Adhesions (5): unhappy ties that bind

Adhesions are one of the most feared after effects of abdominal surgery, although we can be thankful that serious problems with them are relatively rare.  Last year I posted several times (between February 18 and June 23 2011) about various aspects of post-surgery adhesions: you can find these posts by searching this site for “adhesions” or by starting at this link.

What are adhesions?

Adhesions are fibrous bands that form between tissues and organs, often as a result of injury during surgery.  They may be thought of as internal scar tissue that connects tissues not normally connected.  (Wikipedia)  Almost all abdominal and often other surgery results in adhesions forming, but it is fairly unusual for them to bother us.

Because this subject remains one of the top subjects that brings readers to this blogsite, and as it is one of the most common causes of grief after infant pyloric stenosis (“PS”) surgery in particular, I return to it here.  Read some of the different ways people have been troubled by adhesions, as registered on the web.

“He is 9 years old”

My son had PS surgery when he was 2 weeks old.  He is 9 years old now and his scar is tucked way in and he complains of pain and pulling.  I took him to pediatrician and she referred him to pediatric surgeon.  The surgeon knew exactly what was wrong, he had a hernia and tearing from the pulling of the scar because it was attached to his abdominal wall and as his belly grew it got worse and pulled more, and also the scar tissue prevented his ab muscles from growing together.  He just had surgery on Tuesday… and they detached the scar from the ab wall, repaired the hernia, and attached the muscles as they are supposed to be.

The surgery went well, but recovery is pretty tough.  He stayed overnight at hospital and we came home the next evening.  He is in a lot of pain and has a hard time even walking to the bathroom.  I know it will take some time to heal and feel better, but he is going to have a better quality of life now without scar pain.

If you have insurance this procedure is usually covered because it is a health concern and NOT for cosmetic reasons.  So a pediatric surgery is the best way to go and not a plastic surgeon. 

The incision now sits flat on the tummy and isn’t tucked way in.

“It shrinks and hurts like hell”

I was a first child and had PS as well.  Doctors always looked at me funny when I told them that.  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…

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.

“I have always had … intestinal distress”

I am 45 years old and had surgery for PS at about two weeks old.  The reason I went looking for more info on PS online is that I have always had what I call intestinal distress and wonder if that is common.  The only other complication I have had is 5 years ago when I had emergency gall bladder surgery.  I had so much scar tissue that my gall bladder, bile ducts, etc. were basically cemented together which made the surgery last much longer than anticipated.

 “Thinking I had a gall bladder attack”

I am 42 and my whole life had digestive problems.  I am male, and had the pyloric stenosis operation a few days old.  Only just this week, after thinking I had a gall bladder attack did I finally – after decades of basically being told I am crazy whenever I went in for stomach pain – did a doctor tell me I might have adhesions.  I was actually in the hospital thinking I had a gall bladder attack, but when I explained to the doctor that as long as I remember I have had pains under the scar from the surgery and throughout my intestines… worsening as I got older – did it seem to click.  Still have to see more specialists and determine things… but it is great to finally perhaps have an answer.

“You have developed some major adhesions”

I’m a bit worried about a scar on my stomach.  When I was a baby (I’m 21 now) my stomach was operated on (pyloric stenosis) and so I have a scar about 5 cm long to the side and above my navel.

Whenever I press on the scar it really hurts.  It also feels very hard under the scar and around it, it also feels lumpy and sometimes I get stabbing pains.

Is this something I should look into, or is it normal?

Reply 1  –

My advice is to use a gentle cream and to massage slowly; after some time you won’t feel anything any more and the scar will become quite nice.

Reply 2  –

It is very well possible that you have developed some major adhesions to the inside wall of your belly.  As a result the tissue which is normally more or less flexible inside the abdomen has now been ties to that wall.  That’s what you are feeling when you press in.

If you’ve got more problems than just these I’d advise you to ask your GP /MD to have a look and feel.  A physical check will I trust set your mind at ease.

“Not being taken seriously”

My son who is now 18 was operated on for pyloric stenosis when he was 2 weeks old.

Now his scar regularly bothers him: it feels very tight and makes him feel unwell, even giving him nausea.

We have already been to the MD/GP a couple of times but get the feeling that his problems are not being taken seriously.

“I will eventually need another surgery”

My scar is also about 4 inches across and on the right side right under my diaphragm.  I have been told that the surgery was supposed to be a permanent fix but that also as I age and develop more scar tissue, I will eventually need another surgery to remove scar tissue and release the muscle and fat that has grown on top of and on the scar.  I also tend to have spasms and a pulling sensation sometimes during/ after exercise, eating, or just randomly.  Mine is not an intense pain at all though: just kind of a weird feeling.  Whenever I get the stomach flu or drink a little too much I tend to have trouble ending the vomiting unless I take phenigran or another anti- nausea medication.  I also have irritable bowel syndrome so I wonder if there’s any correlation there?

“11 years and has intense scar pain”

My son had PS at 6 weeks, and had 2 surgeries after that (6 mo, 9 mo).  Doctor thought he had a hernia at the site, but it turned out to be excessive scar tissue – both times.  He’s now 11 years and has intense scar pain when the site is touched (even brushed) described as an “ice pick”.  And yes, he tends to get stomach flu-like symptoms very often.  Has anyone looked for treatment for the pain that worked, but would be endurable – deep massage would not be an option I think.

“I went to a doctor”

I have the scar on my right side as well.  I’m also unable to do any major ab workout without tears due to the scar.  I went to a doctor and he kind of brushed it off and said there was nothing he could do.

Although I have avoided identification of the sources, web references are available on request.

These are just a very small sample of the complaints and experiences people have published online.  And no doubt they are just the tip of an iceberg.  I am certain that like me, everyone who is alive today due to PS or other surgery is grateful their life was saved and for safe and effective medical skills – as is every parent whose child has been saved from an agonising death by starvation.

In publishing these Comments, I want to –

(1) help inform and reassure those affected by continuing post-surgical discomfort or distress that they are far from alone, and that given the right doctor or therapy, help (or at least some relief) is available;

(2) remind interested readers again that routine PS surgery is not without real and sometimes significant consequences; and

(3) raise the awareness of the alternative of medical therapy which is possible for the majority of PS babies – provided the condition is identified in time and the medical people concerned are not closed to this option (see the posts on “medical treatment” on this and other sites).

In one of my next posts I would like to relate the story of somebody whose struggle with adhesions after PS surgery has continued through their life and several surgical interventions to manage the effects.

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6 thoughts on “Adhesions (5): unhappy ties that bind

  1. Wendy

    Very powerful testimonies here. I am so glad that you are sharing this information about adhesions and letting people know that there is a possible alternative to surgery for pyloric stenosis.

    Reply
  2. Fred Vanderbom Post author

    I trust that this litany of adhesion woes will help make it clearer to doctors and parents that treating infant pyloric stenosis by surgery is not necessarily a quick fix. While the old “open surgery” was and still is an invitation to the development of adhesions, From what I have read, I wonder whether the “burrowing” and gas inflation that come with the current minimal access umbilical and laparoscopic surgery techniques may also do damage with long-term consequences that will be spoken of as “unforeseen” in years to come.

    Reply
  3. tg

    The evils of infant surgery completely shaped my life, and I’m not even talking about abdominal adhesions. It was supposed to be a mid-line cut, but the surgeon deviated from the linea alba and damaged the nerves of the abdominal wall on one side. As that segment of the abdominal muscle was deactivated and the surrounding tissue tightened around that crucial area to protect it, EVERY OTHER MUSCLE IN THE BODY ADAPTED, and the result was a complete disaster. Of course, there was no mentioning of it, or any rehabilitation.

    Subsequent surgery (that probably would have not been needed without the first one) only made things worse, and, again, doctors never bothered to notice how tight and misaligned the muscles were, or to offer any instructions regarding postoperative care.
    Starting in childhood, there’s been a multitude of health issues that, as I would eventually learn, were all related to the way my body responded to those surgeries. However, doctors never found a cause or even looked for one, as they were happy to manage the symptoms somewhat.

    The funniest of all: my infant surgery was not only poorly executed, but also unnecessary. After they did the cuts, they realized it was not what they thought, so there was no other intervention.

    Reply
  4. Fred Vanderbom Post author

    Thanks for sharing your experience of infant surgery. If you don’t mind continuing, what caused it and how should it have been managed?
    Your story is tragic and I hope that understanding your present symptoms you can do something yourself to remedy it.
    I have come across many others who complain about doctors and surgeons giving scant regards to their condition or what their parents said, instead patronizing them, fobbing them off or persisting with their own ideas about what their problem was – until the situation became critical or more complex to manage.

    Reply
  5. tg

    Hi Fred,

    Although I wouldn’t say I wish I had never found the cause of all the issues I had growing up (which eventually led me to where I am today – not a happy place..), the revelation is difficult to deal with on so many levels !

    If your inquiry refers to the diagnosis that led to surgery, I’m not quite sure what they thought I had. However, I was diagnosed at one clinic, then taken to a different city for the surgery. After they performed the operation and found nothing, the conclusion was that the ride in the ambulance had fixed the issue. Why the team at the hospital where the procedure was performed never checked my condition before opting for major surgery on a 12 day old, that I don’t know.

    If you’re asking about the many problems that procedure caused me, I don’t mind sharing that either, although the list is pretty long. As for how it should have been managed, that’s the really upsetting part. First of all, the surgery was performed over 20 years ago, as an emergency, on a very small body – I blame the poor quality of the cut on that. However, the doctor obviously must have realized that he had done serious damage to the abdominal muscles, yet chose to ignore it. For the record, from the research I’ve done, it seems that surgeons continue to dismiss such ‘minor’ issues today. It really doesn’t take advanced degrees in medicine to understand that damage to the complex core musculature that keeps the body together and is involved in everything, from breathing to moving your hand, will have significant consequences (more so when the patient is an infant, who doesn’t know what normal body alignment is, and will simply take for normal what they have), and yet treating the human body like a resealable can of sardines continues to be the norm.

    Next, it’s worth mentioning how all gym teachers and other people responsible for addressing just such issues failed to notice how poor my alignment and movement patterns were. Basically, the body adapted to the such a degree that the simplest movements were made very complex and performed by different muscles than normal; as for how efficient that was, imagine a car held together by duct tape. Back to the health professionals, another surgery (a few years later) made everything exponentially worse. Again, the various doctors failed to notice what would have been quite obvious to someone looking at the big picture, with a bit of common sense.

    The latest of those were an asthma specialist who never found it alarming that I was taking small, rapid breaths into my upper back, dentists who didn’t link my complaints of dry mouth to the fact that I was breathing through the mouth (not by choice), and an ENT guy who ignored how severely constricted the passages in my throat were, and instead diagnosed acid reflux (clearly a symptom of some deeper issue he wouldn’t bother investigating), prescribed Prilosec, and then insisted it had solved the problem when I assured him it didn’t do a thing.

    I know I sound pretty upset about the whole thing, but to think how different everything could have been without that surgery or with some sort of intervention along the way (to realign the body and activate the muscles) is not easy. Of course, no one cares today to hear what happened over 20 years ago, and yet that one event radically changed everything for me, slowly destroying me from the inside out. So much for the people insisting that “you make your own life” .

    The take-home message here is that you never know what others are dealing with. For most of my life, I didn’t even know myself what I was dealing with.

    Reply
  6. Fred Vanderbom Post author

    Thank you, TG, for adding in some of the details of your first surgery, what you have been through since then, and what you have done to try to remedy the damage. I can imagine that your confidence in the medical world has been shattered, and that you’d lack any thoughts of continuing to look for help. It’s a sad indictment that none of the specialist people you have consulted was willing to take time with you and advocate for you so that you could get the attention and support you clearly need.
    On behalf of our readers I say, our thoughts, prayers and best wishes are with you. The medical professions have done and can do much to improve our quality and length of life, but, alas, few seem to care about those who are written off by most as “collaterally damaged”. Finding those few is all too often like looking for a needle in a haystack.
    Please let us know here if there are any further developments you need or would like to share.

    Reply

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