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Recurrence + incisional hernia – living a nightmare
Hello All
I’m a new member here. A year ago I was taking my kids on day trips, weekend trips, trying to show them the beauty of nature, hiking, and filled with joy just being with them. Not to mention going to work, and just living a life.
Then, I had a no-mesh open repair done in Feb 2019 on my right side. My hernia it turns out was a small, fat tissue indirect hernia. It was not stopping me from doing anything — but I thought I had better fix it as it might get worse. I understood the dangers of mesh. My BIG mistake was believing the “no-mesh” marketing meant “no-problem”.
Anyway, recovering in the hotel on the 4th night post op, and after taking my first shower post surgery, I felt a awful sliding feeling, like a thread being pulled through tissue. This lasted maybe 5 seconds. It felt like fish were swimming in my groin and was very uncomfortable. I emailed my contact to see if I should come in the next day, or take my flight, and I was told “all is good” it’s normal, and I flew home. Never having had this surgery, I figured they would know, not me.
At home, I was having a sharp stabbing pain under the incision area, and in the crease of my groin, and noticed that there was a totally numb area under the incision which is still numb. I had a follow up phone call maybe 8 weeks after surgery (I was told in my post op exam that if I have pain around 4 to 5 weeks not to call because it’s normal, so I didn’t) and I asked about that and was told it was nerves reconnecting and the feeling in the area will come back.
3 weeks later I went to HK for a trade show, and did a lot of walking. I came back in much worse shape than before I left.
I wasn’t getting much better in the days following but seemed like it was in a holding pattern so I thought I’d give it more time. I noticed on the treadmill that an area in the right side of my groin would sort of buzz after 10 minutes. Then on a nice day I went on a 2 mile hike —that afterwards I had to hold my testicles taking a shower otherwise they would hurt too much, shooting pains in my groin, burning, aching.
Looking for help where I live I saw one surgeon here who said I didn’t have a recurrence. I had a CT — said no recurrence. The Dr who did the surgery said he guaranteed me there was no recurrence but he didn’t check me. And I carried on thinking there was no physical recurrence or damage I was doing. Though I was mostly limited to hanging around the house or driving.
I drove to the Cleveland Clinic to see a well respected Dr there that deals with post hernia surgery issues, he performed a pain map. He didn’t think mine lined up with a typical patient who would need a triple neurectomy. He ordered a musculoskeletal ultrasound. I had developed what I thought was a hernia on my left side too and they worked that over. Results were no recurrence, no hernias.
The day after the Clinic visit, I went to a hernia center with a good reputation in Cleveland and this Dr immediately said: You have no tissue here. He said he thought he could help, said he’s undone and “repaired” the procedures I had many times.
I went home and considered what to do for a couple days. Out with my 2 girls, I could not make it back to my car. In bed at 10PM, I called the center in Cleveland, and got the Dr., and he made plans to for me in to have surgery in 2 days.
The result was I had a recurrence. And a large incisional hernia that extended to my iliac crest.
Now I still have a burning, pinching / stabbing pain, and get numbness in my inner thigh, am taking pentagabin to manage it. The pain goes up towards the hip but the pinching / stabbing is mostly in the groin. Stairs are getting hard. And if I move my foot, laying down for instance, I can feel tightness / movement in my groin… sometimes I get pain in my foot when I step. Or the foot goes numb.
And I need to deal with my left hernia as well. It also makes my inner thigh numb.
I am in a living hell that I could not imagine. I do not know what can be done to help, if anything. I feel like I am literally fading away in front of everyone who loves me.
I am worried about a triple neurectomy as I have read the consequences of that.
I feel like I am just fading out, and fading away.
If anyone has any ideas…I would be very appreciative…
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