Newly diagnosed … And loads of questions. I’m terrified

[drkang]

Dear Pinto,

Listening to the stories that have happened, I think I would have been very upset too if I had been in your position. I apologize once again for your being mistreated.
As you said, I feel direct responsibility for all this inconvenience you had.

But it was me who requested your photo. Because proper guidance can be provided only when the status is identified. As I remember, it was difficult to clearly determine whether there was a recurrence from the photos you sent, so I told Stephen to ask you to do an ultrasound there. If not the COVID-19 situation, I would have asked you to visit our hospital again and fix your problem.

In fact, in the context of covid 19, we moved the hospital in July 2020 to a new place and there have been several complicated things since. So I guess Stephen didn’t report enough to me. I know that’s not a good excuse for your being mistreated. But I want to comfort you as much as possible. From now on, we will do our best to solve your inconvenience.
I apologize again.

With best regards,

Yoonsik Kang

[pinto]

@drkang, you unfortunately have been misinformed by your assistant, Stephen. Did he tell you he banned me from emailing him? He apparently was upset that after months of my being mistreated by him that I should dare challenge the efficacy of your surgery. His action not only violated the role of “hospital chaplain,” but surely your own hospital best-practice policies, right? He is the only channel of communication with you and your hospital and you want him to tell a patient with a complication of your surgery not to contact him??

Did he tell you that at his request, repeat: at his request, I send him a photo of my groin showing a bulge? And I surely did, surely did. Did he also inform you that the ultrasound test was non-standard (not valvasa ultrasound). Anyone reading HerniaTalk will learn that valvasa is usually necessary if an ultrasound. I never asked for your diagnosis. I repeat: I never asked for you diagnosis. Rather I sought your guidance on general grounds about my bulge.

Did Stephen tell you that after I reported I had groin protrusion at the operation site that you did not reply until a month later? A month later! Did he tell you that due to his/your hospital putting me off that my seeking of your guidance went on for six months to no avail?!

Did he tell you that he told me multiple times you were too busy to answer my question? And sometimes I had to wait a whole week just to be told that?? And precisely at least one of those times you were posting at HerniaTalk, suggesting that YOUR patient with a complication from YOUR surgery is less important than commercializing your service?

I think that that sufficiently shows that I was severely mistreated by Stephen, your administrative assistant. As president of your hospital you have direct responsibility and let me at this time not go into some serious implications arising from these facts.

[William Bryant]

Pinto, hopefully there will be some resolution as Dr Kang is following this up now which is good, but a shame it took a time as it must have affected you badly in the interim. Hope all goes well and if you can, could let us know the outcome.

Hoping it all works out for you

[drkang]

Dear Pinto,

First of all, I deeply apologize for all the inconvenience you experienced. And I am very sorry to hear that you have experienced worrying symptoms after surgery. Actually, I have many difficulties in English. If I communicated directly with you, it would have caused less inconvenience to you.

I have heard from Stephen that he has received your emails asking questions about your symptoms after surgery. Regretfully I didn’t know exactly what happened to you in the past. The last thing I heard from Stephen several months ago was that you had an ultrasound in Japan and it was diagnosed as not a hernia recurrence.
So, since the ultrasound results may not be accurate, I told Stephen to ask you to come to our hospital and have a thorough examination, and if recurrence is confirmed, I would re-operate for free. I’m also frustrated that I can’t confirm what kind of problem you’re having trouble with.

In the meantime, we haven’t been able to strongly recommend you to come to Korea because of COVID-19. But now things are a lot better. If you have completed your vaccination, then you go to the Korean embassy in Japan and get a self-quarantine exemption letter. If you get it, you can go out immediately after receiving a PCR test within 24 hours of arriving in Korea and confirming negative.

I’ll check with Stephen in detail about the inconvenience you’ve been experiencing. And I will take time to answer the other questions.

I deeply apologize again for any inconvenience caused.

With best regards,
Yoonsik Kang

[Pinto2]

And these as well,
06/07/2021
https://herniatalk.com/forums/topic/a-question-never-asked-the-surgeon-but-should-be/
06/11/2021
https://herniatalk.com/forums/topic/banned-by-my-surgeon/
06/25/2021
https://herniatalk.com/forums/topic/a-confession/

A Question Never Asked the Surgeon but Should Be

[Pinto2]

Please note this post about your treatment:
05/04/2021
https://herniatalk.com/forums/topic/mysterious-post-surgery-swelling/

Mysterious Post-Surgery Swelling

[Pinto2]

Dr. Kang, however innovative if a surgeon ignores their responsibility to their patients, then all would be for naught, wouldn’t it? Please answer my question.

[Pinto2]

I am your patient but have been blocked from communicating with you. Would you please answer my question? I could not have it answered despite 50 emails over a six-month period. Stephen has treated me terribly.

[Pinto2]

system test

[drkang]

Hi,

It takes many years to develop and complete new surgical methods. Because a surgeon should check feedback from patients regularly, and even if we complete the surgical technique, it will take several more years for the official result to come out.
It has been nine years since the development of Kang Repair began, and now I think it is almost complete. From now on, we are going to prepare for a clinical trial. However, it will be at least three to four years before the final results are published.
I think it is ideal for introducing the surgical method while presenting the final result. However, Kang repair was introduced too early for a couple of reasons.

First, someone asked Herniatalk about Kang Repair a few years ago. I found out about this by chance and gave a brief explanation to answer his curiosity, which led me to post several times later. The second reason is the sense of urgency to blow in the wind before the fire of the non-mesh hernia repair is wholly extinguished. In other words, I wanted to convince the patients that good or even better results can be obtained with a non-mesh repair so that they do not lose hope.

I have developed Kang Repair through dozens of improvements so far. To do that, I continuously had to monitor the surgical results. So the results are different from time to time.

The results of specific surgical methods indeed gain credibility when published in papers. However, the results published in the article do not mean the results themselves have been verified. It only means that the thesis adheres to the research principles well. Therefore, I do not believe that published results in papers are reliable and unpublished results are unreliable.

It is my main concern to complete a hernia surgery method that can minimize recurrence and sequelae. I have no intention of beautifying Kang Repair beyond reality. My personal goal is to keep the long-term recurrence rate below 0.5%, hopefully 0%, and minimize sequelae incidence. I’m pretty sure it’s possible.

Thank you!

[William Bryant]

Hello Jack, another useful answer, thanks very much. My ultrasound is due mid November so I’ll share the result when I get it, most likely end of November. I asked my gp if he was going to arrange ultrasound and he said yes once I asked him.

You’re absolutely right, all the names and information whirl round in my head and I end up confusing the information.

So yes I think I must start writing it all down.

I take your point about reviews on the internet. In a similar vein I do sometimes wonder if the UK consultants who say they do non mesh, try to talk you into mesh when you see them. I may be being too sceptical but I have yet to see or find a review or post on here from anyone in the UK who has had a natural tissue, non mesh in the UK by a UK surgeon.

Have you come across any comments from anyone who has?

[Jack2021]

I agree with your points about UK non-mesh expertise and there actually seems to be very limited specialist non-mesh hernia repair expertise worldwide, sadly.

Re Peter Jones, I tried to contact him, but was unable to, which led me to Simon Bailly, who I believe trained under him, but I’m not 100% on that. I’ve spoken with his secretary, but she knew nothing at all about his non-mesh repairs, other than he does offer them.

I think I was diagnosed around 6 months ago and knew about it a week or so before.

I’m not medically trained, but I think it’s pretty common for the right testicle to hang lower than the left and vice-versa. If it’s not causing any problems or discomfort and they both lift when you tense them, then I probably wouldn’t be overly concerned.

I agree it can be depressing to contemplate the risks of surgery, long term chronic pain and possible recurrence.

Re your possible allergies, you could look into getting hold of some Prolene and taping it to the inside of your forearm for a patch test perhaps. Maybe I should do that too actually! I have a possible nickel or zinc allergy, but I’m not sure which, but that would put me of metal sutures. Again, patch tests could help with that, but obviously it’d still be different when used internally during surgery.

Interesting to hear that your doctor has organised an ultrasound. Is that your GP? My GP’s only prescribe watchful waiting, unless they deem it urgent, by which time there’s a 6-12 month waiting list! Consultants in the UK that I’ve spoken with don’t appear to value doing one, certainly not at consultation stage anyway, but it seems to form a fundamental part of the process in Germany and with Dr Kang. In Germany, the doctors seem to do the ultrasound themselves.

Id be interested to know what the outcome of your ultrasound is if you’d be happy to share?

When you’re frantically researching all this soon after diagnosis, as I did, it’s easy to muddle things up and become overwhelmed with it all. It may not work for you, or you may already be doing it, but I’d recommend making notes re all the key things you want to remember and questions you’d like to ask a consultant when you contact them.

You’re probably already doing this, but I’d also suggest listing each consultant you’re looking into and detailing everything you find out about their approach, so you have a good reference point for all your research, which may influence your decisions. I can’t say I’ve done it perfectly and I’ve updated my questions and notes as I’ve gone along and learned more. I’ve also detailed all the answers I’ve had from speaking with various consultants across the UK and Germany.

It would be easier if we were able to speak to each other, but I don’t think you can send private messages or exchange contact details through this forum.

Failing that, it may not work for you, but I’d recommend blitzing your research, speak to/email some/all of the consultants you’re considering, make your notes and then step away from all this for a bit to come up for air and take a break from it all. Then reflect on everything and see how you feel and what you think then. It may not change anything, but you’ll be more informed and hopefully have a better idea of what you may wish to do and if it’s to go ahead with the operation sooner rather than later, who with. My thinking about consultants has changed throughout my research.

For most of my research re the non-mesh approaches and the non-mesh vs mesh techniques, I used the renowned Cochrane Library website, so I’ve done research on mesh approaches too. I definitely want a non-mesh repair.

Following my research, the options for me are:
1. Watchful waiting, for which there are a growing number of strong arguments. Until this was properly explained to me by a consultant, I thought the sooner I got the operation done the better and thought of it purely as a cost saving initiative in the NHS, but now I realise that’s not the case.

2. Get the operation done asap using a non-mesh technique, so Shouldice, Desarda or Kang appear to be the best options.

Shouldice has the most evidence to support the technique’s success, though consultants seem to have their own variations – which is best? Some of my reading indicates it’s the most invasive/substantial of the non-mesh surgeries. I don’t have a record of where I read this, but it’s in my notes and I think that Dr Kang’s notes on his hospital website states this also.

Desarda has less evidence, but what there is appears to put it on a level with Shouldice, perhaps even edging it somewhat overall.

The Kang repair doesn’t appear to have any published research papers yet to back up all the claims, which do sound excellent. Playing ‘devil’s advocate’ and not meaning to denigrate anything anyone’s said in this forum, in this day and age, can all positive claims and reviews we read online be trusted 100%, particularly when we’re very vulnerable as we search for the perfect fix for our hernia?

Although the Kang repair sounds potentially the best and most minimally invasive repair, with the most attention to detail re its variation in treatment dependent on direct or indirect hernias, some of the recurrence stats quoted appear to vary slightly on different websites (along the lines of 0.16% – 0.88% for recurrence rates, which there could be a justifiable reason for) though they’re still all under 1%, which is extremely low. Kang repairs may be the way forward, though I’d really like to see published research ASAP to evidence it, or not, before I’d consider booking a long haul return for the operation.

Watchful waiting has its appeal!

[William Bryant]

Also Jack,

With regard to ultrasound, I asked my doctor (NHS) if he was going to arrange one and he said yes. The appointment has come through but I’ve not had it yet. Not sure ct or MRI wouldn’t be more revealing.

[William Bryant]

That’s a brilliant and most useful reply Jack. Really appreciate it.

I think it was Simon Bailey where I read that he cuts nerve or nerves. But I’ve read so much I may be mistaken.

I agree about procedures overseas and follow up…. But, the UK seems to have less non mesh expertise and specialists. It’s a real shame Peter Jones retired.

How long have you been watching and waiting?

My bump or lump is about egg shaped but not as round, maybe slightly smaller than egg. Maybe ping pong or golf ball but not as rounded. It’s above and slightly to the right of my right testicle. And my right testicle hangs lower than left. I don’t know if it always did.

The after surgery risks have preyed on my mind so much. It’s so depressing.

Many thanks for your reply. Most helpful and sums up UK situation.

Regarding plastic or metal stuff in body… I know zips, belt buckles and backs of some metal watches irritate my skin if they contact them.

[Jack2021]

Hi William,

I’m in the UK with a right sided hernia also. I’ve been told mine is inguinal but from my experience, they don’t appear to do ultrasounds as standard here (I was told it wasn’t necessary) so little attention is paid to whether a hernia is direct or indirect. I’d be interested to hear if your experience is different?

Femoral hernias seem to be rarer for men and more common for women, so inguinal hernias are much more common for men. It’s hard to describe and I’m not medically trained, but from my reading, if it appears to be a round lump, that more likely indicates a direct hernia and if the swelling is more diagonal following the line of your groin crease where it meets your thigh, that more likely indicates an indirect hernia. I don’t think this is necessarily guaranteed to be correct, but gives a general indication. There are doctors on here that could no doubt answer this more specifically.

There don’t seem to be many hernia only specialists in the uk and none solely practising non-mesh repairs that I can find. If you come across any more from the ones I mention below or in my other posts, please let me know.

Although I already had a healthy BMI, I managed to lose 7kg quite quickly since diagnosis and it’s definitely had a positive impact regarding pain and urination. I think it’s due to reduced pressure in the stomach area. I didn’t have chronic pain, more occasional dull aches really, but I don’t tend to get that now really. To lose weight, I maintained a healthy diet with plenty of fruit and veg and literally just cut portion sizes down, particularly in the evening and I try to eat my meals within an 8 (ideally) to 10 hour window now. It may not be helpful for everyone but has worked for me and I feel better generally for it.

Waiting is an option. Apparently the risk of hernia incarceration is extremely low to start with if you have a relatively small hernia, though the risk will increase over the years. From my research, some consultants say that if your hernia isn’t significantly impacting physically on your life, then you should consider waiting until it does, rather than having surgery immediately. This is because of the possible, albeit apparently rare risks of surgery complications and also the possibility of long term pain afterwards. Other consultants say that if you have a visible bulge, then it should be operated on, as it will get worse over time and could make the inevitable operation more complicated.

It’s a minefield with many subjective opinions and studies which offer evidence to support both mesh and non-mesh repairs and there are many people who’ve unfortunately had terrible experiences and long term negative outcomes. What most consultants appear to agree on, perhaps not all, is that nobody knows for sure about the possible risks of mesh implantation in the long term.

Meshes are made from different materials, some of which degrade (polyester) and they can move, crease and fold causing complications, more so as they become populated by natural tissue that grows through them over time, making removal complicated. They can be removed but not all surgeons offer the procedure, including those who implant them! Most consultants seem to say that issues with mesh are generally down to the surgeon who implanted them, such as the wrong size mesh was used or it was situated incorrectly and many (perhaps most or all in the UK) surgeons are no longer even taught how to do a non-mesh hernia repair. Mesh is big business for the companies that supply it too.

There are a small number of people who will have a poor reaction to the mesh itself, regardless of how well it is implanted.

You can have a mesh repair if you have a recurrence after non-mesh repair, but it is less likely that you could have a tissue repair following a mesh repair failing.

Unfortunately, despite being classed as major surgery, in the UK at least, hernia’s are seen as an unspecialised operation that all general surgeons can undertake and inexperienced junior surgeons are commonly given them to do for practice.

After reading many studies and meta-studies, my preference is definitely to have a non-mesh repair, either a modified Shouldice repair or a Desarda repair. I’m unsure if one has a benefit over the other. Both leave permanent sutures internally (commonly Prolene which fishing line effectively, but always ask the consultant what they use), but that’s unavoidable and dissolvable sutures appear to dramatically increase the risk of recurrence. There are arguments for both techniques and the Shouldice/modified Shouldice methods are the oldest and most commonly practiced of the two. From my research, both seem to offer similar and sometimes better recurrence rates to mesh repairs, without the added risks from mesh. The key to success with both and no doubt all surgeries, is likely an excellent and well practiced surgeon.

Mesh removal as a specialism appears to be a growing sector, which for me is an added indication that mesh is something I’d rather avoid if possible.

Who was it in the UK that you enquired about non-mesh surgery with that mentioned cutting the nerves?

Ulrike Muschawek who is well known across Europe travels from Germany to London to operate quite regularly I believe (pandemic allowing) through Biohernia and other places which will come up on a google search. She specialises in a modified Shouldice repair and apparently cuts some of the nerves, which is standard from the original Shouldice procedure but argued by some as being unnecessary and detrimental. She’s best known for sports hernia repairs (unrelated to inguinal hernias and is a more minor surgery I believe) and has operated on a few top Premier League footballers in the past. There are some negative reviews around though (but perhaps it’s the same with all surgeons) regarding hernia repairs, including on this forum, related to long term post-op chronic pain. At around £6,500 for a one-side repair, she’s not cheap. I heard that she’s about 70 now, though I couldn’t confirm that. If you have private medical insurance, there aren’t many that she’s registered with and you can’t see her through the NHS.

There are other renowned hernia specialists in Germany, such as Joachim Conze (formerly a business partner of Muschaweck, but they’re not connected anymore) who heads up the Hernia Centre in Munich, Ralph Lorenz of the Hernia Centre in Berlin and Andreas Koch who’s based in Cottbus. There’s a Dr Wiese in Berlin too and there may well be more. Costs are in the region of £2500 – £6,000 for them including accommodation for 2-4 nights.

I don’t think these surgeons cut the nerves or cremaster muscle (Conze doesn’t), but you’d need to check if you contact them. I’d like a surgeon who doesn’t cut them as I’ve not found enough evidence to suggest it’s beneficial and it can seemingly be a cause of long term chronic pain.

I’m also unaware if these surgeons offer the two modified Shouldice/Bassini approaches dependent on direct vs indirect hernias, as Dr Kang does, but I think they all do ultrasounds and tailor their approach subject to what they find during the operation.

Dr Kang’s work looks very interesting too. My concern with having surgery outside the UK is follow ups, both general and also if I were to experience any ongoing issues that might need investigation by the surgeon.

There are some surgeons performing non-mesh surgeries in the UK and if you check some of my earlier posts, you’ll see more of them listed, but they don’t appear to offer non-mesh repairs as a rule. Simon Bailly offers a modified Shouldice, though I think I read somewhere that he uses absorbable sutures, but that may be incorrect. He also offers mesh repairs too and a number of other surgeries. Duncan Light (Education Secretary of the UK Hernia Society) offers the Desarda repair if non-mesh surgery is requested, as well as laparoscopic mesh repairs. He’s NHS only, so you can ask your GP for a referral at no cost.

That’s everything I’ve found so far and I hope it’s helpful for you. Please let me know if you find anything else.

All the best

[William Bryant]

What country are you in Wim? Has it got worse? Do you take things easy and what surgery would you have?

[Wim]

Nope. Just watching now 1 year already, mostly also because of COVID (these procdure were all stopped for a long time here)

[William Bryant]

Thanks Wim,
Have you had any other tests following ultrasound?

[Wim]

Don’t expect much of the ultrasound. I did also one and still I don’t know what kind of hernia I have. You get as answer that it doesn’t change much, althouh direct hernia is 10 times less change to get strangulated than indirect hernia for instance.

[William Bryant]

Also I have noticed my testicle on right side is lower than left. 2 doctors have examined them and said: normal???