Category Archives: Treatment options

Why are there so many kinds of scars from PS surgery?

As a boy growing up with a scar cluster front and centre on my belly, I found I had several fixations which have never really left me.

  1. I was desperate to know what caused this scar, left by pyloric stenosis (“PS”) surgery I had when just 10 days old.  Apart from my mother telling me several times that I had been “a little bit sick as a baby and a doctor had made me better” it wasn’t until much later in life that I pieced that puzzle together.
  2. I was also desperate to hide my belly from public view.  I shrank from people’s inquisitive stares and inevitable questions and felt deeply embarrassed because I couldn’t handle, let alone answer them.
  3. Whenever I saw people in beach or gym attire (and with a bare midriff) I was ravenous in my search for anyone with a scar similar to mine – but never found anybody like me in that way until in my adult life.

People02Only in recent years have I learnt that this somewhat bizarre cluster of phobias and fixations is by no means unusual for survivors of infant surgery.  As mentioned in a recent post, there are also many extroverts who totally escaped my problems – and often find them rather silly.

Obsession #3 has continued with me (and it seems with others in their more mature years).  In recent years I have seen quite a number of people with what look like being scars from PS operations, and this is largely because I have learnt that this “procedure” is done using a number of surgical techniques.  So my mind is now programmed to search for and recognize half a dozen scars!  Yes, weird and whacky!

The development of the internet has birthed several forum sites where people like me can network and break out of their feelings of isolation and self-flaggelation.  The web even allows us now to compare scars and to have many of our questions answered much more fully than my 1940s parents would ever have been able!

Recently Facebookers with an interest in their own or their child’s PS mentioned the sheer variety of scars from repairing PS, a fairly common condition remedied with a relatively simple technique.  My own research of this whole subject area enabled me to attempt an answer –

The pyloric ring muscle usually sits under and behind the right (and exit) end of the stomach, so below the right ribcage.  It can be fairly easily accessed from anywhere below the ribs and above the navel.

The navel (or umbilicus) itself is (or was once) often avoided as a point of access, especially if it hasn’t fully healed after the baby’s birth and as its folds are a haunt for germs.  The umbilical incision (“Tan Bianchi” after the surgeons who promoted it) is a semi-circle incision usually over the top of the navel, sometimes extended by one or both horizontals (making it an omega sign): through this the pylorus is worked on. The Tan Bianchi incision is now often used as it allows open access but (if done well) leaves a minimal scar.

The keyhole op (“minimal access surgery” or MAS) was introduced in the 1990s: a 5mm probe (tube or “port”) through or near the navel inflates the belly and adds light, and then two other probes (3mm) higher up allow instruments to enter and do the work on the pylorus. In recent years “single port MAS” has been introduced by which everything is done through the one port at the navel.  Special care with infection control is very important, and this technique comes with a higher number of infections, but it also leaves minimal scars and is therefore preferred by parents.  MAS requires a higher level of training and skill than open surgery, but experienced surgeons can use it with similar results and complication profiles.

The open incision was and is still the easy one for surgeons, but growing numbers of younger pediatric surgeons have now learnt the umbilical and/or MAS techniques.

Abdomen incisions1Open surgery involves cutting through layers of skin, fat, muscle, and the fine material that holds our abdominal bits and pieces in place, plus of course nerves and blood vessels.  There are several layers of muscle forming the wall of the abdomen, each running in different directions to enable them to do a variety of tasks and to add toughness.  Down the front and middle of the abdomen, running from the breastbone to the pubic region, is a strip of tough connective tissue called the “linea alba” or “white line”: it has less blood vessels and nerves and anchors the various muscle sheaths.

Conrad Ramstedt, who in 1912 pioneered and promoted the technique that is used to treat infant PS, used the median (or middle) incision down the linea alba that was and is still used for much (and especially major) abdominal surgery.  It gives good access, can be easily extended, and avoids the complex muscle layers on either side.

Other surgeons preferred to avoid this area for relatively short incisions, as the linea alba’s poor blood supply slowed healing and therefore increased the risk of wound rupture.  These doctors moved their vertical incision to the right, the “para-median” incision.

In the 1930s, two other incisions became popular for PS surgery.  Both avoided the vertical openings which it was claimed came with increased exposure of internal organs, and more wound complications.  By cutting through the several layers of muscle and repairing each separately, it was claimed that the wound was easier to control.  One of these incisions was angled just under the right ribcage, the Kocher or “gridiron” incision.  The other was transverse (“across”) and became the most popular one used for PS surgery to date.  Transverse incisions are placed wherever the surgeon likes or locates the pylorus: some are almost at navel level, other horizontal just under the ribcage, and most in between.

Reading the journal articles that advocate the writers’ incision preference has led me to conclude that a surgeon’s choice seems to depend more on their classroom or craft training than on truly decisive benefits or hazards.

The development of the umbilical and MAS techniques has occurred only since 1990, urged on by the cosmetic benefits which are usually and typically urged on conservative and technique-oriented doctors by the concerned parents of unknowing babies.

Postscript

Since writing this post I came across a website under the title of Common Abdominal Incisions.  It sets out in (what I find) fascinating detail and in generally understandable English the various considerations, benefits and hazards regarding the incisions used for many of the commonly used abdominal surgeries, and what each incision involves.  In the past I have sometimes found it necessary to “translate” the information given on a medical website, but in this case that seemed quite unnecessary.

Understanding infant pyloric stenosis (Conclusions)

In the previous few posts I have overviewed and “translated” in some detail the major and professional medical section of a small book recently published by Dr Ian M Rogers and myself, with the descriptive title, The consequence and cause of pyloric stenosis of infancy: Two personal stories.

The reason for this series of posts?

At least some of the survivors of infant pyloric stenosis (“PS”) and their parents will be interested to know and understand this condition better, as we keep being told that “we still don’t know what causes it”.

Let’s face it, “knowledge is power”, and how many parents don’t wish they knew more about PS when they are suddenly and horribly faced with it?  What causes this?  What can and should I do?  How do I look after my sick baby when I feel the doctor fobs me off? Can my beautiful baby avoid surgery for this? What are the possible short- and long-term side effects?

Although I have never had a child with PS, I had it as a baby and wish I had known what I know now much, much earlier.  In the past this was virtually impossible, but the power of the web has changed this completely.

True, there are still some areas that are not fully understood, but it’s also true that drawing on a lifetime’s work with PS, the retired professor Ian Rogers is able to give us a clear and (it seems to me) compelling explanation of what does in fact cause PS.  The fact that he has written his part of the book using a lot of medical language must not keep his knowledgeable and compelling explanations and rich insights from those of us most affected by PS!

In this the last post of this series, I look at the last three of 6 questions which are often regarded as summing up the mysteries of PS, but which can in fact be answered in the light of Ian Rogers’ discussion of the discoveries that together explain PS.

4   Why is PS more frequent in the first born?

first-time-mom2First-born babies are cared for by cared for by first-time mothers.  PS babies are hungry and vigorous, ravenously hungry (at first), and unusually, the condition does not leave them feeling nauseous but immediately voraciously hungry for more.  Understandably but tragically, this gives the stomach and the acid-caused work-enlarged pyloric muscle no rest; an experienced mother will be more inclined to give feeding a break.

Mention is made of a 1962 article by Dr N M Jacoby, who compared two groups of 100 babies treated medically and surgically for PS, with one baby (only) of each group dying.  Of the medically treated children, Jacoby stresses the importance of (1) relative under-feeding, (2) the drug involved (atropine) being carefully used in relation to body weight, and (3) regular stomach washouts.  Two of these cautions can be linked to the hyper-acidity theory.

It is often mentioned that PS occurs far less frequently in under-developed countries: this also fits the theory, although more factors may be involved.

5   Why does pyloromyotomy, and not gastro-enterostomy, cause the tumour to disappear?

There are reports about 52 year old patients whose pylorus was found to be still enlarged after a gastro-enterostomy surgery in infancy to overcome PS; after pyloromyotomy the pylorus returns to its normal condition after several weeks.

Unlike gastro-enterostomy, pyloromyotomy disables the muscle ring and widens the opening temporarily, which breaks the cycle of its becoming enlarged by overwork.  Gastro-enterostomy was used before pyloromyotomy was discovered and is still used occasionally: it by-passes the pylorus which removes the immediate feeding problem but the pylorus continues to be over-stimulated by an over-acidic stomach.

6   Why does PS present at around 3-4 weeks of age?

Dr Rogers mentions two possible reasons.

It could take some weeks for higher than usual acidity to enlarge the pylorus sufficiently to make a clear diagnosis of PS possible.  But if this were so, we could expect other problems caused by hyper-acidity to arise at this time – and they don’t.

More likely is that the switching mechanism between alkalinity and acidity is more immature than usual during the first weeks.

In evolutionary terms, the benefits of the normal high acidity in a baby during the first weeks (incl. guarding against microbial attack as mentioned earlier) outweigh the negative of a few babies with hyper-acidity having problems!

Other lines of enquiry

1   Genetics

genetics1Genetic studies have shown that more than one gene is involved in PS, and that the condition is multifactorial: it can be caused by any one or more of several factors.  This is confirmed by studies of identical twins who are more likely to share PS than non-identical twins or siblings but far from always.

It has been found that PS infants tend to have higher birth weight, and (anecdotally) they may also become more athletic!

2   Chemistry of the pylorus

Prof. Rogers gives three reasons why the reports of chemical abnormalities of the pyloric muscle (the presence of growth factors and the absence of other chemicals) are theoretically attractive but do not stand up to scrutiny.

3   Infection

The analysis of swabs taken from the nose and throat of babies have shown no abnormality in PS babies.

A previous post has mentioned links between hyperacidity in PS babies and in adults infected with a stomach bug, Helicobacter pylorus, which can trigger gastro-duodenal ulcers.  But several studies of PS infants have not discovered any H. pylorus infection.

Dr Rogers remarks how strange it is that none of these studies links the hyperacidity triggered by a H pylorus infection with the hyperacidity that is part of PS.  Strange indeed!

Conclusion

Dr Rogers sums up:

Constitutional hyperacidity coupled with developmental hyperacidity begets pyloric contractions which begets work hypertrophy which begets IHPS.  IHPS begets further hyperacidity, and so on.
Maternal anxiety in the novice mother means that the hungry but vomiting baby is frequently fed with more pyloric contractions and more work hypertrophy – and a bigger tumour.

Wryly, he adds that it seems there is nothing new under the sun, and that “we are almost back where we started”.  In 1921 Dr J Thompson already proposed that the pylorus spasming and overdeveloping through over-work were the cause of PS, and still earlier, in 1903 Dr W Freund had suggested that excess hydrochloric acidity was a key factor.

The future

Dr Rogers urges that his theory is “perfectly testable”.

  • It is well known that PS babies’ serious loss of acid through their vomiting must be remedied before surgery, as their alkalosis (excess alkaline in the body) causes dangerous hazards during and after the operation.
  • ranitidine01Adults similarly affected by vomiting and acid loss are quickly and effectively treated with drugs to reduce the excessive release of acid.
  • Successful medical treatment of babies with PS is regularly reported: intravenous atropine is used to rapidly reduce the size of the pyloric tumour while the malnutrition and chemical imbalance are corrected.
  • Surgical treatment is now more prompt with a drug (cimetidine) that rapidly corrects alkalosis.  The author mentions an as yet unpublished report that this drug when given to mild cases made surgery unnecessary in 16 of 17 cases.
  • Another powerful acid blocking drug, Ranitidine, has also proved to be very effective in avoiding surgery when PS is recognized early; it should also be useful when surgery is not safe or accessible.  Dr Rogers then briefly outlines several other avenues of treating PS safely and medically.

He concludes his comments on considering non-surgical treatment by adding:

Such a pre-operative strategy with babies with IHPS is long overdue. It should not come as a surprise if we find that such temporary treatment promotes a lasting cure. 

Can pyloric stenosis be a mild case?

How long is a piece of string?  The variety of ways infant pyloric stenosis (“PS”) can raise its horrible head is like answering that hoary question.

Almost two years ago I posted an attempt to answer this question,  It is not only a post still well worth reading if you are asking yourself this question.  The post had several responses which underline how frustrating and kaleidoscopic it is to answer several of the questions about PS.  Let me run through the main parts to my answer again here.

Pyloric Stenosis or pylorospasm?

Whether there is a significant difference between Pyloric Stenosis and Pylorospasm has been argued at least since the early years of the 20th century and it is still debated in medical circles.  Those favouring the distinction describe Pylorospasm as a spasming of the pylorus triggered by the nerves and resulting in the delayed emptying of the stomach – but nothing much more .  It is agreed that true PS involves the thickening and hardening of the muscle band of the pyloric ring, and when advanced enough this would not let any food pass into the duodenum, usually with fatal results.

However, others have preferred to see Pylorospasm as the beginning or a milder form of PS.  There is a difference, but it may only be clear from an ultrasound study, as this article explains and illustrates.  Another useful article may be read (although only in summary) here.

From my simple and probably simplistic description it should be clear that Pylorospasm is not serious enough to warrant surgical and perhaps not even medical intervention, and that a full PS will be fatal unless there is some form of intervention.

Baby sick2 (Medium)To add to the confusion, PS is often termed “Pylorospasm”.  I well remember that in my native Netherlands the condition I had was called “pyloruspasmus” even though it was clearly a full-grade PS!  I find that the same confusing interchangeability continues in at least several different languages today.

The bottom line is: some misbehaviour of the pylorus is mild enough to not warrant surgery.  Not all projectile vomiting is deadly, so doctors will sometimes await further developments.  This is not to be confused with the fact that many doctors are accused of belittling parents, not taking time for careful diagnostic questions and tests, and brushing off parents with talk of reflux – all this when the baby has lost significant weight and condition, and even when the parents mention the family’s history of PS.

Many cases of PS do not go to the operating room

Google “I had” together with “pyloric stenosis” and you will find articles, forum comments and posts that support the above statement.

There are many mentions of babies with what was clearly PS and whose condition was responsibly judged not to be severe enough to justify surgery.  But these people in later life continued to battle with PS-like symptoms for many years – or lifelong.  Some eventually sought surgery (usually more major than an infant pyloromyotomy) and some did as best they could by managing their food intake and distressing symptoms.

Pyloric stenosis can continue to “grumble” whether or not there has been surgery

As I have stated many times, many doctors promise parents that a safe, simple and quick operation will solve all their baby’s PS problems and that there are most unlikely to be any after-effects.

Surgery can be very successful in treating PS but it can also lead to short-term or lifelong symptoms which seem to be similar to some extent to mild PS: reflux and IBS, sensitivity to gagging and vomiting, overweight or chronic under-weight, etc.

Mild PS which is not dealt with by surgery is sometimes not treated at all or is treated with medication such as Atropine sulphate or Ranitidine.  Either of these two courses may also lead to lifelong and troublesome gastric misbehaviour.

It seems beyond the ability of medical people to know whether a particular set of borderline or mixed symptoms should be diagnosed as PS, mild PS, pylorospasm, or something else.  It also seems to be impossible to predict the future course of any case of PS, whichever way it has been treated or not treated.

A thorough and substantial research project or two would be so valuable to obtain a clearer picture of the consequences of various levels and treatments of this rather common condition in babies.

Medication can treat many pyloric stenosis cases successfully

In most “Western” countries, the medical treatment of PS with Atropine sulphate or Ranitidine has usually been given no or scant consideration.

These two drugs relax muscles and allow the pylorus to relax, reducing its swelling and allowing it to open and shut without surgical intervention, but because of their effect on all muscles they must be introduced over several days and under careful medical supervision.  This course of treatment has been used for many years by pediatric specialists in many countries, and a recent Japanese project found its use succeeded in avoiding surgery in almost every case in the trial.

Parents who could or should consider medical treatment for their baby must 1) know the symptoms of PS well, 2) have gathered strong evidence of their baby’s condition and perhaps have had previous experience with this malady, 3) have a baby who is not close to death, and 4) are willing to learn how to use the medication.  They may also need a supportive person to stand by their side as they may need to insist on being heard and helped by their doctor.  It must be realised that the safe use of medication requires early diagnosis, a baby who is not frail or newborn, and a baby whose condition allows the several days necessary for the drug to take effect.

Interested parents should use the “Categories” search box to the right of this page to find and read posts like this one on “the hushed up alternative to PS surgery.

Pyloric stenosis surgery’s possible long-term effects

One of the things that so often angers me as a survivor of infant pyloric stenosis (“PS”) is a key assurance that doctors so often give the parents of these babies (as reported by them) and so common on information websites –

Superman MD1“PS and the surgery for this condition have no long-term effects.”

If only it were true!

While this is promise may be true for the majority of sufferers (and please note: “may be true”), it is at least a gross generalisation.

The facts are –

  1. Web forums such as Patient UK and Topix, several blogs devoted to this and related subjects (see the Blogroll to the right), and online social pages such as Facebook include people’s accounts of unhappy experiences.
  2. In 17 years of researching this subject area online, I have not found even one substantial medical research report on the long-term effects of PS and the pyloromyotomy (PS surgery).  There have been several small and narrow studies based (say) on 10-15 years of following-up those having surgery in a particular hospital, but many of the problems people have are much more long-term and yet seem to be linked with the condition and/or operation.
  3. It is significant that my 2011 post on this topic is the 6th most read on this site.  A total of over 50,000 visits hardly represents the majority of the world’s PS people – but it’s not a trivial sample either.  More than half of my 160 posts to date have given significant attention to this subject: interested readers can find them (and their titles) by clicking on the “long-term effects” tag to the right.  These 86 posts include some written about my own struggle with the long-term effects of PS and the operation I had in 1945.

A post I wrote recently surveyed much of this subject, under several sub-headings.  This post will restrict itself to a somewhat more personal “take” of how others and I have been affected by PS.

Adhesions

As mentioned in recent posts, post-operative adhesions may affect seriously only a small proportion of those who have had abdominal (and other) surgery. I have corresponded with survivors who are afflicted with adhesions and I have found their stories heart-rending.  Everyone develops adhesions after PS surgery, but if they trouble you, the pain, complications, untreatability, side effects and uncertainties are almost always never-ending.

So why does the medical profession dismiss the documented and significant risk of adhesions as “a minor risk” when in most cases PS surgery can be avoided?  Why aren’t parents empowered to understand and work through the facts and make their own choice?  Why do information sites and powerful medical staff so often and/or effectively present surgery as the only real choice?

Post-traumatic stress disorder

PTSD is another area of known risk that is shrugged off by the medical establishment (including its training, practice, policy, research, publications, administration, etc).

PI know and am grateful that much more is known and done about PTSD today than in even the fairly recent past.  But knowledge does not nearly always translate into knowledge-based practice, especially when any degree of self-interest is involved.

In Australia we plan to spend 4x as much on the centenary of a World War I conflict (Gallipoli) as we’ll spend over the same 4 year  period on the support and rehabilitation of our military who have returned home from recent scenes of conflict with PTSD.  In some countries and circles, male and female circumcision are still routinely or commonly practised, both with and without analgesia (pain control).

Even when parents follow this practice for religious or family tradition reasons, it is inexcusable to dismiss the use of pain management.  To many outside the USA, it seems there may well be a link between the prominence of emotional and physical violence in US society and the prevalence of male circumcision.  Who can know how much depression, home and public violence, suicide and other signs of dysfunction are the result of PTSD recognized or unrecognized as caused by infant surgery?

It is not hard to trace the link between my PS surgery in 1945 and the relatively mild PTSD that has dogged me for much of my life.  Most infant surgery past and present causes a lot of trauma:
– the condition itself and
– the all-too-frequent effects of tardy diagnosis,
– the desperate needle-sticking and perhaps a cut-down to establish an IV line,
– awake intubation,
– separation from parents,
– pain and
– hospitalization.
To this we must add the relayed effect of what most parents tell us was their most traumatic experience ever.

Until the late 20th century, most of these factors were magnified: especially the maternal separation and hospitalization lasted for weeks and sometimes months.  To this we must add: awake surgery with a paralysing drug and intubation, often without even local pain relief and the “comfort” of a sugar cube laced with alcohol.

All this would not matter if we could still maintain today that “babies do not really feel and certainly don’t remember pain” – as many did until the 1990s.  But in 1987 Dr Anand proved that to be nothing more than wishful thinking, and much has changed since then – but far from everything that needs to change.

Again: how can doctors today maintain that the surgical remedy for PS is free of long-term effects?  Why aren’t the issues around this condition and the surgery considered responsibly and parents given the missing facts?

My personal story

ponderNot for a moment have I ever thought that everybody who has had PS and/or infant surgery will have struggled as I have.  For many years I dealt with my troubles alone, but with the coming of the internet I have been able to link up with and learn from others with the same past – and all kinds of stories of their personal journeys.

Like some and unlike others I grew up in a secret world of –

  • self-obsession (I’m sure I wore out a few mirrors and certainly wasted loads of time),
  • self-injuring (I learnt a lot and am thankful I did myself no lasting harm), and
  • searching libraries for anything to explain my scar and what caused it.
  • I discovered that I was fearful of especially doctors but also of anyone I regarded as in authority, and became passive-aggressive, internalising my anger.
  • Although I have functioned quite well in my work and relationships I am also known as the sole reserved, introverted reclusive in my immediate family of seven and even my extended family.
  • I love the water but at the pool and beach I never felt able to relax and enjoy myself except actually in the water.  For many years when out of the water I would keep my arms tightly folded to hide my scar from curious eyes and tug my shorts or swimmers up to my chest, forever annoying my mother who kept reminding me that this looked ridiculous – which I didn’t really care about as much as…
  • I lied, denied and pleaded ignorance when people did ask me what “that” was on my belly or what my scar was from.  I avoided phys-ed classes at school, sports and overnight camps which involved changing or showering in public, and my face blushed and heart raced whenever I heard any of a short but telling list of words.

way-forward-signIn one of my earliest posts I wrote at greater length about how I feel PS and my operation have affected my life. Whilst I have learnt that I’m not typical it’s also been reassuring to discover that I am not unique and a freak.  This is just one of the reason I urge parents considering surgery:

“Spare the knife and don’t spoil your child!”

And to any PS survivor “with issues” I say:

“Shit happens, but don’t let this spoil your life!”

Pyloric stenosis and adhesions

One of the most frequent long-term causes of grief after surgery for infant pyloric stenosis (“PS”) is adhesions.  This subject has been 3rd on the list of the most frequent of the 50,000+ visits to this blog, which is some indication that adhesions are not an insignificant matter.  So much for the assurance to parents when they submit their baby for an operation to remedy PS:  “This surgery never (or hardly ever) has any long-term effects”.

There are many informative websites devoted to the pain and other distress caused by adhesions, such as the one on the Better Health Channel of the Victorian Government in Australia.  I have often posted on this subject, as the “Categories” and “Search” boxes on the upper right of this page will show.

What are adhesions?

AdhesionWhen the body tries to repair the damage inevitably caused by surgery, scar tissue develops not only in the incision but also around it or from the cut tissue.  After PS surgery this means: around and spreading from the incision and the pylorus.  Adhesions can also grow between the inside of the abdominal wall and abdominal organs near the surgery’s work area (the bowels, liver, spleen, etc.).  This tissue can be as fine as plastic wrap or hard and fibrous like a web of string, in which case it is also inelastic and firm (like the skin surface of the scar).

Adhesions develop in more than an estimated 90% of people who have an invasive abdominal event such as surgery, injury, infection, radiation therapy, or a condition like endometriosis.  However, only a percentage of those with adhesions will be affected by pain or discomfort.  Most of us with them can be thankful that our adhesions are “just there”.

But this is far from true for everybody with a PS past.

Why won’t my doctor do anything about my adhesions problem?

What you read above really explains why doctors are reluctant to advise those of us who suffer with adhesions to get them removed: every time the body is opened it is likely that more adhesions will form from ever greater damaged areas.  There are ways of reducing the likelihood of adhesions forming, but prevention is better than a rather chancey remedy!

What can I do about adhesions?

Father compassion01eParents of a baby with PS should do their best to be good advocates for their baby, considering his or her long-term welfare and need for information about issues that they won’t be aware of.

Parents should also try to avoid surgery as the sexy “quick fix” for PS that most surgeons love, unfortunately without much care for the possible longer-term consequences.  There are less hazardous and less traumatic alternatives to the knife available – which only some doctors seem willing (or able, due to the rigidity of the usual training regime) to discuss and consider.

Mild cases of PS (where there is no weight loss) can be “toughed out” with or without the help of medication like Ranitidine which I have discussed elsewhere.

PS infants older than 3-4 weeks can also be treated medically – as they are in several non-English speaking but developed countries.  In these countries it is recognized that most babies recover without surgery, and those 10-25% that do not respond well enough to the medical therapy are sent to surgery; the mortality rate after PS is no different in these countries than in the Anglo-world!

Adults with a PS surgery past will probably begin to come across the word “adhesions” soon after they start having problems including –
– ongoing or intermittent abdominal discomfort, cramping or pain,
– what seems like gall bladder disease,
– bowel obstruction or blockages,  and sometimes even
– dyspareunia (painful intercourse) and infertility.

Adhesions can sometimes range far and wide from the pyloric (upper abdominal) region, especially if the surgery was rough and/or if the location of our internals is not textbook (as happens).  In my years of researching this subject area I have come across quite a number of people who had a healthy gall-bladder removed and were only then told their problem was caused by adhesions from their PS operation.

constipationIf you have any of these or a similar problem, insist that your doctor or specialist consider checking you for adhesions before you sign for anything major!  More surgery will usually make the discomfort and pain worse – although usually only after some more years have rolled by.  A few of my correspondents and friends have had adhesion surgery several times over a lifetime: this may well be the best course for some.

Several therapies other than surgery to break up or help live with adhesions have been mentioned on this blog, such as here, and here – and there are more on the web.  Most of these helps have been praised by some and found a waste of time and money by others.  One of my Facebook Friends wrote to me:
I used to belong to another group where they discussed in depth [a] physio clinic in the US and a lot of people felt they had been made worse with it.  It involves a lot of hours of intense therapy and the manipulations left them [with] worse pain and no relief from their adhesions.

Hmmm… “Taste and see”, if you have the need.

The hushed-up alternative to surgery for pyloric stenosis

Knowing myself and being open and honest about myself is very important to me, and to many others I know.  But sadly, some of my relations and friends are characterized by struggle and failure in this area.  And I never stop be surprised that IQ and education have nothing to do with how well somebody know themselves.

Know thyself1The same is true of the medical profession (and yes, the clergy).  I’d like to think that people who choose to work with and serve other people would be characterized by people skills including self-awareness. But no!

So we have excellent doctors, nurses, pastors and teachers – and those we quickly sense should be doing something else.

These thoughts were recently (30 October 2013) prompted by an article taken up by a local American online newsletter, the Spencer Daily dot com.  Under the title, Local Woman and Child featured in CAMC Article, the article encourages parents who are going through a rough time with a pyloric stenosis (PS) baby to consider the CAMC, the Charleston Area Medical Center.  The article is in fact a promotion for one of their pediatric surgeons, but it is nevertheless honest-to-life, perceptive and helpful.

Why did I like it?

1                    The article recognizes that so many parents with a PS baby are first surprised, and then progressively frustrated, angered, even outraged by the treatment they get from their medical doctor.  I have often posted about this (check the “Categories” at the upper right of this page).
The article sets out step by step the sorry tale too many parents experience – until finally their baby is seriously underweight, malnourished, dehydrated, and often it seems near death.
Only then does somebody think, “PS maybe?”, order some tests, and arrange for something effective to be done.

2                    The article acknowledges that it is far from unusual for parents to work out from the internet that their infant’s life-destroying condition may well be PS, well before their doctor does.  While this is understandable it is surely not the way a serious and fairly common infant condition should be diagnosed.  “He had every symptom – it just had to be it,” the mother said in exasperation.

3                    This doctor recognizes what a traumatic and unnecessary experience all this is for the parents of a newborn baby.

4                    Some of the complexities of operating on a tiny baby are well if very briefly explained.

5                    The doctor’s obvious love and care for babies and his dedication to his work are clear and to be commended.

There were also some things I did not like.

Surgeon011                    As so much on-line and face-to-face medical information does, the article promotes surgery as the only available answer to PS and links this with the excellent training the surgeon concerned had had in laparoscopic procedures on infants with this condition.  It rightly points out the benefits of a laparoscopic pyloromyotomy over the traditional open surgery procedure.  And whilst we can understand that surgeons would advocate surgery, why is the medical alternative so rarely even mentioned, let alone explained and offered?
Whilst the web gives us many stories from parents who are grateful for the immediate and often remarkable recoveries after PS surgery, there seem to me to be at least as many stories from parents and ex-patients who are struggling with the long-term effects of this infant surgery.  This unwanted, all-too-frequent and usually hushed up subject of complications would be largely cancelled by medical treatment.
The risks and long-term effects of treating PS medically with the drug Ranitidine are minimal, although the treatment takes longer than an hour in the OR!

2                    This doctor states that the scarring from a laparoscopic pyloromyotomy is minimal: “His [three] scars are smaller than one of his fingernails,” he stated.
What is not mentioned is that a baby’s fingernail grows many times larger during its next 20 years, as will the three scars.  Having three sunken adult fingernail-sized and usually deeply sunken scars is not “minimal” in the eyes of at least some people.  I have seen them.  As somebody observed, “It’s as if my belly has been hit by shrapnel!”

These are I believe sobering facts to consider before deciding to submit a baby to what is usually unnecessary surgery and why marking a baby for life should be avoided when it is not necessary to save its life.

This site includes many posts on everything a parent needs to know and realize before agreeing to PS surgery.  Just go the “Categories” box and you’ll find the information in a way that is easy-to-follow.

Pyloric Stenosis and avoiding the knife (2) – the choice is for parents!

The photos I included in my previous post show something of the emotions new parents feel and of the trauma they almost always express when they write online about their child having surgery at a very young age to remedy pyloric stenosis (“PS”), a condition that is horrifying enough in itself.

When your baby is born with a condition (or develops it so early) that leads to surgery, it is very deeply distressing: one feels extremely helpless, disappointed, guilty and a failure.  I have explained and explored this a little in the previous post.

Sadly, it is a sign of our times that it is hardly known in our culture today that PS is a condition that can in most cases be brought under control over a month or so with some careful medication, patient coaching, and “a little TLC”.

writer-thumbThe reason this has been lost sight of by most doctors is that it’s hardly mentioned and then summarily dismissed in most training institutions and among surgeons.  And most baby health-books and websites don’t even mention that there is usually a choice of treatment that is responsible and effective.  All that most parents hear is something like: Surgery is the simple and effective solution to PS, or, The rolled-gold treatment for PS is a quick and easy surgery.

What doctors do not mention is how traumatic it is for parents to have to hand over their new (and often first) baby to be cut open – and that after their little one has been vomiting its life away with great violence and irresistibly, as always happens with PS.

What doctors also do not or hardly mention is that although the surgical procedure (pyloromyotomy) is indeed quick and simple (surgeons love it as “the most elegant surgery there is”),

  • every surgery has risks,
  • working on a tiny baby’s insides understandably carries even greater hazards, and
  • the greatest risks are not immediate (perforation, infection and other wound complications, and incomplete splitting of the muscle).

Pain01Almost never mentioned is the considerable risk of various possible long-term and stubborn long-term effects –

  • abdominal adhesions,
  • effects on the gastric workings, some just weird and some utterly troublesome, and
  • emotional trauma of the baby or the parents’ trauma affecting the child.

Judging by the web chatter, these three areas of possible ongoing effects are far more common than the short-term risks, and almost impossible to remedy – and for that reason usually dismissed or stonewalled by doctors.  Because they are so common and hard to diagnose accurately and treat, very little statistical research has been done on them: they are just swept under the carpet – patients are typically pushed away or passed on to a different specialist: a paediatrician, a gastroenterologist, a physician, a dietician, or even a psychologist!

In June 2012 I wrote about 10 things for parents to consider if they suspect their baby has PS and they would like to try to avoid surgery.

In very brief, the medical treatment option is effective for between 60 and 90% of infant PS cases (reports on studies differ) when the baby is older than 3 weeks.  If medical treatment does not seem to be working, the baby is always able to have surgery: there have been no reported deaths of babies that were first given medical treatment.

Baby knowing1The best news of all (it seems to me) is that parents who try medical treatment as their first option know they have done the best thing for their little one.  If this option does fail, they not only have a “Plan B” but also know they have done the very best they can – for their child and for themselves!