Re: Adhesions Disability

From: Dawn (whity631@yahoo.com)
Sat Aug 28 23:26:36 2010

Thank u Cheryl. They know one for sure is a remnant due to my FSH and other hormone levels, plus two pelvic ultrasounds showed blood flow just as if it where an ovary, the tech actually thought I had an ovary still until I reminded her that I didn't. The other two they aren't sure as they are located on the bowel too high up to test the way they can with the one that is on the vaginal cuff. The last surgery to remove them wad the same, high hormone levels etc and then when he finally made his way having to disect into my belly inch by in inch which this took two hours just to do the adhesions had encased everything so badly that he had to call a lab guy in to look under a microscope at every bit of tissue that he cut out as he wasn't sure what ge was cutting into! Ultimately, out of all the tissue samples from the seven hour surgery and removal of about seven pounds of tissue, seven of the samples came back having ovarian tissue inside of them!! After the surgery they shot me up against my better judgement with Lupron (a nasty drug) to keep th from growing back if he missed any and he said he was about 80 percent sure that he had gotten them all. Due to the extensive cutting on my left side there is now nerve damage that extends into my left leg.

I went last week to see my family doc to do the medical clearence and what do u know, the EKG came back funky so now I have to see a cardiologist and have a stress test before I can be cleared for surgery! I am so way beyond sick of all of this! So, now I don't know if this surgery that I have been worrying myself sock over is going to be delayed or not.

I even met with a radiation doc to see if they could be zapped and only the one in the pelvis can be with lots of risks, but not the other two. So my thinking( and his too) was why go through radiation when they may kill out one but still leave two to grow and potentially make more cysts?? Lupron can't happen again, and even if it could the side effects are sooooo bad. Not to mention that after I took it in 2006 I developed a cyst in my left sinus cavity and one on my left iris!!! Of course , they can't say for sure that it's the lupron that did it, but I believe it was, but so far they both have remained small and don't yet require surgery, but one day may. It's all so frustrating, my lawyer does seem to be understanding and is sympathetic to my situation but it seems she is of the opinion that what will get me approved if it happens is on the basis of the chronic pain. I think it's crap that they can't see how badly this damn adhesive disease messes up your life and is basically the root of all the problems, everything has stemmed from them. It seems I'll never be well again! And this is also frustrating as hell.

So, like all of us, I just try to take it day by day and deal the best I can, which most of the time anymore doesn't seem to be very well. How is your pain now and were u able to get SSDI?

from dawn

On Jul 31, 2010, at 10:18 PM, "IAS Admin \(Tracy\)" <tracy.joslin@adhesions.org> wrote:

From: adhesions@adhesions.org [mailto:adhesions@adhesions.org] On Behalf Of HERB F DIXON Sent: Saturday, July 24, 2010 10:56 AM To: adhesions-request@adhesions.org Subject: Re: Adhesions Disability

Hi Dawn, I am sorry that you are having another surgery :( This is now the 2nd time I have heard on this site about women having ovarian tissue remnants. I was told the same thing was on my left side after I had an Ultra Sound. When I went to Germany in 2005 for surgery with Dr. Kruschinski, I had a meeting with him before my surgery to go over my records. I told him what the Dr's. here said about having leftover ovarian tissue with a cyst on it. He said no, that isn't so. I was a bit shocked, and he said he would explain more after surgery. When he showed me the pics from adheliosis, he explained it was an adhesion water blister and he removed it. I'm not saying that is what you have, I just wanted to share what I had. When you see your Dr. for pre-op, or a nurse, go over your fears with them. Maybe something can be done to keep you more comfortable coming out of the anesthetic? When I went to court for my disabilty hearing, my attorney said the one thing that he felt made the difference was that I told a Dr. that I just want to be well, that I want to go back to work. I was blessed with a very knowlegeble attorney too. I also have other health issues not just adhesions. Best of luck to you. I hope that they can get it all cleaned up for you and not have to give you a colostomy bag. I hope that your court date will also be in your favor. Take Care, Cheryl

Date: Fri, 23 Jul 2010 22:36:50 -0500 From: tracy.joslin@adhesions.org To: adhesions@mail.obgyn.net Subject: Adhesions Disability From: Dawn <whity631@yahoo.com> Subject: Re: Adhesions Disability

I have an appt. Next week with my lawyer to " prepare" for my hearing before the ALJ sometime in September. I'm scheduled for yet another surgery at UPMC-Magee on 8/16 to remove a pelvic mass which they think are more ovarian remnants that have returned. The surgery is cosidered risky due to the massive adhesions and it's a possibility I could end up with a colostomy or he could open me up and say it's too dangerous to try and just close me back up. I'm really scared about this one. I know it sounds kindof bad, but I wonder if this will help my case any? With my surgery being so close to the hearing date I'll definitely have a hard time walking. Ugh! I hate that first feeling of awareness once you wake up from surgery, all the immense pain, it's so awful and of course I'm not looking forward to it at all, but no other options are left to get rid of them(the remnants). 

--
dawn

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