The increase in size of the mystery lump on my back just recently got bigger and not surprisingly became too much for my pain meds to handle. Off we went to Dr. Skinner for a reassessment and the decision that something must be done about it. We weren't entirely sure what that something was going to be, you see I had already seen general surgery, ENT surgery, and one dermatologist about them. All these specialist doctors agreed something was going on but declined to do anything about it. We fixed on derm this time - to see if persuasion might get us somewhere. We held out a small beacon of hope that a new dermatologist might do what we had asked others to do - a biopsy.
I have at this point had a CT scan and a ultrasound of these lumps, both showed nothing but localized swelling. Dr. Skinner, taking the EDS diagnosis into consideration had put forth the theory that what was happening was my connective tissue in certain spots around my body was breaking down and leaving pockets of fluid to fill their place. There were a few flaws to this theory - fluid had never shown up on any test and we weren't sure it would show up on a biopsy either. Then there was the "if this is happening - what is there to be done about it?" thing. The answer to that question is nothing. My connective tissue would probably continue to deteriorate and only God knows what might happen as that progressed. The other problem was that in all the reading we did about patients with EDS, there was absolutely no literature about this sort of thing happening. Was I really just having an extremely rare issue going on? It certainly wouldn't have been the first time but the lack of literature was disturbing.
About 3 - 4 weeks ago, I saw the new dermatologist. Well, first I saw the PA, who gave me antibiotics that I had a severe drug reaction to. Even though I was clear with him that I had a reaction to an other antibiotic in it's family, he still prescribed me it and I ended up in bed for 5 days recovering. I really hate it when docs don't listen - believe me I wanted to rip the guy's head off after I went online and found they were the same family of drugs. Anyway, since the PA had no clue what was going on, they sent me along to the doctor the next week.
The day before the appt, Laurie and I had a discussion about what I really wanted to have happen at the appt and she voiced her concerns about following through with a biopsy in that very sensitive area if we really weren't going to receive any helpful information about what's going on. I disagreed and went into the appt the next day determined to get to the bottom of this, but with the addition of making sure this doctor thought we might get some real information about the lump.
At the appt the next day, I had a punch biopsy. They took about a 1/4 of an inch of tissue and stitched me back up. A few days later, we found out that the lumps are lipomas. Lipomas are benign tumors of the fat tissue. The way that they are presenting in me is totally off the textbook lipoma symptoms. (Big surprise, huh?) Laurie and I took a very nice sigh of relief - they are treatable. Unless the others become a problem for one reason or another, I will only have the lipoma on my back removed. This also gets us into murky waters...
You see, two years ago, before the lipomas started, we had been pursuing a blood disorder that I have. We had done two rounds of testing and didn't yet have an answer, so my hematologist told me that we would leave it be for awhile, but if I needed surgery or to be put on birth control, that we needed to get to the bottom of it, as my blood doesn't clot the way it's supposed to and I bleed lots and lots. So, we are slowly working towards and end. I got my heme blood work done yesterday - trying to figure out if I am missing a clotting factor or have an antibody to one and will see the doc next week.
Meanwhile, we are trying to decide who to take the lipoma out. Because of the EDS, my skin doesn't heal properly with stitches and either the stitches pull apart and/or I get a horrible scar. The only surgery I've had that has left me with a normal looking scar was my plastic surgeon, who removed my basal cell cancer from my left cheek. We are setting up an appt to plead with him to do the surgery. It's such a large portion of my back and he's done the best with my EDS. So we are keeping our fingers crossed, hoping and praying that he will do it, as he normally wouldn't do a surgery like this since it's not really reconstructive or in the typical "plastic surgery" treatment area. We'll see.
Just as a side note, having all of these lipomas pretty much seals the deal on the MEN 1 diagnosis. Lipomas are frequent in patients with MEN 1 as well as a bunch of other tumors, both benign and not. I'm really praying that as the disease progresses, I do not end up with the carcinogenic ones. Time and God will tell. Anyways, an answer and hopefully a solution (lipomas tend to grow back) are a good thing. I'm glad I risked the biopsy because life without the pain that the lipoma on my back is causing would be wonderful.
Well, I'm sick today - coughing, fever, sore throat, etc. - so I should probably be headed back to bed. I'm sad to be missing horsemanship today but needed the rest today to get better as fast as possible.
