Recurrence with incisional hernia – living a nightmare
01/03/2020 at 3:35 am #12108
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…
01/03/2020 at 7:09 pm #20621JnomeshParticipant
Hi. Sorry you see going through this nightmare and understand what you are going through pain wise and frustration wise.
before I had my inguinal mesh surgery I had immense groin pain with burning and heaviness over a 15 month time span I saw 3 hernia surgeons, had multiple physical check for a hernia and MRI’s and Cat scans that showed no hernias-However, 15 months later a surgeon finally said I had a hernia upon physical exam and get this when he went in to operate he found 2 hernias a direct and indirect. This explained why I felt to different sensations in my left groin with close proximity.
i will let the doctors weigh in on what are some steps you can take but I’m pretty sure before I’d get a triple neurectomy id first get nerve blocks one by one for the 3 nerves is the groin as the can be used diagnostic purposes as well as a predictor how well you would do with neurectomy (s).
Given your experience I can imagine it’s hard to figure out to trust.
you mentioned you flew to get your non mesh repair so I imagine that means you went to someone who specializes in non mesh repairs.
i noticed you did not choose to mention any of the surgeons names but I do think it may be helpful for other readers if you did-(but totally understand if you don’t want to)
it amazes me that in my case and in yours that our hernias went undiagnosed.
i has a vericocele surgery in the same side before I had the hernias and you had your first hernia repair and I wonder if scar damage from not he surgeries can interfere with and make it more difficult for hernias and recurrences to be seen.
hopefully some of the surgeons will weigh in on all these matters.
i do find it very disturbing that your non mesh repair failed and failed fast-that’s why personally I am interested who did the first repair and also who did the second repair and said you had no tissue there.
you would think a large recurrence would show up on a scan or be somewhat visible.
01/03/2020 at 11:59 pm #20624
Since it is technically pertinent to this discussion I will name the technique of the original surgery — Desarda.
The 2nd surgeon was Dr Grischkan in Cleveland. In my “backyard” and I didn’t realize it. Apparently he is successful via referrals, not AdWords. I told his staff I would be happy to help him with his website’s exposure, so maybe others would have more options available to them. I much rather would have done it close for obvious reasons, and since his technique sounds like a better approach with less tissue damage.
I would love it if the Dr’s could weigh in — I am considering flying out to CA to see Dr. Towfigh, I was encouraged when I read this comment from her on another post, and really it’s been one of the few encouraging things I’ve seen and I am hanging on to: “Most importantly: there is a cure. Don’t lose hope. Whatever the problem, it can be fixed. Continue to be your own biggest advocate.”
I just got back from my therapist, and he thinks the pentagabin is affecting my mood and thoughts, and I agree… but the alternative is the unbearable pain which seems to be mostly from the IN. My back, side, groin and thigh all get going and it’s too much.
01/04/2020 at 12:11 am #20625
[USER=”2042″]Jnomesh[/USER] not sure why my reply to you is unapproved. Maybe an admin can help?
01/04/2020 at 12:27 am #20626
01/04/2020 at 1:54 am #20627Good intentionsParticipantquote cshelter:
Hello [USER=”3118″]cshelter[/USER] I read your post and can not tell if you had a 2nd surgery that resulted in a hernia, or are waiting to have a 2nd surgery to fix a recurrent hernia, and, maybe, a new incisional hernia.
If you’ve “just” had a recurrence from a failed Desarda procedure that would be different than if you have a new hernia. Dr. Brown and Dr. Kang are well-versed in the methods of suture-based repairs. Maybe they can help. If you could give a clear summary of your condition now, that would help. Good luck.
01/04/2020 at 1:58 am #20628Good intentionsParticipant
01/04/2020 at 3:23 am #20631
[USER=”2029″]Good intentions[/USER] Hello, and thank you.
I had the Desarda Feb 4 2019, it failed fast, and an incisional then developed, as well.
So I had the 2nd surgery Oct 31, to fix what was a recurrence, and an incisional.
Per the operative report:
• Interpartietal hernia involving lateral abdominal wall
• Indirect recurrent inguinal hernia
I’m attaching the operative report too, for details.
Also worried I might not ever get my abdominal strength back, though Dr Grischkan believes I will, so I try to keep faith. This has just been a horrible, long journey into a rabbit hole I was determined to avoid… yet… here I am.
01/16/2020 at 7:44 am #21093
Which procedure did you opt for the repair? Did you get a mesh in the end?
Also I wanted to ask you, you stayed in the US for your first surgery?
01/17/2020 at 8:51 pm #21117
01/18/2020 at 3:13 am #21119
01/18/2020 at 8:41 am #21120
01/18/2020 at 9:22 am #21121
01/18/2020 at 7:11 pm #21124
@andrew1982 He isn’t entirely sure what is causing it, he says the repair of the recurrence is rock solid and I don’t doubt it, that seems good.
We have a plan to see a back and hip specialist and then check into the nerves. I am pretty sure it’s the IIN at least. It was always buzzing in the groin when I did the treadmill after the first surgery. I will probably end up trying ablation. And pray. I saw your posts… I hope you are hanging in there?
01/18/2020 at 8:47 pm #21125
@andrew1982 Something happened to us. I would like to know what it was, though probably never will.
Yet, unless I am missing something, I can say that there was already a mistake before surgery even started —— in the operative report / records, my initial surgeon had it noted from my exam that I had a reducible hernia. Yet, it was not reducible, ever.
The hernia sack was very high up, a few inches at least, above the hernia location, which was indirect. It never was reducible at all. Unless I’m missing the definition — but as I understand, that means you can push it back in, and it was for SURE not going back in, anywhere. It was so far away geographically firstly, and just not going to go in as the hernia was small, even if you could could have somehow shoved it over through the skin. That was never done, I would never have let anyone even try that.
I wonder if he saw in his records that it said “reducible”, that he might have cut an incision starting higher up than needed, thinking the hernia was under the sack, and reduceable. The more ground covered, I’m sure must be the greater the risk. He said something to the person with me that the incision was a long one. I always wondered why, since I had a small hernia.
My 2nd surgery incision was considerably shorter and there was more to do.
Actually, they made two errors before surgery. They didn’t realize I was there for surgery the day of surgery — and thought I was there for a consultation. The person I was with thought that was a bad omen, and I SO wish I had walked out then.
01/18/2020 at 10:10 pm #21127
I saw a youtube video of a sages conference where this surgeon showed how much the position of the various nerves around the groin changes from person to person…there are 3 important ones with lots of ramifications..doctors can chime in and explain what they do upfront to minimize the risk….I also read that many surgeons fail to correctly identify these nerves and I doubt they would have say they made a mistake and Cut a nerve..
01/18/2020 at 10:20 pm #21128
01/18/2020 at 10:39 pm #21129
I wonder if a simple stiching of the hernia is less risky and in fact always to be considered?…btw have you tried a diet change first? Also exercising just a little bit everyday might help…just stop short of pain…and do it slowly and soft.which is anyway the correct way no matter what
01/18/2020 at 11:30 pm #21130
@cshelter yes I am supposed to have a ct scan at the end of February. I don’t know if a US can locate precisely the nerves but probably doesn’t hurt…in any case I am willing to have a simple stich up repair but no remodelling or strengthening as that implies more manipulation of the area? From the forum discussions it sounds as if chronic pain was almost unknown in the old days….although Bassini Shouldice etc were practiced….
02/03/2020 at 6:13 am #21538
02/04/2020 at 8:25 pm #21658
@drtowfigh I’m sure you are far too fine of a person to come out and say it…after my experience I also have a hunch the surgeon, facility and aftercare is also a major factor…
I am seeing on FB and elsewhere so many people who are searching, many know they are uninformed — as unfortunately, I was uninformed too, but really didn’t know it after I thought I had a solution. I learn by experience in business and we rapidly iterate, and that unfortunately just doesn’t work well in this model, there are no trials — you have to really dig to get even basic info that is relatable to other parts of the journey and not just a clinical definition in isolation, and to be able to compare… it’s scattered, and people are busy with life.
What do you think of this?
An infographic of repair techniques, and as you say with pros and cons of same, the types of hernias and subsets (direct, indirect, more if there are), and which techniques match up generally to which, maybe with some other info to help when choosing the type of repair to consider. And what info to gather initially; questions to ask upon exam perhaps, in order to use the infographic properly, like what kind of hernia do you have, size, and subset so it makes sense and gives a good starting point on someones journey to get well. Along with corresponding Drs names and contact info if they choose to be on it — that do the techniques noted.
I think this — without exaggerating — would save many peoples lives, or quality of life. Which can be close to one and the same…
To make the right choice and be your own advocate, without being armed with the basic information or general roadmap, is hard if not impossible. So many are so desperate and scared… I have been trying to help with what I know, which is limited, but many questions are basic, and answers can be suggested, and if I can help… well I can do that at least. I have been pointing people to this fantastic resource as well to get answers that should be far better quality than what is generally available on FB too. Thanks for putting it together and keeping it going.
02/08/2020 at 9:28 am #21689drtowfighKeymaster
Sounds like a great plan. I’ll see what I can do.
02/10/2020 at 1:03 pm #21726
Do open repair cause incional hernias or laproscopic
02/10/2020 at 5:28 pm #21735
02/11/2020 at 4:33 am #21743
Are all open techniques prone to incisional hernias such as Shouldice or even just old time stitch ups. I am thinking of making an appointment with a 63 year old surgeon that has over 38 years experience he does do laproscopic but if is able to will do open
No mesh, he won’t do Desarda or Shouldice most of the surgeons around here just give 1 option mesh
Which I might end up doing mesh in the end if forced to, dr Yunis is closest to me 10 hours away, apprehensive about having a procedure that far away if a complication came up, I don’t have funds or time to be driving back and forth, already trying to sell my business because of this hernia, psychologically the hernia is taking a toll on me physically and mentally, the first surgeon I saw which uses mesh sort of gave me very
Little encouragement that I would ever be pain free again even after surgery
This hernia popped up dec30 I used to do 75 push-ups in morning run on treadmill for 75 minutes and lift light weights for 30 minutes, blood pressure used to be 130/80
Now 158/90; had don’t a thing since dec 30 but pet my dog and walk her
Keep thinking what to do I have entered the perfect storm having Crohn’s disease and a hernia is like lighting a match to a stick of dynamite, to see the top notch doctors
On hernia is an act of Congress do to where I live, I no longer plan the future I just live day to day, I new I could come down with a lot of diseases in my life I never thought a hernia would turn my life upside down
Thanx for listening guys
I might have said all this on the wrong thread if I did I am sorry
02/11/2020 at 11:07 am #21749
Do you follow a special diet? Did You stop exercising because of the pain?
02/11/2020 at 3:50 pm #21756
Yes and yes
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