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Recovering from the surgery!

Incandesce
Posts: 1
Joined: Feb 2007

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?
2. Where to find sound medical advice about how to *heal???*
3. How to bring new primary doc up-to-date through the scandalous past of traumatic events which resulted in the loss of a 7-year relationship with former primary doc?
4. How to address issues of rebuilding strength with muscles not compromised by nerve denervation due to this messy surgery?
5. How to determine if/when new hernia has occured? (Will anyone believe me?)
6. How to deal with the fears that I'm falling apart ... that I'll never be able to lift anything again (can someone help me with the groceries and laundry basket, please?) and that I've done "stupid things" that have compromised my body forever, and will follow me through the rest of my life?
7. How to forgive my Urologist, my brother's best friend from 2nd grade, who performed the first hugely invasive approach for the nephrectomy which set all these events in motion? He has never said he was sorry, incidentally, or even called to ask how I've been doing through all the subsequent stuff which followed his work last February.
8. I'm sorry ... it does go on and on ... how to move through the grieving about fears I've ruined my body, wrecked my health ... and how to move through the grieving ... not so much for the cancer, but for so many surgeries and compromises to surgeries which have left me feeling less than whole?

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.

poppie's picture
poppie
Posts: 2
Joined: Jul 2006

incandesce I thought i was the only one that was gutted like a fish the bulge is still there belly is twice as big but i`m cancer free 3 years now i`ll take what i have and be thankfull signed poppie

Abbyanne
Posts: 1
Joined: Apr 2007

Hello ever so grateful, my name is Mary! After reading you message I decided to join this csn group. In Jan 2007 I had a partial nephrectomy on my left kidney and now am awaiting my doctor's advice on what to do about the incisional hernia that resulted from the surgery. Yes, I am thankful to be alive, but perhaps like so many kidney cancer survivors my life took a sudden turn. Surgery and recuperating. As I have read many postings yours seemed to speak the loudest to me. I also have been enduring much pain. So I don't think you are a crazy lady. Your what/where/and how questions all seem ligitimate to me. Yes, I am ever so grateful also that my RCC was contained and that I am a CS. I just wanted to let you know that all your questions and concerns spoke to my heart and although I do not have any solid advice to share Mary, I am understanding how much emotion and pain/trama and life adjustments and wonderings there are with the complication of the hernia with a capital H. This is my 1st ever csn message, so I hope you are getting along better. God's care. Abbyanne.

Pj57
Posts: 1
Joined: Jun 2015

looking at the date soft these posts I do hope everyone has found some relief.  Mine was a partial Nephrectomy of the left kidney.  I was told they were able to save 90% of my kidney and I was very thankful and excited about that.  Next month will be three years.  I had other healath issues as well so all of this has put me on disability.  

I developed the incisional hernia.  It just seems to keep getting worse.  The pain is more intense.  It feels like it's burning inside.  I went to a surgeon not quite two years ago and he pretty much shrugged it off.  Disheartened I haven't returned to him or any other doctor about this issue for fear of, well let's be honest, the ability to pay.  You tell a doc up front you have no insurance and they don't want to help you or point you in another direction or anything.  I am on disability now but that doesn't pay all the bills.  So what do you do?  Is the hernia that painful for everyone.  I can't sleep on my side anymore.  I lost almost 50 pounds but I look like I gained weight.  If it was just the bluge I could deal with it.  The pain is getting worse and I don't wont to be told that it would be an elective surgery. And as Manry said, then it not help or get worse.

advice, help, whatever you can offer please.

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