Feb 05, 2007 - 9:48 pm
Hello everyone. I'm new here, so please be patient with me as I learn how to navigate around a site that is is new and unfamiliar.
I had an open flank surgery for kidney cancer a year ago -- and while the surgery is/was considered a "big success" -- recovering from such an invasive procedure has been a nightmare.
Last summer I developed a large incisional hernia, and it took weeks of begging and pleading through tears to get my doctors to believe me. (Doctors don't like us when we self-diagnose, right? When will that ever change?)
Finally I had the surgery to repair, and this was much worse than the nephrectomy.
Of course, it also left me with a hole in my middle and a patch of Goretex mesh running from one of my ribs to the top of my iliac crest.
Two and a half months after this repair, I have ripped again. Honestly, it felt like a 'tent peg' being "ripped out of the earth," and I think the Goretex has detached from the iliac crest.
To make a long story short, I went through a period of ridiculous pain with accompanying spinal spasm which reduced me to walking on my hands and knees, and brought me to the ER. I also went through a nightmarish episode with pain narcotics that nearly put me over the edge.
Trying to secure appropriate medical attention following this "compromise" to the "repair" has been difficult. I told my primary care doc that I didn't feel supported by her, and she resigned. (!)
My surgeon seemed to think I was more concerned about the "loss of symmetry" to my figure and -- D'oh! Dummy! I'm afraid this thing is going to bust open again and interrupt a third year of my teaching!
What to do!
Surgeon has washed his hands of me, and ... through all of this ... I've had to generate a "made-up/artificial" return-to-work date, which will bring me back to the classroom in March; and I don't feel ready! (I'm a teacher, and the work is very physical.)
1. What to do, how to handle issues of concern without sounding like a crazy lady?
Honestly, if I could find an "Incisional Hernia Hotline" or "Hernia Chat Group," that's where I'd go; but as these issues started with the renal cancer, I'm hoping I might find help, advice, support and guidance here as to what to do next.
Current "bulging" from new "thing," which apparently is not a hernia ... is painful and worrisome. I also feel tearing inside, and generally ... am fatigued and uncertain about the "back to work" thing ... which I don't know how to forestall.
What to do?
This is all unfamiliar to me, and I feel so let down by my doctors, starting with brother's best friend. How I WISH I'd known better and elected for someone else who had talent, skills and know-how with laparoscopic approach!
If any of these issues speak to you, I would so appreciate some feedback.
On the otherhand, if this writing bothers you, just skip over it! I am grateful, of course, that there is no current evidence of disease, that my RCC was well-contained ... and in many ways I am blessed (despite feeling so carved up). Ugh. What to do?
Does anyone have experience with issues such as this?
Ever so grateful, my name is Mary.