Tag Archives: scar revision

Pyloric stenosis: long-term complications

Parents with a pyloric stenosis (“PS”) baby are always reassured by their paediatrician and surgeon, as they should be.  Although PS is usually a fatal condition, it can be brought under control with a small surgical procedure that is very safe, and although this operation sometimes leaves the baby with one or two immediate but treatable problems like reflux, there are no long-term effects.

Reassurances like this are the norm – but are they telling enough of the story?

“If only we had known…”

In fact, the “silent majority” of those who have had surgery for PS seem to have no or only minor complaints (usually a sensitive tummy).  However, PS and its operation are relatively common, between 1 and 5 in every 1,000 infants in most of the countries where this blog is read.  And so online there are countless complaints about significant challenges for babies, children and adults after this operation.

The “Categories” search box to the right of this page gives access to some of the data and stories I have found.

Here are two personal stories about how PS affected adult survivors.

Both are from women who shared their experience in 2013 on Real Self, a U.S. website that promotes cosmetic or reconstructive surgery after weight loss, malformation, accident or surgery.

The first story is from a woman who writes about two things with which she struggled: deep loathing and self-consciousness  about her scar, a common issue especially for many who had PS surgery before minimal access techniques became available after about 1990.

Hernias  were this woman’s second nightmare, most likely caused by the violent vomiting of PS, the surgery, a constitutionally weak abdominal wall, or all of these.

The good news is that after 60 years and many surgical repairs she is now very happy.  She posted her story on 1 April 2013 under the nom-de-plume Adreamcometrue.

Surgical scar after herniation or rupture (but not the writer's)

Surgical scar after herniation or rupture (but not the writer’s)

My tummy problems began when I was 22 days old, in 1950.  No that is not a misprint.  I was born two months premature.  At 20 days I began projectile vomiting.  After a couple of days a diagnosis was made: pyloric stenosis.  Surgery was performed.  That surgery left my midsection a mess.  As a child and teen I was cursed with a huge vertical scar surrounded by bulging flesh.  Nothing like being a teen and wearing a long line bra.  Body issues were definitely present.

My first reconstructive surgery to repair multiple hernias was in 1970.  There were other hernia surgeries in 1982, 2000, 2005, and 2007.  After the surgery in 2007 I was left with a huge bulge on the upper left quadrant of my ab region.  Three different docs told me I did not have another hernia.  Finally, as I was shopping for a gown for my daughter’s up-coming wedding,  I was becoming more and more discouraged.  Dresses in my usual size were not fitting.

In frustration, I went to Dr. Barach (a plastic surgeon).  He made an appointment with a[nother] surgeon.  They both felt I had another hernia.  So on March 22 the surgeon took care of a hernia and a wall tear next to it and Dr. B took care of the tummy tuck.  I am so thrilled.  The first time I saw my middle, 5 days post op, I cried.  I never thought my middle could look this way… I look great with my drains and swelling.

Based on the stories shared by others here, I can only imagine what I will look like 6 months from now.  I have been seen by my plastic surgeon two times since returning home and have another appointment this afternoon.  Keeping my fingers crossed that the drains will be removed.  Thank you to everyone who reports here.

This website has been very useful and comforting.  I am looking forward to returning to the gym and am continuing to eat healthy…. well… Easter doesn’t count… Does it?  Have a great day!

P.S… Insurance covered the hernia portion of surgery but not the plastic surgeon’s bill.  The use of the Operating Room was also pro-rated, and we had to pay $875 for that.

Some days later she continued –

I am now 13 days post-op.  On day 10 my drains were removed…

I hadn’t taken my own “before” pics.  I asked for a set, which they gave me.  Now I have to figure out how to scan them onto my computer so I can post them.  What a difference!  My pre-op size 6 jeans fit with no muffin top.  Yay!..

The plastic surgeon reminded me that my walking should not resemble exercise, when I complained that it took 15 minutes to walk about ¼ mile.  The plastic surgeon said I shouldn’t even consider using a treadmill for a 6 weeks.  I was in the gym 5 days a week prior to surgery.  Due to issues that make me easily develop hernias and tears, I can’t do CORE exercises.

 *          *          *

The second story is a powerful reminder of the real risk of complications long after PS surgery and also during and after any subsequent surgery.  These problems are often unexpected and possibly disastrous.  This woman prepared for cosmetic surgery full of both anticipation and fear.  She first posted on 1 Jan 2013 as “1hotway” and I have felt it helpful to add some comments.

First of all, I just want to thank all of you beautiful ladies for sharing your amazing stories.  This site has been a true godsend to me.  I am 38 years old with 3 beautiful boys … All of the damage to my tummy was done with my first born.  I was 20, so I never really got to enjoy my body.  I got terrible stretch marks, and needless to say a two piece was never worn again.  I have been at a pretty average weight my whole life. …

The writer's damage after carrying children and two surgeries

The writer’s damage after carrying children and two surgeries

When I was a baby I had a little stomach issue called Pyloric Stenosis.  It left about a 3″ scar on the upper right side of my abdomen.  I also had my gallbladder removed at the age of 21. [This quite often happens after the PS operation but the risk is it seems never mentioned. Ed.]  They unfortunately had to do the open surgery that left about a 7″ scar on my upper right abdomen.  Ugh!  Right?  I look like a road map!

I am sooooo ready for this. Thank goodness I have a wonderful hubby who loves me just the way I am.  One of the four plastic surgeons I saw for a consult said he didn’t think I was a good candidate for the TT [tummy tuck].  The other three said it would be fine.  Of course this makes me very nervous.  I don’t want to settle or compromise for my results.  It’s all or nothing…

A few days later she wrote –

I love looking at all of these amazing stories, but some of them aren’t so wonderful.  I guess it is good to read the good and the bad, but frankly it scares the heck out of me.  Necrosis???  [The death of tissue cut off from the blood supply by the old scar(s) and then plastic surgery. Ed.]  That is really scary stuff.  I have just read some terrifying reviews on that.  I can only PRAY that doesn’t happen to me.  One of the plastic surgeons I saw said that I am at a higher risk for this because of myprevious abdominal surgeries.  My plastic surgeon that is doing my TT isn’t concerned at all.  He is confident there shouldn’t be a problem since my surgeries were so long ago.  I am getting really nervous and excited.

2 February 2013

Paid in full. Got recliner. Pre-Op in a week. This girl is ready and nervous.

11 February 2013

Had my pre-op today.  BP was a little high.  Probably from reading & signing all of the consent forms.  Not exactly thrilled about reading all of the worst case scenarios.  Trying not to think about all the bad stuff that could happen is easier said than done right?  Any ways, got my prescriptions and doctor took my before pics.  I’m all set now.  Just have to wait for the big day…

18 Feb 2013

Well, I can’t believe it’s finally almost my turn.  I think I have everything all dialed in.  My husband is amazing.  He keeps telling me to just relax and breathe, he will take good care of me…  I wish I could just do that…

2 March 2013 – 6 days post-op

Started getting a strange pain in my right shoulder blade.  By day 7 it was traveling down the right side of my back.  It hurt to take a deep breath in.  I saw my plastic surgeon.  Had a drain removed and told him about the pain I was experiencing.  He assured me it was nothing.  4 hours later I drove myself to the ER because the pain was getting worse.  They ran labs, X-ray, and CT scan.  They confirmed Ihad a pulmonary embolism and admitted me to the hospital right away.  I now have been getting shots in my tummy to break up the clot.  I also have to be put on Coumadin for six months.  This has been the scariest thing in the world to me.  I should have never put myself at this kind of risk with 3 kids and a husband who need me.  I’m very lucky it was caught so early.  Many others aren’t so fortunate…

I’ve noticed that the risk is much greater than I thought.  This has been my biggest fear in getting this surgery.  I felt confident with all of the precautions that were taken during and after the surgery but clearly it wasn’t enough.  I tried to be mobile, I had a shot of heparin right before the surgery, they used the leg squeezers on me too.  Obviously it was just out of my control.  I will never have an elective surgery again.  The risk is just way to great…

4 April 2013

…I still won’t ever say it was worth it, considering all I have been through.  Just so happy to be alive and here with my amazing husband and beautiful boys.

12 Feb 2014

Hello, it has been almost a year since my TT.  I’m going to be honest. I probably wouldn’t go with Dr. H… if I could do it over again.  I think he is a little arrogant and I would definitely go with a doctor who takes every precaution they can.  I know that Pulmonary Embolisms are rare, but most people don’t live through them, so I would go with the safest route.  There really is no way of knowing if the clot came from my pelvis or one of my legs.  I tried to be mobile as often as I could, so just not sure.  I also have to say that I wasn’t impressed with how long it would take for the staff to respond to my messages…

*          *          *

Ugly scarring, herniation, adhesions blocking the gall-bladder, necrosis and other problems related to the scar, fear of the list of hazards we have to acknowledge before submitting to surgery, complications from the surgery…

The stories of just these two women (and the previous posts in this series) make me think I’ll keep encouraging those who can to try, even press for the medical treatment option for their PS baby before they sign a consent to surgery.

Scar revision by tattoo

There are times when a picture is worth a thousand words – or more!  And this subject surely asks for pictures even more strongly than my previous post on scar reduction surgery.

In a Comment on this previous post, Wendy stated (in my words) that she would not want any more tampering with her pyloric stenosis scar because of the complex feelings she has had about it all her life.  From my own journey after the same surgery I’m pretty sure I know just what she feels.  I want to explore this after time for more reflection.

And like Wendy I belong to today’s older generation, many of whom regard body art including tattooing in a very different way from much of our younger set.

However, I have been blown away by the creative and effective way in which some people have combined their surgical body scar with art, some to hide their scar and some to embellish it, even with humour, but always with the clear aim of reclaiming their abdomen as their own.  Why should the scar on my abdomen represent for the rest of my years the workplace (and all-too-often a rather unsightly one) of perhaps a long-ago surgeon who had little care for how I their patient would think and feel one day, or of my own body after it has gone somewhat berserk in dealing with the damage from a surgical assault, resulting in a collection of hideous keloid scars, troughs and pits?

For what it’s worth (and we are all so different), I have found that my own very limited efforts to modify my scar would be regarded by many as self-injuring, but they were also my attempt to claim some authority and ownership over what had happened to my body very early and without any of my involvement.  This may seem weird to some, perhaps – but it’s true.

As with scar-revision and reduction or “plastic” surgery, it is not hard to find websites advertising “scar tattoos” or “tattooing over scars”.  Here are five of the best results I found from a limited search; click on the image to enlarge it.

Cobertura cicatriz Elaine - Flickr EspScar w tattoo covering01

Scar w tattoo surround01Soobie - midliner w cherry-tattooScar revision tattoo01

Scar reduction surgery

Almost a year ago I posted about scar reduction after infant surgery.  I won’t repeat what I wrote then, so if you are really interested in this subject, please click on the link and read that introductory material first: this post adds to it.

Many young and middle aged people are considering having their less-than-attractive scar from infant surgery revised.  Many others who have had infant surgery don’t care about their scar and know little about what caused it, they may even flaunt it with smart humour and even cleverer legends, or they just want to “move on”.  Somebody whose first pyloric stenosis (PS) surgery failed to relieve the obstruction and thus lives with two scars (considerately placed at 90° from each other) wrote recently:

i never had a problem, in fact the reverse.  my scars have always been there so nothing to be ashamed about. some people have glasses, some are bald, that’s me as well, lots of people have far more difficult socially handicapping problems.  accept your scar as a badge of survival and move on. 

Blessed are the extroverts and those whose infant illness is past and forgotten and whose surgical scars are overlooked – neither of them affecting them in any way.

However, not everybody is in that blissful condition!  And these folk are simply too numerous, their emotions too complex and deep-seated, and their well-being is too compromised for them to be brushed off.

This blogsite and that of a fellow blogger are dedicated to giving information, advice, resources, and encouragement to these people, with the message:  “we are not freaks, we are not alone, and healing is quite possible”.

Many may not be able to afford the cost of scar revision, but it seems that in many countries with health insurance this kind of surgery can be covered.  It’s certainly worth asking around and trying.

Even then, scar revision is not for everybody.

  • Some, having experienced past surgery’s effects on them, will not want it again for a non-life-threatening matter.
  • Others have to be told that scar revision surgery would be inadvisable, for any of several technical / anatomical reasons.
  • For others again, there is little or nothing to be gained in cosmetic terms: a surgical scar can only be removed or improved by creating another scar.

Abdominal scars that have become sunken, indented or that sprawl over a large area can often be revised with the most benefit, and when this surgery is done on someone with loose or excess skin (after several pregnancies or weight reduction like gastric banding surgery), there is much skin and tissue that can be removed with great cosmetic benefits: many scars can be cut out, greatly reduced in size, and often even moved far enough downward to be hidden from public view.  Sunken scars can often be separated from underlying tissue and smoothed, and the abdomen can be made taut and more even.

It has been found that whilst most upper and lower midline scars often respond well to revision surgery, but those under the ribcage (from a sub-costal or Kocher’s incision which was often used in the past for PS and gallbladder surgery) can be difficult to work on, as they have often developed adhesions binding them to underlying muscle and abdominal structures.

Those very interested in this surgery should visit several scar revision websites, of which RealSelf seems to be the largest, and there are many more.  Use the Search box for the kind of surgery and scar you’d like to know more about.  You can learn much from these sites’ questions and specialists’ answers, and from the “before and after” photo albums.

With this post I include several “before and after” photos of scar revisions shown in web advertising.  I am grateful to the people and websites who make this material freely available.  They illustrate something of what can and cannot be expected of scar revision surgery.  I have posted the photos in a small format – click on them for more detail, and feel free to ask for links to the related websites.

If you are interested in this kind of surgery, be reminded that –

  • it may not result in a major improvement of your scarring;
  • not all scars can be much improved and none can be totally erased;
  • how a scar heals is critical: good care can result in better healing, but this can never be totally controlled;
  • surgeons differ greatly on what is advisable and possible – so don’t let one closed door deter you, weigh up what you are told, and if necessary shop around;
  • the finest scar revision is usually done by plastic surgeons, so ask about your surgeon’s background and check out a good range of photos of his or her work.

Appendectomy02c b4 & after RealSelfDoctor’s Note: The left image is of a 26 year old female with an ugly indented appendectomy scar from her childhood.  The second photo was taken 2 months after scar revision surgery and this scar should continue to improve with time and scar management.

Belly13c-after PSBelly13c-before PSThese images show a woman’s gall bladder removal scar before and after revision surgery after weight reduction.  In removing tissue the scar is lowered and smoothed but not reduced, and her navel has been reconstructed.

Transverse01-frontA transverse scar that has become sunken can be much improved but without a tummy tuck it’s not out of sight.  A tummy tuck requires excess skin and underlying fat that can be removed, drawing this scar closer to the pubic region.

MidlineUpper02 after

MidlineUpper02 beforeThis vertical midline scar had spread and become sunken and it is marked for removal.  The plastic surgeon has taken great care to replace it with a much tidier and thinner scar-line and will be please it has healed well.

Check01 beforeCheck01 afterThe scars left by the repair of some of the major congenital abdominal conditions of infancy can often be significantly improved in later life. Here the scars from drainage tubes have been removed as well as the old-style “railway line” scar. Again, there was no tummy tuck.

PoustiPS01b afterPoustiPS01a beforeThis 33 year old mother of 4 has a history of bowel problems and surgery which left her with a large scar, ruptured (herniated) abdominal muscles and no umbilicus. Her repairs are detailed here. She had scar revision, abdominal wall repairs, abdominoplasty (a tummy tuck)… and is understandably enthusiastic about the result.

Help when it’s needed (2) – How parents can help

It should not surprise us that parents will either help or hinder their child coming to terms with their surgery and/or their obvious imperfection as a baby.

As mentioned in the previous post, my parents fell sadly and badly short in this regard, both by sins of commission and omission.  I say this not to diminish the love, affection and deep respect I have always had for my Mum and Dad, but to underline the importance of this post.  What’s more, my parents were far from alone in their failure to help me understand and accept myself: the parents of several of the people with whom I have corresponded in recent years had similar problems with similar effects.  I’m quite sure these parents did not realize they were adding to their child’s trauma – let alone intending this.

On the other hand, other infant surgery survivors with whom I’ve also had contact deeply value what their parents did to help them, and they show the effect of this.

So there’s much we can learn about the vital role of the parents of scarred children scarred by an accident or early surgery.  Everything I have written is commonsense and (sad to say) based on what others and I have actually experienced.

The Basic principle:  Respect your child

This should be obvious but often it’s apparently not.

Take the initiative: As soon as your child shows they are becoming conscious of their disability, disfigurement, or scarring, take the time and create the opportunity to talk with your child.  Continue to do this from time to time to help your child build their understanding and to monitor their emotional development.  But be age-aware and don’t overwhelm a young child with information beyond what they can handle.
I have been amazed by the number of people whose web comments tell us they do not know the cause of their surgical scar; the scar’s appearance and sometimes a sketchy story they were given helps us to suggest the probably reason for their surgery.  Surely, all of us should know important details of our life story!

Take your child’s questions seriously, so build their confidence in you by taking time immediately to answer their questions as fully as you can, or promise to do so later if their questions catch you unprepared or at an unsuitable time.

Put yourself in your child’s place, so
never make light of your child’s story or feelings,
don’t exaggerate or dramatize (with lurid “funny” stories) what happened,
be frank, truthful and factual,
make sure you don’t let your own feelings dominate your memories of what you tell your child; and
never talk about your child’s issues publicly, let alone to “amuse” and adult audience.

Make yourself a little more vulnerable by asking your child, Have I answered your questions?  Is there anything else you’d like to know?  Allow your child to decide of how much you tell them: it will build their confidence and trust.

Keep whatever you can to help your child embrace the reality of their disfigurement at birth, and/or what happened when they had their lifesaving or disfigurement-reducing surgery.  Make photos before and after, keep their medical records, your notes, diary or journaling entries, and anything else that may be of value or interest later.  Allow your child to choose to value, reject or discard such keepsakes.

Help your child address their passive role.  Their having no say in their having surgery and their total non-involvement and ignorance of it will often have damaging results.  Because infant surgery is lifesaving and all-too-often urgent and sometimes careless, and its disfiguring damage is magnified by the child’s growth, it can also leave sensitive people with complex feelings of resentment towards the medical profession and /or their parents.  Disfigurement and disability evoke many of these emotions also.  Such damaged children need much support to overcome their understandable lack of self-confidence, passivity, or victim mentality, and to accept their story with their mind, heart and emotions.

Since writing this blog, I came across a more recent post by Danelle Townsend in which she illustrates (to my thinking) a beautiful and seamless blend of Christian faith, a mother’s love, openness and sensitivity, and the nurture her son would need.

Svea Vikander is a Toronto-based writer, artist and photographer.  Take a look at her work, Life Lines.  In an interview reported in this introductory blog, she spells out for us the key to her wonderfully positive attitude to her abdominal scar from early surgery:

I think that the lines in our palms are just like the any other scars or lines on our bodies that tell stories about ourselves.  The story about the large scar on my stomach began when I was only three months old.  I had problems with my stomach and had to be rushed to hospital.  I almost died but I survived the surgery.  From then onwards, if I ever wanted to be reassured of love, I would ask my mother about the operation and she would tell the story of how she almost lost her first born child.  The scar reminds me of how special I am to my parents and how lucky I am to be alive.

Trauma and healing

How can something I cannot remember and of which I know so little affect me deeply throughout my life, right to the present day?

Regular readers will recall that I had surgery for infant pyloric stenosis in 1945, and that I am not alone in this still disturbing my inner life.

From time to time I return to the 10 questions Dr Louis Tinnin asked in a blog posted late 2010.  As an academic and practising psychiatrist he uses these questions to help people assess whether they have been traumatised by early infant surgery at a time when medical thinking and practice was primitive by today’s standards and when many of those working in that field believed that “babies don’t feel or remember pain”.  It’s not hard to imagine what that meant for medical training and practice.

The internet has enabled people like me who can tick Dr Tinnin’s boxes to be reassured that we are not crazy or mere attention seekers, and to lend support to and draw it from others who have lived with the same mysterious link between their preconscious and their everyday life.

The surgery I had during my first weeks after birth was technically well done.  Although my parents would not talk about it, as far as I am aware there were none of the complications that occur so easily after any surgery.  Much can and does sometimes go wrong when a tiny baby is opened up, has its internals worked on, is repaired, and has to recover.  In my case there was no infection or undue bleeding, the procedure to bring my stomach exit muscle under control was effective at the first attempt, the wound did not rupture but healed quite tidily considering then current technique, and no hernia developed in one the most problem-prone parts of my abdominal wall.

Many people have had no ongoing effects after having the same operation in their early life.  Yet I and others have found it has affected them throughout life, albeit below the surface.  Most people who know me, have interacted or worked with me, and benefitted from my work have never noticed anything of my private pain.

What do I mean by “private pain” then?

Dr Tinnin writes that “adult survivors report life-long symptoms of anxiety (constant nervousness and spells of terror or panic), hostility (temper outbursts and urges to smash or break things), depression, self-consciousness, distrust of others, and a high vulnerability to stress.”  The many symptoms of post traumatic stress disorder (PTSD) include these, but much more; the symptoms of early surgery survivors are usually both broader and milder than those of PTSD which arises from trauma in conscious life.

I should add to Dr Tinnin’s list obsessiveness, a symptom which (judging by contact with other survivors) seems to be quite common.  For me this obsessiveness has had various forms.

As a child I always wanted to play “doctors”, with myself as the patient.  Throughout my life I have had an inordinate level of interest in the scar left by my surgery, whilst other “survivors” report almost forgetting theirs, just as I rarely think of my other scars.  All my life I have sought out books and articles on pyloric stenosis and many of the details of surgery.  Another lifelong obsession has been looking for “scar siblings” whenever I’m at the pool or beach, or whenever I see an image of somebody with a bare midriff!  And I often notice objects or patterns similar to the scar on my belly.  I’m so often aware of my scar in various ways.  Not unexpectedly I hate all this obsessive preoccupation; I have tried in vain to put it away, to “move on”; I wish I could wipe it from my mind.  Time has healed nothing here.

However, my life stage is now that of “convergence”: I have found it true that in many ways my life is truly “coming together”.  During the past 10 – 15 years I have recognised and come to enjoy the benefits of becoming “a senior”: the rich treasure of knowledge and experience, life lessons and self-knowledge.  These enable me to live and work with a lot more wisdom, tranquillity (and warm fuzzies) than ever before!

As part of this ripening, I have come to regard my early surgery in terms of a sacrament rather than merely a scar.  I define a sacrament as a God-given picture and pledge of the good things for which I thank God.  In some ways more than most people, I was born imperfect, and my repair marked me for life.  But I don’t regret being a survivor, and am deeply grateful that I was given life whereas 30 years earlier I would probably have died.

There are several vexing questions about all this which I want to explore in my next blogs.

However, these questions do not alter for me the fact that my front-and-centre scar which used to discomfit me so terribly and absurdly has now become an inevitable part of a sacrament.

Scar revision after infant surgery

A young adult recently posted this question to a web forum:

I am 24/F and I was wondering if anyone has had reconstructive or cosmetic surgery to repair the scar from having pyloric stenosis as a baby?

And this is the reply she got from the forum doctor:

arrogant doc4No, and I referred many infants to pediatric surgeons for this.  I must confess that even 24 years ago the incision to repair this was quite small, and the scar hardly noticeable.  You must be a very rare exception to have a scar so prominent that you want it revised.

Having had the same surgery as a baby and read the online blogs and comments of hundreds of others who have also grown up with a prominent scar they didn’t like, I certainly had no difficulty identifying with the questioner and what must have prompted her inquiry.

I was (frankly) rather unhappy with this off-handed and cold response.  I have encountered its like before, and tried in vain several times to post a Comment of my own to exchanges on the Forum site where I read the above.  Some medical pros can be “Great Gatekeepers”!

What is it about pyloric stenosis (PS) surgery that makes some of its “survivors” want to ask about corrective or cosmetic surgery?

And why is it that some medical workers are so dismissive about somebody asking an honest and clearly heartfelt question?

Cosmetic surgery for what?

Some who have had infant surgery are badly done by despite the fact that they and their parents were saved from a tragic and traumatic death.

110908 sick bub1I won’t detail here that so many parents still in these “advanced” times complain about being fobbed off by their doctor as being incompetent nursing mothers or fussing parents – only to be told a few days or weeks later that their baby was saved by surgery only just in time, at the very door of death.

Nor will I explore now the complaint by a very few parents that their surgeon was not careful enough, or that some surgeons tell their patients their job is to save life, not to do cosmetic surgery.

The fact is that judging by recent blogs, website comments and photos, even today (let alone 25 years ago), some infant surgery for at least PS (and no doubt for other conditions as well) was not skilfully done.

We must also remember that like a newborn baby, every scar takes on a life of its own: it may be affected by infections, suture and skin ruptures, and hernias that sometimes develop immediately.  Some scars develop in unsightly ways because of poor or unfortunate wound repair, adhesions under the wound, and later weight gain (for which we must take at least some responsibility).  All this is not the surgeon’s doing.

Let me just convey the reflective feelings of at least some of the many little infant surgery patients.

We grew up literally marked for life by something of which we have no memory, about which we could not be consulted, which deeply affected our developing self-image, and which was all too often never adequately explained to us.  At least some of us were sub-consciously affected for life by trauma: by too many days or weeks of starvation that had a lasting effect on our development, by infant surgery that by current standards was crude, quite possibly performed without good anesthesia, and involved long separation from our parents (including nursing).  During childhood and adolescence especially, some of us are (or were) very sensitive and self-conscious about our bodies, and many parents (like mine) had no idea about how to manage this as well as they could; some parents added to rather than reduced the damage done to their children.

Personal example and confession

150414-085It may surprise some readers that although my PS scar is about as tidy as it could be considering 1945 techniques, I spent years trying to modify and improve its appearance.  I realize even more today than I did at the time that my efforts were also in part self-discovery, a coming to “own” my surgery, and to a degree some frustrated or angry self-harming.

Some PS survivors who have had other surgery later in life have commented online that the scarring from the later surgery does not bother them but the scar from their infant surgery does. I identify with this and find it telling. First, as explained above I was not an aware participant in my infant surgery. Second, because my scar is front and centre (not, say, on my back or feet) and I am a sensitive soul, it got caught up with my self-image and self-confidence.

I’d like to think that my parents could have helped me to unravel these issues as others have, but seeing one or two of my family struggle with their own sensitivities, I also grant the job may have been too much for my folks even if they had tried!  So it took me years to work through this area alone. The advent of the web has been a huge breakthrough – swapping stories and images has broken down the feeling of “being different”.

Several of my co-PS-survivor correspondence friends have felt the need and had the funds to have corrective surgery.  I wonder if they were aware of similar undercurrents, or have identified them since?  And I wonder how many doctors have never come across such people as their patients?

So why dismiss a patient’s heartfelt question about cosmetic surgery?

Having interacted with people all my working life, I am quite aware that I don’t always “read” people with as much awareness, sensitivity and wisdom as I should.  Whenever I am aware that this has happened, I go through yet another personal or wider review process.  I want to learn.  We all do.

Might these comments I have gleaned from the web explain the thinking of the well-meaning doctor I quoted earlier?

  1. Professional ignorance 1“My work is to save lives, not to cater to patients’ narcissism.”
  2. “I am a general (or pediatric) surgeon, not a plastic or cosmetic surgeon.”
  3. “People should “get a life”, “move on” and be grateful for the scar that is part of their survival.”
  4. “PS surgery is really minor compared with many other conditions which need infant surgery.  The same is true of the scar, even if it’s not pretty.”

Having written this blog, let me add that it seems that many people who have had PS or other infant surgery are able to ignore or forget they have had it.  They tell us they have not been affected by the trauma that can and does accompany early surgery for some of us.  They would also have a more confident and extroverted nature and/or have profited from excellent parenting that has helped them to understand, accept, embrace and even feel pride about their story and its “lifeline”.

My word to people who would like to know whether scar revision is a good idea for them?

  • Damage from surgery cannot be totally eliminated, and in many cases these scars are hard to improve upon.
  • In cases where weight reduction is a factor, many abdominal scars can be removed together with other excess tissue, and the scar from this surgery can indeed look better than the present appearance. It can often be well hidden at the lower part of the abdomen.
  • When the scar from the incision has widened due to poor healing or when it is has become sunken, it can often be improved by good cosmetic surgery.
  • Keloid scarring is usually better left alone.
  • Before you consult a doctor, do your homework: read, discuss, interact and perhaps message others who have had scar reduction done.  Facebook and websites like MedHelp and Topix have many comments of good value.  Contact me if you cannot find these.
  • If your doctor or specialist dismisses your request or inquiry without giving satisfying answers to your informed questions, consider getting a second opinion, or just look for a better doctor.

If you have questions, stories or comments on this subject, please post and discuss them here or at one of the other addresses I have mentioned.  This is not an issue for everyone, but it is for some and it’s worth airing.