Living with extremely large hernia

My surgeon said mine was inoperable.  I refuse to accept that.  headed to Nashville TN for 2nd opinion.  I can't roll over in bed without bringing my stomach with me by holding it.  I can't walk to shop in Walmart.  I hold it up so I can pee and empty bladder all tthe way.  I can FEEL my stomach, intestines, etc.  And already have had my appendix and galbladder removed due to prevous surgeries that caused this ventral GIANT hernia.  They say I do not have any abdominal muscle left to to a separation component surgery either thus no tummy tuck.  He wont do surgery using current available mesh.  He said I had to wait for something to come out on the market.  I cant live 20++ years like this. I am onlly 50.   Did they use mesh?   

I had my surgery just over 2 months ago and I'm delighted with the results :-)  I was in surgery for over 5 hours but the surgeon told me the op went better than he anticipated.  He had previously told me that he wouldn't be able to use my muscles as they had torn away from the bones, but in the end he did manage to use them - I don't know if he has reattached them as I'm still waiting for my follow up appointment.

I know that he used a large piece of mesh, a synthetic one - my incision was 47cm long (hip to hip and beyond!) and had 47 staples to close it and he  also cut off the apron left over from the bulge.  My stomach is now almost flat and feels hard - I can feel where he has reconstructed my stomach wall. Please don't give up!  I'm so pleased that I sought a 2nd and 3rd opinion, if the 1st Surgeon had his way, I would still be in the same prediciment.  I really hope you can find a surgeon to help you.

Have you seen the specialist in TN yet? I live in Louisiana and have 7 huge hernias in my abdominal area from emergency exploratory surgery in 2013. The doctors here all act like there to afraid to attempt surgery, same old story "lose weight first, then we'll see what we can do" . I weigh 239 lbs. that's not bad enough to avoid surgery from what I have been reading. I look nine months pregnant.

I do get looks from people because I'm 52. Please keep us informed about your progress, TN is not to far for the drive if things work out for you. Good luck!

my hernia sounds very similar to yours and im having surgery in Jan in NYC. 40% of my intestine is outside of my abdominal wall..they say they will build up my abdominal wall with pig skin because its a mess. there will be a plastic surgeon and a general  surgeon in the OR.

Im getting really nervous because i weigh more than you do so i hope there will be no complications.im 63 and i have had this for 10 years.one of the biggest problems i have is that i broke my femur last year so im  walking with a walker already.who know what will happen after the surgery.good luck and i'll keep in touch

I'm having my op on the 6th October. I have mixed feelings about it, it's a big op, but I'm hoping it will be a success. Have you seen someone about yours?

hi debbie,

i was just reading your post from 10 months ago and my problem sounds like yours.

my story is that all along we thought it was  a lipoma,fatty tumor and i was scheduled for surgery sept 30.i had a cat scan last week and it turns out it's a hernia.i am still shocked..they cancelled the surgery because the dr who is a plastic surgeon doesnt do hernias.so i have an appt with a general surgeon in 2 weeks.

the other thing im worried about is that im very overweight.where are you located.im in NYC

rbz

Hi Paula,

It's 4 weeks tomorrow since my surgery and I'm surprised at how well I feel. I was told my surgery went better than expected and up to now I haven't experienced any concerns or complication's. I was in hospital 6 days. My incision is 47cm long and I had 47 staples - it has all healed very well apart from a 6cm section right at the edge of one side - but that too is now much better and has a small dressing to protect it as it continues to heal. I've been taking things slowly and carefully and have taken a back seat allowing my family to take care of the meals and house work which I'm sure has contributed to the healing. I've started doing small things around the house but I still feel sore on the inside which stops me overdoing things. Overall I'm very happy. Obviously it's still early days, I was told my recovery would be 3 - 6 months but I'm progressing well so far 😊

,im glad your surgery went well..how big was your hernia?im 63 and have a huge hernia.the dr said 40% of my intestines are outside of the area..

i went to a surgeon,im in nyc,and he said it will be a very big surgery and it has to be presented to the hernia conference at the hospital,before it can be done.i also have to go to a lung dr and a cardiologist to get medical clearance.then he said there is very little room in the abdominal cavity to put the intestines back in,so ha to build a new wall with pig skin.he said i will probably have to be in icu and be on a ventilator for a week.

the whole thing is so complicated and im petrified.anyway im glad that youre doing well/

rbz

Hi rbz

My hernia was low down (originated from a bikini line incision) horizontally the defect was the entire width of my pelvis and vertically it was approx 15cm at its widest point. I had 2 bulges the largest containing loops of bowel and also my bladder. I do think yours sounds much bigger than mine as everything fell back into place easily when I was lying down. I can understand why you feel anxious about the surgery, I did too, but I knew it would continue to get larger if I didn't have the surgery. My surgeon was very honest with me, he told me he had never repaired a hernia as large as mine and couldn't guarantee it wouldn't come back - he quoted a 30% chance of recurrence. I was also advised that the biological meshes would not be strong enough for my repair. All you can do is listen and be guided by your surgeon, ask lots of questions so that you can be confident in your decision, it isn't an easy one to make, I had about a year to think about it. Good luck.