis of Interceed Barrier Safety/Efficacy: http://www.adhesions.com/clinical_studies.html

Contemporary Adhesion Prevention:
http://www.centerforendo.com/news/ad.../adhesions.htm

GYNECARE INTERGEL® Adhesion Prevention Solution:
http://www.fda.gov/cdrh/pdf/p990015.html

Seprafilm surgical intestinal adhesion prevention: http://www.gbcrs.org/seprafi.html

CO2 laser, Harmonic Scalpel, Electrosurgery, LAP Surgery:ADHESIOLYSIS:
http://www.endogyn.com/en/endogyn-en.htm

Can Adhesions Be Prevented?
http://www.ethiconinc.com/womens_hea...revention.html

Gynecare Intergel:
http://www.ethiconinc.com/womens_hea.../intergel.html

http://www.dexterity.com/

Identifying Fibromyalgia:
http://health.discovery.com/centers/...rve_fibro.html

Most of these sites discuss Adhesion Prevention Products..as you'll see there is not a lot of sucess rate Good Luck in finding some relief & answers to your pain Please let us know how your doing...((hugs))
  #18  
Unread 02-03-2003, 06:46 AM
NOW what????

Hey Toolgrl, who was your surgeon? Are we allowed to name names here? I, too, am having surgery with one of the 4 local gyne/oncs. I'm so sorry to hear of all your problems, too, with the adhesions, and I really hope this last time will do the trick.

You made the comment: "A lot does depend on how the doc uses the barrier. A lot also seems to depend on the kind of barrier used. Each women reacts differently and we all know what works for one doesn't always work for another and vice versa. " Do you know for a fact that what works for one woman doesn't necessarily work for another? Or is the larger variable the care and skill of the surgeon? And I have read that the one barrier which is not resorbed by the body has a bad success rate.

Sheri, thank you so much for the list of sites! What a terrific resource! I'll have to check them out, but I know I have been to many of them already. If I find any new ones, are you interested in getting them? Can you believe that there are people who do nothing but study adhesions? And a month ago I had barely heard the word; I don't think I know of anyone who has them, and I must say I feel bizarre enough with their results. I pray for the thousands of women (and a few men) who really suffer from them that breakthroughs are made soon.

Thanks, toolgrl and Sheri
wr
  #19  
Unread 02-03-2003, 06:51 AM
NOW what????

(((SHERI))) I knew you'd show up. This girl knows where to find info!
  #20  
Unread 02-03-2003, 05:27 PM
NOW what????

HI WR


I went thru the Florida Cancer Institute at Florida hospital in Orlando. My surgen was great even tho my first impression was to run and hide... I have nothing but praise for her at this point.



  Quote:
"A lot does depend on how the doc uses the barrier. A lot also seems to depend on the kind of barrier used. Each women reacts differently and we all know what works for one doesn't always work for another and vice versa. " Do you know for a fact that what works for one woman doesn't necessarily work for another? Or is the larger variable the care and skill of the surgeon? And I have read that the one barrier which is not resorbed by the body has a bad success rate.
In my research and the way I interpert (sp) a lot of it, I think it is a combination of both. There have been sucesses with interceed and their have been ladies that it didn't help. The same with the Intergel. My oncologist told me that how it is put in makes a difference to her. She preferred the gel as it stays in the pelvic area longer and thus gives tender tissues time to heal BEFORE the gel dissolves. She also stated that more makes it in the body then liquid forms. ( first time she used it...it squirted all over HER )

In studys that I have read and in some journals written by various doctors Application does seem to play a big part. It has also been thought from what I can gather that the rate the barrier dissolves also plays a role. The Gel can take up 3 months to totally dissolve while the liquid (interceed) normally takes 72 hours give or take a few. Does this make a dif? I would think so personally. There are so many factors and barriers are so new I think it will take a bit to really narrow it down on why it works for some but not always for others. Is it worth a try? For me it was. I was tired of being in pain....granted I had a lot of other factors but the end result was adhesions probably caused most of them to begin with. If using a barrier would grant me some relief in the long term then I had a 50-50 shot of it working. The Stats are in the barrier's favor I think. it was my choice to try...I brought it to my docs attention not the other way around. She agreed it was worth a shot...the adhesions would come back regardless if I didn't use it.

these are just my personal feeling on adhesion barriers...So far it's worked for me and I am no longer in pain internally...Do the research...write the pros and cons for you. Look them over and talk to your doc. Make a desicion that's right for YOU.



Dawn
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