[Casimir]

“I sadly contemplate suicide now as well”

Please, see someone asap to help with this. I understand some of what you are going though, was suicidal as well, mine are not empty words. You are needed and if you are saying this now you need and deserve help now.

I had a desarda in FL for a very small indirect hernia that should have been left alone also, that moves things into unnatural positions, failed quickly, was cavalierly and without basis guaranteed it hadn’t when it clearly had (now I know how incredibly clear it was that it had failed), then while floundering a very large incisional developed.

I saw Dr Grischkan after finally searching and searching and seeing various specialists. I am not going to speculate on if he can help you — but I had testicular issue as you describe as well, he explained why desardas are destructive procedures, why they can go wrong — and that he could help me. NO one else said they could help or even had a clue as to what was going on. Except him. Maybe you didn’t have a desarda on your left side, but it sounds like it.

Regardless if you did or not — I wanted you specifically to know he helped me when I thought no one could and had similar symptoms as what you have. Even the Cleveland Clinic wasn’t able to help me. PM me if you want any info please.

And please, call or speak to someone about what you mentioned you are contemplating.

[Casimir]

I am very sorry to hear this. I can relate — look up my post here “living a nightmare” — I had a desarda. It sounds like he did a desarda on your left side, is that correct?

It puts things where they flat out don’t belong. It’s in my opinion, after learning more about it too late, an insane procedure. From what you say, if he did that, I am shocked.

[Casimir]

@uhoh This seems to make total sense to me for what it’s worth too. Dr Conze in Germany, who I think is fair to say matters a lot what he thinks, also agrees. They will not do any surgery until the surgeon themself does an ultrasound. Not a passed-off reading done elsewhere even, but their own.

[Casimir]

@mitchtom6 I agree 100%. Walking on an incline now is better, and more tolerable. The pushing down required when walking up a lot of steps seems to be more aggravating and I DO avoid it like the plague 🙂 I never did stair training anyway, since my knees have arthritis in the kneecap — sort of a built in regulator.

@alephy Right? I’d like to hear form some that are 100% back to high intensity activity. I suppose I can be thankful this didn’t happen to me in my 20’s 30’s or 40’s… trying to see the silver lining, though, there is none if I’m being honest.

[Casimir]

@kaspa I should have said that by non-reduceable, there is no material at the hernia site that is extended outwards and reduces, none that does so under pressure, non-reducible because it’s not extruded to begin with at the site. If the material migrated a few inches one would have to assume it’s fat. If it were intestine and separated form itself… that would seem to be physically impossible or there would be serious emergency issues.

Anyway, each is different so maybe not useful to talk in generalities. But — seems like a lot of destruction of healthy tissue, for a small indirect hernia as I described. I doubt a doctor would opt for that treatment with a Desarda in that case. If they did anything, at all.

[Casimir]

@kaspa Yes, I might ask him. I know I think what he will say though based on what he says on his site.

From what I have learned, a small indirect hernia, that remained small say for 3 or 4 years already, say is fatty, and is non-reducable and therefore the risk is basically nil for strangulation, and is causing minimal pain, zero testicular pain, and has virtually no physical oppressors so you can do what you want without it inducing pain, is about as perfect the instance for at least *suggesting a “watch and wait” approach as an appropriate option to consider as there can be. I can’t image a more appropriate time actually.

I’d be surprised, if given that scenario, a doctor here would subject themselves to a desarda that frankly does considerable damage to tissue that is generally fine in this case, and with the added risk of never fully knowing what the result of surgery will be, as there are obviously risks to be considered.

[Casimir]

Edit 2: that also caused minimal pain and didn’t impede physical activity.

[Casimir]

Edit — I meant to type he says ““everyone SHOULD know this”.

[Casimir]

@drtowfigh @drbrown or any other doctor that is willing to weigh in about the post directly above ^ — can a doctor weigh in please? This thread sort of reached a point where there’s an interesting question hanging, and input from those who’s opinions would carry the most weight / respect I am guessing would be appreciated…

The question from above is (and started this thread as I saw on Dr Kangs site that he says “everyone would know this”, by that I assume he means every patient should know it’s not recommended): What would a doctor on this forum do for themselves in the case above, ie,, would you think it appropriate and see a likely case for yourself to have a desarda or shouldice done on yourself, if you understood you had a 1) non-reduceable 2) small 3) indirect inguinal hernia?

Seems to me that would not be a wise choice per Dr Kangs reasoning, but the more opinions the better and appreciated, thank you.

[Casimir]

@jnomesh
“But the patient is left out of the loop. The surgeon can still use in the wrong way.”
Follow the money.

“Seems a little concerning that from what you posted the concern seems to be around recurrence?”
Agree looks like there is a fixation on recurrence, and an avoidance of a discussion on chronic pain. Maybe partly because a recurrence can be physically identified, and requires a medical intervention — whereas chronic pain is invisible, and at can be passed off to pain management. Discussions of the latter would also lead to a reduction in surgeries surely. Hmm.

[Casimir]

This entire industry is like nothing I’ve ever seen. It’s like from another planet. It needs to be changed. Complaining WILL NOT get it done. I totally get the complaining but it WILL NOT get it done.

Legislation is needed.

That fact that people need to educate themselves in order to know if they are being told the reality of a life changing decision they are being asked to make is beyond shameful and beyond belief.

We know a percentage will witnesses destruction of
Their life
Their family’s life
Their everything else

And a percentage will suffer something less.

And percentage will be ok.

It is not acceptable to not have a handle on this. People need to go into this with full knowledge of risks, and the options other than just what the mesh folks want to talk about, and the provider of the service needs to provide that information.

There should be studies to determine complication rates – but for now call it 15% until it’s proven to be less. There needs to be a required standardized procedure for informed consent with massive teeth for those who don’t comply with the law. It can be as simple as here’s an approved standardized sheet with the facts, the dr goes over it with you, and you both sign that it was discussed. Massive. Teeth. For. Failure. To. Do. So. Would just take 5 minutes. With watchful waiting always described. The good surgeons will benefit as the others are weeded out.

This is just unreal. It has to change. I am really motivated to advocate for this.

[Casimir]

I think the desarda is indicated for reducible hernias, not indicated for non reducible indirect. I see studies on them and the subjects have reduceable.

Why would anyone allow or propose all the tissue damage and re-arrangement and associated risk for a small indirect non reducible hernia, say, when it’s got nothing to do with that type? Even moving ab muscles can affect reliant structures, like your spine…

Sounds like crazy talk to me. Like getting a CT as part of annual physical — or worse actually, because we know 100 for certain that will never be the same.

Can a doc weigh in? Would you undergo this for yourself under these circumstances?

[Casimir]

@jnomesh @kaspa

My understanding is that when it’s indirect, there is generally no issue with many delicate and important structures the desarda is disruptive to.

And therefore is sort of like asking for a remodeled bathroom, you leave, and come back to a demolished house and a new one not as good cobbled together in it’s place, and the contractor says well you said you wanted a remodeled bathroom — ya got one. Technically you satisfied the request, but with collateral damage that is not appropriate.

This is how I am reading it. I will do more research. For whatever reason, this stuff fascinates me now.

[Casimir]

@alephy I think if you include children but for adults I think it’s mostly weakened tissue / direct

[Casimir]

@good-intentions Thank you for the positive words 🙂 Much appreciated.

I really hope it can help. I am thinking of spending a small $10 a month or so to run targeted ads so it gets more exposure. It won’t make any profit or anything like that, not my goal. My business is B2B online retail, so this is sort of what I do and know I guess.

Herniatalk.com must be the gold standard of info. So thankful it’s here.

Dr Kang’s site is nice and informative! You know… it seems the better the repute of the surgeon, I notice, the more they are proponents of informing yourself.

What is says… well I figured i’d try to do something in my small way on FB, driven by lessons learned about what a shortcoming of knowledge can lead to — what largely caused the cascade of my story (w/o mentioning the people that did know better but didn’t show up) . That’s pretty much what it says. Thanks again.

[Casimir]

@good-intentions (I changed my username)

I know there are others in much worse shape than me, for various reasons, some it’s just bad luck. I feel so terrible for them. I see them in various groups.

Due to the lesson I learned from what should have been a relatively simple surgery and statistically likely a healthy recovery and back to enjoyable life, and instead went into a hellish domino effect / rabbit hole which (the lesson learned!) could have been avoided if I myself knew a little more and I myself could have had the confidence to recognize the problems like bad exam, bad choice of treatment, at the Desarda Clinic — in response to that, I made a page that hopefully will allow some others to avoid this same hellish experience. Doing it has in itself made me feel better actually.

It’s here: https://www.facebook.com/herniaHQ/

I’ll keep adding to it. I know it will help someone.

If anyone has suggestions I’m totally open.

[Casimir]

@good-intentions I had the Desarda. Then a recur of the initial indirect quickly followed. Incisional followed.

Second surgery followed — mesh used to reinforce the abdominal wall (I’m not exactly sure how), and there was a thin strip of mesh in the groin area which is more flexible I believe (goretex) than polypropylene. The tissue frayed, there was not enough left to restructure with, and I believe it acts as sort of a bridge to reconnect what is there, and more grows in. He said the tissue looked like a ballon looks after it pops.

I put the op report in a post, not sure if it’s there still, it explains it.

I do gentle slow stretching. And slowly am introducing strength exercises.

[Casimir]

@good-intentions Just an update. First, I think the Desarda doesn’t like incline walking early on because it wraps around a ligament that gets stressed more walking on an incline. I could be wrong though. That did happen once before too — I thought I was wrong about something, but, actually I was right 😉 Some levity..ok seriously though…..

Update — I can walk on an incline on the treadmill much better now, today 14 minutes at a 9 degree incline… thank God, because I was not getting any cardio and my BP was going nuts and it was just another aspect making me feel awful.

It’s back to normal now. Getting cautiously optimistic…

[Casimir]

@ssonic99 Interesting. And I’ll just add this because this is related to your post…(read my post about living a nightmare, incisional hernia and that Desarda clinic).

Ignored… I needed to ask for my records, to get help in Ohio, and was told ever changing protocol to get them by different staff, put on hold forever, just utterly unprofessional and sketchy all around was the impression I got… finally I was forced to say, look people, please send them or I’ll have to cc the Fl Medical Board next time I ask. *Shock*, I got them the next morning. I hated having to do that. Just send them per HIPPA, even if you don’t want to help me.

There was a big error in them I then noticed. They noted pre-op exam diagnosed the hernia type as reducible, indicating usually direct. It was not reducible at all, and was indirect. How they got reducible is totally beyond me…… except I wonder if the reason for the error was because Dr Tomas never bothered to palpate the hernia site in my initial exam and just eyeballed and saw a hernia sac higher up. I wish I was a fan. I hoped I would be. I know stuff can go wrong — but this is not Act of God stuff or fluky one-off stuff.

I asked many times about a raised fatty mound I noticed, that to me, a simple LAYMAN, was a clue I possibly had a recurrence, as I had lingering pain as well. I asked repeatedly to please have someone get back if that was normal and please what the Dr thought — might it mean a problem? Crickets, all the time crickets. And yes it was there because yes I did have a recurrence.

Re sutures, I was told they are absorbable sutures because I asked about that before going on a trip outside the country. Have all in emails.. was told that they were all dissolved after 8 weeks…Then I got back and Esteban said, welp nope, they are still there! And only start to dissolve after 14 weeks or longer.

[Casimir]

@ajm222 Thanks, I am better than I was before Dr Grischkan. Sometimes I even briefly feel “normal” but not often. And sometimes it’s very frustrating. Usually somewhere in the middle. I try not to think about it.

IMHO… What there should be is a federal standardized consent form that describes the risks (they are known), says the surgeon explained x and y risks to me, explained alternative treatments to me, and the risks of not opting for surgery at all to me, and both the doc and patient sign and date it and the patient keeps a copy.

I’d like to push for legislation requiring that. People often do get more info when they take their car in for a repair. I think there are far too many people that don’t understand the risks and pay dearly — they just do not know what they do not know. Then the doc might be burnt out, maybe had a “bad day”, are poor communicators, misunderstood the patients level of comfort, just didn’t care to explain, maybe wants as much business as possible, or whatever — they are human too and like anything there are lots of good and some not so good — and the patient pays. And that shouldn’t stand when there’s something that could make such a difference and takes 5 to 10 minutes, and can go home with you.