Tag Archives: surgery

Pyloric Stenosis’ Game-changer

The German Dr Conrad Ramstedt’s surgical remedy for infant pyloric stenosis was announced to the world at a medical conference and publication in 1912.

This event hardly affected the great majority of the human race, but it was of course rather significant for someone who underwent that surgery 33 years later to save his life just 10 days after his mother gave him birth.  And because pyloric stenosis (“PS”) affects between 3 and 5 babies in every thousand born in developed countries, and most of these are treated surgically, there are many people alive today because of Ramstedt’s discovery.

However, one only has to research the history of this condition and its treatment to realise that whilst the German doctor realised he had made a significant discovery, he was also the unwitting cause of trauma in at least some and perhaps many PS babies and their parents.  Let me explain…

In 1912, the medical treatment of PS babies was the rule but very risky, and almost half the infants died despite it.  Several surgical techniques were then being offered as an alternative for PS babies, but these were so drastic and severe on a tiny, malnourished and dehydrated baby that the great majority died of surgical shock, infection, and other related causes.  Most parents took their chances with the available medicines… and prayed.

RamstedtConrad operating

Dr Conrad Ramstedt operating

Dr Conrad Ramstedt’s accidental discovery in 1911 was published in October 1912 and represented a major breakthrough: see this post and this one.  The Ramstedt pyloromyotomy was rapidly adopted as the remedy of choice in most developed countries around the world, and in four decades after 1912, deaths from PS fell to almost nil in most countries.  However, even in the 1940s, some countries (including Great Britain) continued to report their PS mortality was still at 25%.  I have been shocked by how many mentions there are on the web of relatives dying of PS, even in the 1950s.  Despite all this, Ramstedt’s technique and better health standards in hospitals have done much to make death from PS most uncommon today.

How did the Ramstedt pyloromyotomy contribute to this?

Pic 13It made treating PS relatively easy and simple for surgeons, hospital staff, and parents. For surgeons the technique requires practice and care, but is essentially one of the simplest surgical procedures on the surgeries list.  The surgery usually ends the violent and deadly vomiting; although some continued vomiting and reflux occur quite often, it is fairly rare that an incomplete myotomy (division of the pyloric muscle) or the muscle’s redevelopment requires a repeat of the surgery.  So: anxious parents are greatly relieved, the surgeon immediately becomes a warrior-hero, and the baby quickly starts to make up for weight lost: I gather that my post-op photo is quite typical!

Apart from the great relief of all concerned, the Ramstedt pyloromyotomy saves pediatric ward staff and the bay’s parents from having to manage (or endure) weeks (and often two months) of medical treatment, with each of the sick baby’s feeds requiring medication be administered beforehand to a rigid schedule, milk having to be given slowly and carefully, daily weighing, and regular consultations with the hospital clinic or paediatrician.  Why put yourself through all that when surrendering your baby for just an hour or so to the gowned and skilled surgical staff produces what often seems like an instant fix?

Some babies are best treated surgically, and of the babies treated medically, up to 20% will not respond sufficiently well to avoid belated surgery.

Superman MD1On the other hand, almost all Ramstedt pyloromyotomies seem to be fully effective, certainly in the immediate sense.  And although the worldwide web includes many thousands of complaints and stories of a long list of troublesome ongoing effects from their PS or its surgery, it is just as clear that the vast majority of survivors and their parents are satisfied enough not to air their troubles.  The possible effects of the surgery are many and real, and sometimes severe, but many PS survivors report little or no gastric or abdominal discomfort, few or no problems with their scar or adhesions, and no trauma.  And this silence of the vast majority of PS patients has enabled most of the medical world to assure anxious and worried parents that “PS and its surgery will have no after-effects on your dear child”.

What I have written so far gives me some cause for concern, however.

Ramstedt’s discovery at once saved my life (and I’ve had more than 70 very good years so far), and it has also been responsible for the trauma I and not a few others have had to deal with (often chiefly in private) for most of our lives.

It was quite unintentional, but it is nevertheless true that Ramstedt’s surgical solution for PS effectively and inexorably moved the medical community’s interest away from perfecting the already (and still today) quite effective treatment of PS with cheap and simple medication and careful maternal nursing.  The Ramstedt pyloromyotomy is (as stated above) in itself what many surgeons call “elegant”: it is easy, quick and usually effective.  But until quite recently the surgery and what came with it could be very severe and traumatic on the baby and also on the parents, and it was associated with more (and more severe) risk factors than the medical alternative.

Thus the Ramstedt pyloromyotomy helped fuel the ascendancy of the power and prestige of the surgeon with which some of us are all too familiar today!  We must remember that specialist and high technology medical science has been very largely responsible for our rising health standards and life expectancies, but in fact PS is one of the maladies that can in most cases be brought under control by medical means and with surgery kept as a last resort.  In some developed countries, PS continues to be managed in this manner, and in many developing countries, medical treatment is far more affordable and widely available, and thus the first option.

So Ramstedt’s operation short-circuited interest in understanding and managing the causes, pathogenesis (biochemical development such as proposed by Dr Ian M Rogers) and even prevention of PS.

Whilst I am deeply grateful for the operation that saved my life and realise that in my case surgery may well have been the only responsible remedy, I have often wished that I could have been treated more gently, without a disfiguring scar, and without inflicting life-long trauma on my parents and me.

And in this wish I am not alone.

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Pyloric stenosis in its adult forms (2)

My life’s work as a church pastor has made me aware of many of the common medical conditions, as I have supported people with all kinds of cancers, many heart, lung and “lower abdominal” conditions… ah, I don’t want to bore you with the long list!

Troublesome and also serious medical conditions often occur without warning and they can totally surprise the sufferer.  When I needed two kinds of eye surgery some years ago, I already knew a lot about the cause, the procedure, and the likely outcome.  My father had already charted my path, as had several people I pastored. 112

But most non-medical people have not had not worked with as many sick people as I have, and many health problems don’t have a clear family / genetic factor.  For these folk especially it can be very frustrating to be dealing with something life-affecting they know nothing about; quite likely they’d never heard of their condition before.

Adult pyloric stenosis (“PS”) is often like that: it is far rarer than the infant form (which itself is not exactly everyday), and it’s not always obviously linked with the family’s genes or the patient’s lifestyle.

A 1998 medical report deals with such a case.  For the details, please use the link to find and read the full article.  All three medical journal reports mentioned in this post are commendably available free and in full on the web! Points of general interest in this first article include –

  • It concerns a (then) 47 year old Caucasian woman, a rare thing as PS in both its infant and adult forms affects about 4 times as many males as females.
  • It seems this PS case was regarded as “primary” – without an obvious cause.  Several symptoms started only some 2 – 3 months before her surgery, and although she had suffered from dyspepsia and occasional vomitting she had none of the common precursors to adult PS: infant PS, adhesions, a gastric ulcer or cancer (which would have made this a “secondary PS”).
  • Examinations and imaging before her surgery showed little abnormality apart from reduced stomach emptying, but post-op pathology showed abnormal cell and muscle structure in the pyloric region.
  • The distal gastrectomy surgery involved removing the lower part of the stomach and the pylorus and attaching the stomach to the duodenum.
  • The report tells us there were no continuing symptoms, although it is not hard to find less concise and straightforward comments from other patients elsewhere!  This patient had severe surgery that should be expected to change digestive functioning.

Several other matters are also worth mentioning –

  • It is mentioned at several points that the cause of primary adult PS is little understood, and it is claimed that there are no statistics on how frequently it occurs.
  • Several surgical techniques are used to manage adult PS, all of which are more radical and affect digestion far more than Ramstedt’s operation which is the usual procedure used to remedy infant PS.

In light of this, I was somewhat intrigued to discover that a 1965 article (also freely available in full) contradicted several of the most significant assertions made by the previous report!  Specifically, Dr Milo W Keynes claimed that –

  • “Primary”, “uncomplicated” or “simple” PS in adults seems to have a genetic base.
  • It is far more common than is often claimed – but adult PS patients and those with a “simple” PS are less likely to seek treatment than the parents of a very sick baby.
  • “Secondary” PS occurs more often than the “primary” form, although reports of the incidence vary greatly from 10:1 to 3:1.
  • Many of the patients had struggled with symptoms for many years (e.g., 12 years), and sometimes from childhood.
  • There is a long list of symptoms, and these vary greatly.
  • Most patients were older, but the documented cases ranged from age 14 to 85.
  • Adult PS occurs in about 2 males to every female – different from the infant form.
  • It is claimed that “simple” PS can usually be traced to the patient’s infancy.
  • It is also claimed that it can be managed without major surgery: by the same muscle-splitting Ramstedt operation as done with babies.
  • However, at the end of the article it is stated that the preferred management of adult PS is by one of the much more severe surgical techniques, so that underlying disease such as a cancer or an ulcer can be dealt with if necessary and because the Ramstedt procedure does not always relieve the obstruction.  This leaves the patient and surgeon with a choice between gastro-duodenostomy, gastroenterostomy, gastro-jejunostomy, partial gastrectomy and pyloroplasty.

Another article in the same medical journal issue as the previous one reported on a study of 100 adult PS patients, all of whom had their diagnosis confirmed at surgery.  All but 3 of these were found to have a cancer or peptic ulcer(s): of these 3, one had Hodgkin’s disease, leaving the other two with a “simple” adult hypertrophic (enlarged) PS. Details in this report which are likely to be of interest to the reader of this blog include –

  • Although the symptoms of adult PS vary greatly, the core symptoms are common and quite unmistakable: vomiting containing food eaten a day or two earlier, loss of appetite, weight loss, and gastric splash (an audible sloshing sound in the stomach when rocked more than 3 hours after a meal).
  • A duodenal ulcer can cause obstruction without vomiting.

These two reviews of informative articles conclude a series of three on adult PS.

Interested readers might use the “Categories” box (top right of the “page”) to find other posts on this subject. DiscussionForum

Facebook members might join one or more of the largest PS Groups on this social web forum, as some 12 adult PS sufferers have shared something of their varied and common experience of this condition.  Several of these Groups are “closed”: all can be found via the Facebook Search box, but to encourage candid sharing only those who join can see their contents.

Pyloric stenosis in its adult forms (1)

Back in the 1950s I once overheard my parents talking about my oldest (and long deceased) uncle Fred having a stomach ulcer and an operation to deal with this.  I well remember being transfixed and “all ears”, but having been stonewalled so often, I dared not ask my parents the question on my mind.  At this time I would have been about 10 years old, and I had worked out that my prominent and hated belly scar was from an operation I’d had as a baby as I’d developed a blocked stomach (pyloric stenosis, “PS”).  I was keen to know whether my uncle Fred would be sporting a scar just like his young namesake.

When I got to see my uncle in swim-mode some 20 years later I was disappointed: his scar was small and almost invisible, far less disfiguring than mine.  Compared with infant surgery in the 1940s, abdominal surgery on adults and 20 years later was quite tidy.

Gastric ulcer01What I’ve discovered only recently is that infant PS and adult gastric ulcers and PS are often related.  All three conditions and several others have been linked with a high output of gastric acid and this is often a family trait.  So my connection with my namesake uncle (and hero) likely went further than our family realised!

The previous post sets out some of the important similarities and differences between the infant and adult forms of PS.  This post will outline two medical articles on adult PS.

The first report was published in 2010 and deals with the case of a 71 year old male who was diagnosed with PS.  The interested reader is encouraged to use the link to read the full article which has been kindly made available to the public.

In brief, it notes that adult PS is found in two forms.  It is often caused by other conditions: a long history of a mild form of the early version, an earlier stomach problem such as a gastric ulcer, or cancer.  Sometimes, as in this case, no underlying disease was found.  This 71 year old was unaware of any such factors, yet tests and surgery proved this man did indeed have a PS.  His symptoms of “abdominal distension, nausea, and vomiting” had been noticed for (just) 3 months.

It is noted that both forms of PS occur far more often in males than in females, and that they often recur in certain families.

The aim of this report is to be applauded: to raise the awareness of both forms of PS within the medical community, and especially the various ways it can appear in adults.

For those like myself and (I expect) most of our readers, the article’s value is also in its acknowledgement that the infant and adult forms of PS are related, and that the infant form does not necessarily end with a simple surgery.  Far from it, as many of us have well come to know!

The second report can thankfully also be read in full by those interested in more detail.  It outlines the very large decline in the number of adult PS sufferers needing surgery.  I have already posted about this.

downward_graph_smallThis study was undertaken by a York (UK) body gathering data on peptic ulcer disease, and based on the statistics from the 3 kinds of stomach surgery done on 4,178 adults and how often adult PS was found during these procedures.  The study ran from 1929 to 1997 and included people born between 1889 and 1959.  It found that the age at surgery fell during these years, that PS was found in 17% of the earliest patients, and just 3% in the last group, and that gastric surgery rates fell markedly (although not uniformly) during the almost 70 years under the lens.

These results show very clearly the effectiveness of modern medical treatment for stomach conditions and introduced in 1977; this includes acid-suppressing medication which reduces the formation of gastric ulcers and resultant scarring of the stomach wall and pylorus.  However, the reduction of PS numbers was even greater than the falling numbers of stomach surgery, suggesting that a number of factors are at work, including diet, medication, and the management of upper bowel disease.

Once again, the great majority of readers will be less interested in the medical messages of the report than in what it might mean for interested lay people.  What do these figures mean for you and me whose history includes PS?

  • yay1People who have had infant PS are less likely to have serious long-term effects than they might have expected some 40 years ago or earlier, thanks to better diet options and medication.
    The fact that today we can read much more about the long-term problems experienced after infant PS is a reflection of our access to the media, not of rising numbers.
  • People who have had infant PS are ever less likely to need further surgery for ongoing problems including a renewed stomach blockage. We need to be aware that for some of us these problems are significant, testing, and often interminable.
    The report states what many have found (as I have read), that surgical responses to such problems are not only severe but also likely to be ineffective in the longer term.
  • Peptic ulcer disease continues today but it now very rarely results in PS.

So – generally good news for the PS-aware community!  My next post will review several other medical articles on adult PS.

Pyloric stenosis surgery – “somewhat improved”

Has the treatment of infant pyloric stenosis (“PS”) improved with the years?

Yes!  In a recent post I listed many of the clear and obvious ways it has.

Adults struggling with IBS, adhesions, or PTSD may well doubt that; any and all of these can at times be linked with their infant surgery.

The mother I read about recently must surely also doubt that much has been learnt: she was diagnosed with PTSD a few months after suffering with her newborn through several weeks of slow and shoddy diagnosis followed by “last minute, life-saving” PS surgery.

And the continuing avalanche of parents’ posts on social forum sites like Facebook and BabyCenter show this hapless mother is far from alone.

However, what I wrote in the above-mentioned post stands: it is beyond doubt that, thank God and thanks to the medical community, infant surgery including the treatment of PS has made huge progress.

Infant surgery03Last year I read the summary of a 2014 report that supports the claim that the actual surgery to remedy PS has also improved – but only marginally.  The survey evaluates the records of 791 little PS patients of a pediatric surgeon over a 35 year period (1969-2003).

Most of the results reported in the Abstract of this article (sadly, all that is publicly available) merely confirm the usual facts about PS, information that will not surprise those who know something about this condition.

  • 82% of the patients were male and 18% were female.
  • The average age (presumably at surgery) was 38 days and ranged from 7 days to 10 months.
  • Only 5% were not Caucasian.
  • 10% had a family history.
  • 15 babies (3.1%) were premature at the time of diagnosis (so in fact, many more).
  • 9% had other conditions or abnormalities.
  • 10 babies (1.2%) developed PS after surgery for another condition.
  • 13 (1.7%) were treated medically and avoided surgery.
  • All the pyloromyotomy operations were done by open surgery: the incisions used were sub-costal, transverse, or upper midline.
  • 14 babies (1.7%) had other surgical work done (presumably including herniation).
  • 87 of the operations (10%) were followed by complications: 1.1% happened during the surgery, and 9% post-operatively.
  • 2 babies died.
  • Other evaluation results showed some areas of improvement.
  • When ultrasound imaging was used, the age at diagnosis was reduced by about 10 days.
  • All the operations were done using general anesthesia and endotracheal intubation (breathing tube).
  • From 1982, precautionary antibiotics were given before surgery and this resulted in wound infections being reduced to 3.9%.

This surgeon was also responsible for correcting the inadequacy of the work of some non-pediatric surgeons, and these statistics make grim reading:

  • There were 13 such little patients, 12 of them transferred from non-pediatric surgeons.
  • These 13 accounted for 16 complications including one death.
  • 5 of the babies needed further surgery: 4 for an incomplete pyloromyotomy and the other for a perforation of the pyloric canal.

The report drew these conclusions:

  • IHPS should be considered in any vomiting infant.
  • Ultrasound examination allows earlier diagnosis.
  • Serious complications are uncommon and avoidable, but recognizable and easily corrected.
  • Surgeons who do more than 14 pyloromyotomies per annum see fewer complications.

This report (as stated above) deals only with the actual surgical treatment of PS, and not the complaints of many about the total management of this condition.  The report featured does not survey the standard of the diagnosis of PS, nor the often uninformed, sweeping, and simplistic reassurances given about the possible short- and long-term after-effects of PS and its surgical treatment, about which so many doctors and parents seem to be quite “in the dark” (or possibly in denial).

RUQ PLM-3This blogsite and the social media posts of countless parents and patients express gratitude for the survival of almost every PS baby, ever since the Ramstedt pyloromyotomy (surgical operation) rapidly became the standard treatment after 1912.

It is often remarked that the Ramstedt pyloromyotomy is one of the few surgical techniques that has continued as the standard and virtually unchanged since it was introduced.  It is relatively quick and simple to perform, and almost always immediately effective (as much as can be expected of any surgical procedure).

What the report implies but fails to acknowledge is that many older surgeons continue to perform Ramstedt’s pyloromyotomy using the old and often disfiguring open incisions.  Other recent statistics show that the new and cosmetically superior laparoscopic surgery is now used in over half of PS operations.  Understandably but sadly, many older surgeons resist mastering current best practice.

What then is clear from the material collected and reviewed in the two posts (this one and the linked post)?

  • The overall management of PS has seen huge progress.
  • The actual surgery for PS has changed little in a century, but continues to be marginally and slowly improved on.
  • There remain several areas of immediate and significant concern to PS patients and their parents which the medical community is loathe to recognise, let alone seriously tackle.

And therefore numerous PS parents and patients will continue to speak up, network – and post!

Pyloric stenosis then and now

Medical science has made huge progress in the past century.

  • If I had been born 30 years earlier my infant pyloric stenosis (“PS”) would have given my parents a horrible choice: Submit your long-awaited 10 day old firstborn son for major and horrific surgery (probably without an anesthetic) that killed around 75% of babies, many of shock, blood loss or infection – or see your little one die of thirst and starvation.
  • Modern medicine01My father suffered from mild diphtheria and tuberculosis – diseases that are now virtually unheard of in developed countries.  My family is thankful that Dad does not seem to have been seriously affected.
  • One of my grandmothers was almost blind for the last decade of her life and although my father was able to have his cataracts removed, it meant several days in hospital and wearing thick and heavy glasses for the rest of his life.  My eye problems were solved with three day-surgery procedures: a retinal detachment restored 95% of sight in that eye and my 2 cataracts were replaced by lens implants that make life much easier than having to wear glasses.
  • My mother-in-law had 4 children, then suffered post-natal depression and never recovered, dying at age 90; in this sad and dark condition she had another 5 children.  My wife and I have been able to manage our fertility and enjoy life as well as loving the family we planned.

The several PS Groups’ Pages on Facebook and other internet forum sites (e.g., BabyCenter, MedHelp, PatientUK, and Topix) make it clear that even today, the distress of having a baby with PS does not always end after the scabs from the surgery fall off.  Even in adult life, the long-term effects, although not universal, can be inescapable and extremely troublesome. But just think of the changes from what PS and its surgery were like when the older readers of this post (and their parents, most now passed on) experienced it…

  • General anesthesia, especially for a baby and even today, will always carry a small risk and may still be found to have long-term effects, but it is nevertheless always used and widely regarded as very safe.
  • breastfeeding1PS babies undergoing surgery no longer suffer maternal deprivation: the danger of infection is usually well-managed and hospital rules and staff are no longer as severe as they were.  Mother and baby only need to separate for only an hour or two.  In my case in 1945 it seems to have been some 2 weeks – and both Mum and I continued to feel it.  Today almost all babies can be held and nursed almost immediately after they recover from the operation, and most are cleared to return home within 2 – 3 days.
  • Single port pyloromyotomy scar

    Single port pyloromyotomy scar

    Surgical techniques have improved vastly.  PS surgery once involved an incision which left a scar that grew to an average of 10 cm (4 inches) and usually became quite indented and puckered.  The wound was closed with sutures that left significant additional dimple scars.  No wonder many of the generations who were disfigured by their life-saving surgery took years to come to accept their scar – if ever.  Single port laparoscopic surgery for PS has now become “best practice”: all the work is done through one port (or tube) which is inserted through the navel, and if it is well done and under the right conditions this leaves no visible scarring.

  • Parents and PSers now have access to information, networks and therapies that can help them to understand the physical long-term damage and the psychological and emotional effects that are possible after infant surgery.  When fully effective treatment healing is not possible, the availability of the above help and support will still give many benefits.

This blog, like many of the parents and adult PSers who subscribe to the online forums, wants to see PS becoming more quickly recognised more often, its immediate and long-term after-effects better understood, acknowledged and managed, and not a small number of the medical profession having a much better (more respectful, informative and honest) attitude to PS parents and patients. But I also want to take note of and celebrate the progress that has occurred in important aspects of this condition… in my next post.

Networking after pyloric stenosis (2): blockages and pain

The previous post looked at some of the benefits of the internet age enabling us to network with people worldwide about issues of common interest.  I gave links to some of the websites I have found very useful for people with infant pyloric stenosis (“PS”), whether they be parents or survivors now in their adult years.

This post starts a series in which we listen to what people from all over have shared about the hassles they have experienced before and more often after PS surgery.  True, we can be grateful that the problems mentioned seem to occur to only a minority, and there is probably a “silent majority” who find they can easily put their PS nightmare behind them and “move on”, never or hardly ever thinking about it again.

However, that does not make the problems about which so many take the trouble to write any less real and troublesome.  The medical world’s ignorance about PS is widespread and reprehensible, as the many online forums and this blog have often demonstrated and stated – but in 17 years of following this subject area I have never yet seen a single research report on the frequent and serious grievances about shoddy diagnosis of this rather common condition!

The fact that ongoing problems occur as often as they do after PS flies in the face of the bland assurance of too many of those doctors who know anything much about PS: the common mantra is that “PS is quickly and easily fixed, with only rare post-operative problems and no long-term hazards”.  Ahem, what was that again?

Adhesions can form without an obvious cause, but usually result from damage to tissue and organs caused by surgery, such as those shown in this diagram caused by an appendectomy.

Adhesions can form without an obvious cause, but usually result from damage to tissue and organs caused by surgery, such as those shown in this diagram caused by an appendectomy.

In this and the following posts I pass on some of the comments from six PS survivor networks on Facebook.  This selection of comments is about adhesions and related conditions following PS surgery.  This blog has devoted several posts to the post-operative adhesions which can cause bowel blockages and pain: readers can find these posts by using the Categories box near the top right of this page.

KD was born in 1949 and wrote:
I am a 64 year old survivor.  Have over the past 2 years had a lot of problems with partial small bowel obstructions that are apparently caused by adhesions very probably from my PS surgery all those years ago.  I am also lactose intolerant and have IBS, and often have pains at the top of my scar!  I have bowel adhesions caused by scar tissue my surgeons say from that P S op all those years ago… in between i am ok, plus years of having pain at the scar site,
Electric Heating pads, hot baths and lots of either swimming or exercise are really good to keep things moving.  Strong pain killers are a whole other issue, and you have problems from them too, so I try and avoid them but sometimes u have to.  Every time you have abdominal surgery you run the risks of more adhesions so be careful about that too.  I get small bowel obstructions with my scar tissue, not nice.
I had it done at 12 weeks.  Huge vertical with big dots horizontally…  It is amazing to see how far surgery has advanced.  Have been embarrassed by my scar all my life and never wore a bikini.  I have suffered so many digestive problems.
now I have partial bowel obstructions caused by adhesions which surgeons say probably came from my ps op all those years ago, as I haven’t had any other abdo surgery.  I still feel pain at the top of the scar from time to time.  Weird!!

TF, 1977
I had surgery for this in 1977.  I have a ton of scar tissue and adhesions everywhere because of it.  Also my small intestines are stuck to my abdominal wall because of all this.  Been painful for the last year, so I’m going to have to have surgery soon to fix all this.  Just have been going through all the tests to be sure that is the problem and ruling anything else out.

LH, 1980
I have an almost 5 inch scar that has is bulky and is such a mass that it has attached itself to my diaphragm.  I am going to a general surgeon in a couple of weeks to get it checked out and possibly reduced a bit.
I was just diagnosed anemic and put on iron pills after lots of testing and a colonoscopy.  It’s great to know that the iron might be a part of the ps stuff.
Mine bothers me when I exercise because I breathe heavily, so my diaphragm moves a lot then it stretches the scar tissue and tears.  Once I have been exercising for a while as long as I keep it up regularly it doesn’t shrink again and I’m good.  But if I stop it shrinks and hurts like hell when I start up exercising again.
How do I know it’s attached?  I was just told by a doctor years ago… I explained the pain and after an ultrasound they confirmed it.

JM, 1986
I get bad pains like a stitch but worse.

PM, 1969
I am having some tenderness at the surgery site and acid issues.  Wondering about scar tissue?  Just had an endoscopy to try and figure things out.  Anyone else have issues many years later?

AB, 1992
I have acid reflux and gastritis as well, they are side effects from the surgery.
I had PS as well and surgery when I was a month old.  I’ve always had pain with my scar too.  It gets hard at time and sinks in very nasty.  I’ve had ultrasound scans, even cat scans, mri scans and xrays.  My doctor told me that my scar didn’t heal properly internally and as a result I have scar fibers extending to my ribs and even to my liver.  All the doctors say that I have nothing to worry about because in time they will tear on their own.
I have a hard time bouncing back [after a stomach bug attack].  Leaves me weak for weeks… sometimes months.  My doctor says it’s because my stomach went through such a major change when I was a baby.

RR, 1987
I had pyloric stenosis surgery at 10 days old.  I went to the E.R yesterday because I was having bad pain in my rib / back like someone had punched me a few times.  I was given an ultrasound scan but nothing was found.  I was told it could be a muscle strain or scar tissue issue from my surgery… Never did I think of my surgery from that long ago: I had always overlooked it.

Next time:  poor diagnostic work

Pyloric stenosis: a horror story

All surgery involves risk, but only the very desperate would sign for an operation they know has a high risk rating.  The operation to remedy infant pyloric stenosis (“PS” or “pye”) has been done worldwide for over a century now, with steadily falling mortality (death) and morbidity (complication) statistics.

Yet risks remain, and the only perils most doctors talk (and seem to know) about are the immediate ones.  The long-term hazards are in fact also quite common and unpleasant if the web forums and material I have collected on this blogsite are any indication.

This post is about a fairly recent botched PS operation in the UK.  The mother of a young lad now 4 years old shared her story on one of the Facebook “Pages” which lets PS parents and ex-patients share their experiences.  Here is her account, passed on with her consent…

SeatonHarlan age 4 Fb 140502-2Here is Harry [not his real name] aged 4 years.

He was a 29 week prem baby.  He came home at 8 weeks.  Vomiting started within the week.  (I literally didn’t dress for a week, went from one dressing gown another).

As a mum of 2 other prem babies and one plus term, I knew it wasn’t reflux.  However, I thought it could be milk.  We changed milk till blood tests revealed he was “deranged”.

A scan later revealed pye.

We were transferred to another hospital as he was oxygen dependent and 4 pounds, consent was signed and mum was reassured.  I questioned anaesthetic use on a tiny baby and was told “this operation is like pulling an adult’s tooth, it’s so easy”!

Surgery was the next day.  Post op bottle to be offered at 6 hours then he goes home.

Bottle declined, baby distressed.  This went on almost 36 hours.

Resulted in my boy arresting at the point of repair surgery.  He had e-coli poisoning, peritonitis, multi organ failure and any other complication that could happen did happen!

It transpired his duodenum had been cut and ignored.

We were told he had at the most 30 minutes and they could do no more.  He then developed abdominal compartment syndrome.

Harlan's belly will always tell the story of his fight for life.

Harry’s belly will always tell the story of his fight for life.

He however is a very stubborn boy: he showed them he was in charge!  He did require 7 lots of bowel repair surgery, and the 4th operation revealed his liver had been cut also!

He came home with a palm sized open wound that looked into his bowel.  New skin grew back!

I have cut out lots as I can’t word it appropriately!

Today he has brain “damage” and a killer scar.  But he is an amazing child.

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On the basis of the mass of information available on the web I add these comments.

The duodenum is the section of the gastric passage that follows from the stomach and pylorus.

IHPS diagr25A perforated duodenum resulting from a PS operation is rare and will usually represent what we call “a botched job” although medical journals won’t describe it that way.

Competent surgeons know (a) how to avoid opening the duodenum, and (b) what to do when it happens.  A surgeon who cuts the duodenum and doesn’t discover this immediately was probably careless or incompetent and unprofessional.  And a hospital where this happens was most likely negligent in not enforcing its policy about the checks a team needs to complete to minimise surgical mistakes.

What should have happened is quite simple.

The Ramstedt PS operation involves splitting the baby’s enlarged pyloric muscle down to the mucosa (the inner lining of the food passage) so that the ring muscle’s spasming is stopped but the passage does not leak partly digested food.

PS surgery02If the slit in the muscle is not deep or long enough, the muscle will regrow and the procedure is ineffective and will have to be repeated.  If the split is too deep the mucosa is ruptured, and if it is too long the stomach and/or the duodenum at either end of the pyloric muscle ring are perforated.  Accidental cuts are stitched, and if necessary a patch is sewn over the cut.

PS surgery04Every pyloromyotomy operation follows a protocol which includes testing for bleeding and leaks.  Bleeding is sucked or dabbed away until its origin is clear.  Before the abdominal wound is closed, or in a laparoscopic operation before the trochars (tubes) are withdrawn, air is pumped into the gastric passage and the theatre team looks for bubbles that would indicate a break in the passage.

When a perforation is only discovered after the operation it is life-threatening because the leaking gastric material will have had some time to set off peritonitis in a small baby.

When a baby like Harry is saved it is usually only after a string of further complications and the result of very excellent nursing care!

Although horror stories like this one are rare, they add to the many other non-life threatening but still significant stories about the grief that PS surgery can cause in the infant years and/or through any or all of the stages of adult life.

One of the reasons for this blog is to share information about the hazards of PS surgery and to increase the awareness of the little known but widely and safely used alternative – medical treatment.

Harry’s mother added these notes 2 weeks after the above material was posted –

Only about 2 months ago we have had a full admission of 58 counts of negligence.  They really couldn’t not admit this as Harry’s hospital notes told their own tale.  His solicitor and barrister said only they had never dealt with such a catastrophic set if mistakes.  They can’t believe what Harry fought and won!
He will receive a substantial payment but it’s on hold to see what the future holds.  The nature of his brain injury could cause significant problems so we have to see what the next few years bring.  He has a golf ball size scar on his head as well from a pressure sore.  He’s had surgery on this scar 3 times as it spreads like wildfire.  As it will make no great difference we have been advised to leave it a few more years.  I don’t want him losing anymore hair and becoming subject to bullying.
He has other problems associated with all this and these are all under investigation.
I’ve been told there will be no action against particular staff members unless they are “repeat” offenders!  I can however take civil action against individuals if I choose to.  The surgeon was a locum and he is not there.  But the main problem wasn’t the accidental damage, it was what happened afterwards in respect of poor nursing care.