torsdag 3 augusti 2023

Damage from nose surgery and why it´s underdiagnosed

One of the most common surgery’s that are done is nose surgeries, today they are so common that people often forget about how much nasal injure and complications they can cause. If looking into the nasal post-surgery groups at Facebook it is also obvious that many surgeons completely neglect to inform the patients about how the nose function and what possible complications of surgery there might be. Sure, many may mention bleeding and infection, but that’s just short-term complications. The long term complications with Atrophic Rhinitis and Empty nose syndrome, nerve pain and severe dryness is just something that many surgeons will never mention. Many stories also shows that people asked for one type of surgery but ended up having one or several other surgeries they never signed up for. I have read several story’s where people all over the world signed up just for a septum surgery but came out the other end with a total amputation of the inferior turbinate’s, causing then lifelong dryness, infections and suffocation.

In this blogpost I will go thru why complications from nose surgeries is underdiagnosed and hidden away from patients interested in having a nasal surgery. I hope you get a good read and learn something that can save your own life or someone else’s. And sorry English is not my first language so you will have to live with some misspelling etc.

Before you continue to read I recommend you to look at theese videos to thoroughly understand what nasal surgery can cause.

This is is why damage from nose surgery is underdiagnosed
Based on my own experience and other patients I have been talking to there is no follow up on turbinate and septum surgery. In my case I only got 2 documents in the year following the surgery where only 1 question was asked. Do you still have nasal congestion? And this is in Western Europe – Sweden, witch is considered to have good documentation and healthcare. If no follow up on complications was done here, how much follow-up would can we assume that they do in developing countries? When no follow-up is done it’s impossible to get good and true data on how many patients who get complications from nose surgeries!

2 in many cases Empty nose syndrome (ENS) or secondary Atrophic Rhinitis takes years to develop after surgery. Why is this? Because it’s not only about what’s taken out but what’s left behind. When you first do the surgery you start up with a healthy mucosa membrane and it takes a while for the cells to go into metaplasia/Cellular adaption. When aggressive turbinate surgery is done the following happens:

- The nose gets to open and that dries out the whole mucosa, every time the nose gets really dry there will be some damage to the epithelial cells.

- When aggressive turbinate surgery is done the nasal cycle will cease to function, this could be due to nerve damage but most likely to the over opened nose. Even if the nasal cycle still remains the heavily resected turbinate’s can no longer swell much enough to obstruct each nostril vice versa. When this never happens, none of the nostrils will ever get a chance to moist and repair itself like the nasal cycle is designed for. In the long run this to will to damage the mucosa.

- Since cells that secrete immune modulating substances are damaged or removed by the surgery, the remaining part of the nasal mucosa is perfectly set up for bacterial adhesion and following inflammation that further can damage the mucosa. Furthermore when cells are damaged by surgery or literally cut out, the individual also loses a great number of the mucus producing goblet cells with will lead to dryness. When this happens during prolonged periods the remaining mucus producing goblet cells will also get damaged where their ability to produce mucus will be reduced. The Atrophic process then continues by itself in a negative spiral where the more and more function of the nose is lost every year... Also it’s important to understand that it’s the anterior part of the turbinate, the turbinate head, that is most active, this part of the nose has the highest number of mucus producing goblet cells per square centimeter. If this part is lost during surgery its extra seriously. And just for let you know, it’s often surgeons remove this part of the turbinate’s completely.
This things mentioned above is an explanation to why Empty nose syndrome and Secondary atrophic rhinitis is often is delayed several years after the surgery. After prolonged exposure to dryness and to infections the mucosa finally gets into a metaplasia stage where the ciliated cells and the goblet cells change from one type of cell to another. The new cells that develops loses their old function and is replaced by cells that have more in common with skin cells than with epithelial mucosa membrane cells. This is when the Secondary atrophic rhinitis is developed and that can take years, especially for those who live in a humid forgiving climate.

Metaplasia or adaptive cell response is something the body is forced into when it feels that it’s under too much cellular stress. For example this is observed in smokers. The ciliated cells in the throat can no longer handle the excessive volume of smoke and as a survival method they is forced to change from one cell type to another. This will make the cells to survive, and that’s good. But but it doesn’t comes for free since the original function of the cells is lost with discomfort and problems for the individual.

3 Further more, patients is not informed about what the turbinate’s are and what they do. Patients will not get the information that most land living mammals have developed turbinate’s for millions of years to help them with acclimatization of breathing in both -20 c and + 40 c. Also people who go for a septoplasty (correction of a deviated septum) will not get the info that a part of their turbinate (or all) will get resected so that the surgeon easily and comfortably can operate at the septum. The problem with this is:

First the patient don’t actually know what has been done in the nose, they don’t realize that an organ or a part of an important organ has been removed that has important function for the mucosa. If dryness coms along how could a patient connect this with the surgery when they actually don’t know what has been done in the nose?

Personally I went to fix a deviated septum and after some moths I developed light dryness that slowly increased every following year. In my case I just thought I had done a septum surgery and could not understand why I was so dry in the nose. First 4 years later I went to do another x-ray and then I discovered that 50% of the original length of the inferior turbinate’s was gone. The first anterior part of the turbinate did not exist at all any more, both tissue and bone was resected. Suddenly it was obvious why I had suffered with nose pain, dryness and breathing discomfort for years. 

My point is: When people start to get strong symptoms of Empty nose syndrome or Secondary Atrophic rhinitis first years after their surgeries, how in the world should they do the connection between symptoms and the nose surgery? Many patients will never even realize this connection, and all those cases of bad outcomes of surgeries will not be documented. Also, if they go to the healthcare system the knowledge about Empty nose syndrome is almost nonexistence. Especially in other countries than the US. This will also make complications from the surgery not documented.       

Plus, if the patients doesn’t even know that a part of their turbinate’s has been resected, how should they ever do the connection between surgery and symptoms themselves?

4 Personally I went back to the same surgeon that did the surgery to tell about my complications when I first discovered at my second x-ray that my inferior turbinate’s was resected, but that was 4 years after the surgery. When people discovers this so long after the surgery the surgeon don’t even remains at the same clinic any more in many cases. This cause that the surgeon will never know about the complications. Also from taking to many Empty nose syndrome patients I discovered that many are so stressed out and are so angry at their surgeon that they will never ever want to see him again. This too will cause many complications of surgeries not to be mentioned to the documented.

5 Many doctors and surgeons say that they don’t believe in Empty nose syndrome and actually there is no diagnose code for it and because of this complications from nose surgeries will never ever get documented.

6 Personally I went back to talk to the surgeon that did the surgery at me and strangely he actually confessed that it was his surgery that caused my Secondary atrophic rhinitis / Empty nose syndrome. But even when he confessed this for me he never wrote any code or diagnose of anything.

7 most surgeons don’t want to admit failure and complications because it’s not something that it’s considered good for their carriers. Most likely many of the surgeons who did a bad surgery don’t want to document anything about it because it’s not in their interests.

8 There is many developing countries that don’t have a functional system for reporting and documenting mal practice or bad surgery outcome. Patient who underwent nose surgery in all those countries will never get their complications documented anywhere.

9 Even if the complication from nose surgeries was perfectly documented, who would gather the information? Who would ever have something to gain from this? Most studies that are done in the world is performed by multinational drug companies with the goal of creating a product to earn money on. What kind of money can be earnt by making the conclusion that many people get complications from nose surgeries? None! Would the healthcare systems in each country really care about this? Doctors/surgeons are educating themselves for many years taking up big loans to support those years of study. It’s highly unlikely that any of those persons would admit that this specific surgery that they are educated on is causing harm to the patients. If that is confessed how can the surgeon continue making money then? My point is, No one has anything to gain from condemning nose surgeries and therefor such a study or gathering of info will never be done. Therefore more people will continue to get their lives sabotaged by the healthcare system.

10 Doctors say that there is just a few thousand people in the Empty nose syndrome awareness group and point out as an evidence that not so many patients are affected negatively from nose surgeries because there is just so few members. Well first of all, I google complications of nose surgery in Sweden and I found nothing at all about this. Even when info can be obtained in US when googling, this is not the case in many other countries. This causes that a lot of people never ever get to hear about Empty nose syndrome and therefore never ever gets the opportunity to be a member of the group. Besides, how many people in the world speak English good enough to be a member of the Empty nose syndrome awareness group? Also not all people in the world have Facebook! And finally, I have been a member of this group for 9 months now and during those months a saw many leaving the group because it gets too negative for them. And for those that actually manage to get some healing, they also leave the group to go one with their lives.

11 To distinguish how many people who get complications from nose surgery one can not only look at those patients that have a full blown Empty nose syndrome. You need to look at al symptoms, everything from light dryness to Atrophic Rhinitis, post nasal drip, recurrent nose infections etc.

Finally, the evolution has developed turbinate’s in most of the land living mammals to moisten and heat the air for optimal oxygen uptake in the lungs, reduce water loss during exhalation, to defend the body for pathogens and to be able to handle different kind of environmental conditions without discomfort. The animals with turbinate’s should be able to live in desert climates, subtopic climates, artic climates and humid tropic climates without causing discomfort when breathing. The evolution has developed this organs over hundred thousands of years and in the last 50-100 years some surgeons just decided that the evolution is wrong – “this organs is unimportant and can be removed without any consequences. This is just a naïve and an uneducated thought. Or it’s probably not about education at all because surgeons and doctors must know how important the turbinate’s are. It’s probably more about protecting their own future income stream and profession.

When ones decides to be a surgeon there must be a conviction that some parts of the body is unnecessary and can be removed without any complications but that’s not how the body and evolution works. If a specific body part would had been unnecessary the body and the evolution would have liquidated that by itself a long time ago.

Lastly I would like to say, there is records of 20% of people with a total Turbinectomy develops fully blown Empty nose syndrome (ENS) but it does not say anything about other symptoms from turbinate and septum surgeries.

If a large part of an important organ is removed it’s obvious that this will cause future problems. Maybe there will be no fully blown ENS but other symptoms like nerve pain and severe dryness and burning when inhaling is just serious enough to tell people the truth about this.

People deserves to know about possible consequences about the surgeries and people also deserves to get the truth told about what the turbinate’s are and what functions they have. Because I know, surgeons are not stupid, they passed the education and must have the intelligence to understand that turbinate surgeries will damage the nasal function in many cases, especially if it’s done aggressively.

We and future patients deserve to know the truth because it’s not only about our lives is about all the people we have around us that we love, they will be as affected by this as we do. Empty nose syndrome is a serious condition and people’s life’s get absolutely ruined by this, people loses their jobs, partners and joy in life and quite a few ending up committing suicide.

It’s a great cost not only for the individual but also for society and it’s not too much to ask that surgeons can tell the truth before surgery. We and future patients deserve to know what the turbinate’s are and how surgery at them or the septum can affect our future life’s.

And mostly important, the surgeons really need explain to to us what procedure that will be done. I have been reading so many stories about people who went for a septum plastic or a nose beauty surgery that ended up losing the whole inferior/middle turbinate’s, or a big part of it. That’s just criminal to do to an individual.

The surgeons have to consider: Many people come to you quite uneducated because we trust you. We believe that you know what you are doing after so many years education and therefore it’s important that you proper inform about everything, and also not doing things during surgery that wasn’t mentioned before.

Some surgeons and doctor says that they don’t want to inform about complications because it such a low risk but please consider this:

If you, your wife or your kids was about to board an airplane where there was a 5 % risk of catastrophic failure with death or life long consequences for health. Would you really board then? If that plane went down and your kid was on it, wouldn’t you think that you should had been told about the risk before? Isn’t that your right to know even when it’s only a 5% risk? Especially when there is such a serious consequences. Because that’s what it is for patients, its serious consequences and in many cases even suicides.

How come aggressive turbinate surgery is done in a modern world with all the knowledge there is? Particulary without informing the patients about the risks?

Well, to become a surgeon/doctor, just to enter the education you need pretty good grades from school. Also I guess you have to be pretty smart to succeed with the education. So by this we can point out that it cannot be about unintelligence. It has to be from something else!

So, could it be lack of education? I would say yes, and no. I don’t know exactly how many years it take to become a surgeon but I know it’s many, and during those years for sure all students will learn what the turbinate’s are, how they function and they must also understand how important they are. But at the same time I don’t know if the education looks enough into possible complications from surgeries. Why is this?

Because, first there is no long-term follow up on those who had nose surgery so even if the students would like to look into this th ere is almost no studies at all about this. Secondly imagen yourself, you have become interested in surgery and decided to educate yourself. Then first of all you have convinced yourself about surgery is a good thing that can help people, after that you join a big group and an organization that already has this this conviction to, even stronger than yourself. How could you ever question this? Because if you do so you will also question yourself? And up of that, having another opinion than you fellow students or colleagues will make you a criticized outcast excluded from the community. Are anyone really up to this just to claim what’s right or not? No, most people are not up to it, they can’t stand to be constant questioned. This is why nothing will ever change about this, people chose to go the easy way and adopt to everybody else. This is why more people will continue to be damaged from aggressive nose surgeries.

Also one important thing is that doctors and students get so convinced that they truly think they know better than hundred thousand years of evolution, they really believe that an organ can be removed without complications. Students and doctors letting themselves being brainwashed by their own and the organizations convictions that certain organs are unnecessary. 

So why do I mention this, because it’s extremely important to know for patients. If you ask your surgeon about possible consequences from surgery X or Y, this is like going to the hairdresser asking if she thinks you need a haircut? Of course the hairdresser will say yes, so will the surgeon because of his conviction that organs can be removed without problems.

And one important thing is also, the surgeon just sees the surgery and the short time afterwards, the conclusion they make from this is: I removed body part X or Y but the tissue around have now healed anyway. They don’t see the patients 3, 4, 5 or 10 years later. They don’t have a clue about long term complications for the patients.

But most important is the following, Imagen yourself in this situation. You have spent years of your life education yourself to become a surgeon, you are now in heavily debt to the bank but finally you started to make some GOOD money ether by employment or by your own business. You know one, two or maybe three types of surgeries and suddenly someone comes and tell you that you have to stop doing 1-2 of those because they actually damage people. Would you do that really? When all other surgeons are doing the same procedure and when you was told by school that this kind of surgeries can be done without complications? Would you risk your employment or your business because some patient claim that they have bend damaged by their surgery? No I don’t believe so! 99 % will definitely continue anyway, especially when the system is designed that way so that you could never be able to sue a surgeon for causing you damage.

Take a look at the surgeon Palo Macchiarini in sweden, he did untested experimental surgeries where he implanted a plastic trachea in patients and many of them actually died. But still, he is a free man and don’t need to take any responsibility of those deaths. This is important to remember for us patients, because when the system is built like this it’s easy to understand that doctors and surgeons don’t feel like they have to inform us about complication. They know, if something goes wrong, they are safe any way.

Also, don´t know how it works in the rest of the world, but in Sweden you don’t want to see people upset, worried stressed or afraid. If you tell the truth about possible complications from a surgery then the surgeons and the doctors see how the patient gets worried and this is hard to deal with. It’s just easier to work with people who don’t know about the risks because they are calm and ask less questions. Imagen yourself everyday dealing with people who is worried, a much easier work day would be to just to handle happy relaxed people.

So finally I just want to say, I’m not against surgeries or surgeons when such an intervention is necessary, for example when someone had an accident or it someone having cancer that cannot be treated in another way. But I’m very much against al surgeries when the process and the possible complications is not thoroughly described for the patient. And also I’m very much against it when body parts is removed that could had been treated without surgery. For example when it’s about septum and turbinate surgery.

The doctors don’t tell you that it’s absolutely normal to have a more or less deviated septum, few persons have a perfect 100% straight septum and that’s not anything that should be corrected with surgery. Why is this? Because the turbinate’s will adapt for this during life, they get smaller at one side of the nose and bigger at the other side. And most important, nasal congestion has to do with an over reactive immune system caused by food intolerances, allergies and bad food that irritates and inflames the body and the immune system. And how do I know this? Because I did an IGG food intolerance test and discovered many foods I didn’t tolerate. After that I removed those foods and changed to the Specific Carbohydrate Diet, a few month later I was cured from what the doctors say (an incurable chronic gut disease). So no it has gone 2,5 years and the Ulcerative colitis has totally vanished. I’m not even taking medicines for it anymore. It’s just sadly that I made this discovery to late, not a single person in the Swedish “fantastic” healthcare system ever told me about that food intolerance and inflammatory foods could be the cause of everything from nasal congestion to a chronic autoimmune disease. Instead I was recommended to have a totally unnecessary nose surgery at the septum and the turbinate’s with now has caused Empty nose syndrome and an extremely daily suffering.

One have to understand that doing a turbinate surgery is not treating the underlying cause of nasal congestion. It is like cutting the hand of because you have joint pain!

Turbinate’s are organs, developed in most of the land living mammals during hundred thousand years of evolution. It cannot just be removed to get rid of congestion without any complications, it’s obvious when you think about it.

And yes if the entire turbinate’s is removed there is nothing to block the nose but the patient will get much worse conditions than nasal congestion from this. This kind of surgeries have to stop and my goal is spread the knowledge to the world so that patients can make informed decisions about nose surgery. If I could get just one person to stop themselves from going true this surgery that will mean that my now sabotaged and miserable life would not be in vein.

So if you are a surgeon who reads this, please inform your patients about everything you plan to do in the nose, thoroughly explain what the turbinate’s are and how the nose function. Please don’t do anything you never mentioned to do in the nose and finally spend a good amount of time informing you patients about long term complications, do not only tell about short term risk of bleeding and infection. Please also make sure that the patient been investigated for IGE, AGA IGG food intolerances and other things that can irritate the immune system. And if you are a patient, make sure you really understand how different foods can affect inflammation in the body. If not an accident has happened that crocked the nose, most, if not all persons can get rid of nasal congestion only by removing foods and environmental factors, stress and other conditions that will irritate the immune system. If you have immune disorders the first thing that will be affected is the mucous membranes in the body, that’s just how it works. If that immune condition can be controlled the swollen and irritated mucus membrane will ease of to.

And please do consider, ones an organ is removed, it’s gone forever. It cannot ever come back. Witch also means the function of it is gone forever. Many doctor says that other organs do take over and you will not get problems but that just not true. This is just something they say to calm dawn worried patients. If the turbinate’s is removed or a large part of it is removed, no other cells can compensate for that. You will develop dryness and other problem, it’s just a matter of how long time it take for the healthy remaining cells to degenerate.

Finally consider: If you have a septal deviation/ crocked septum the normal procedure is that the turbinate’s is also reduced and the patient will never know about it. In my case if took 4 years before I discovered that 50% of my turbinate’s was removed by scissors. For 4 years I had been walking around not understanding why in the world I was just getting dryer and dryer in the nose for every month. The healthcare system just don’t think that something important to say to the patients and that’s really sick. It’s sick because they don’t tell you about it, but it even sicker because they do 2 interventions at the same time. Why would anyone would like to do this? Isn’t it much better to do as little intervention as possible, just fixing the deviated septum and then just wait and see if that’s enough. No they do all this at ones because they want to be able to show good data of how many patients that now breaths perfectly after surgery. When this is done at the same time they obvious don’t care at all about possible complications for the patient later on in life.

Anders Arbrandt Specialist i öron- näs- och halssjukdomar

There are surgeons al over the world doing this kind of surgeries, Sweden is not an exception. The surgeon who damaged me works at Sahlgrenska university hospital and has gotten no objection by the medical board. He still continues doing his job damaging more people with the same method of surgery every week. In Sweden there is also a none-fault insurance system where the surgeons themselves never can be financial liable for the damage they do to people. The clinic is forced to have an insurance and if the surgeons do something that damaging the patient it’s the insurance company that will have to pay for it. (LÖF). Unfortunately it’s very difficult to get a compensation from this insurance. When it’s about nose surgeries is most of the time impossible. Even if it should be possible it’s not going to affect the clinic any way. A clinic pays the same fee to the insurance company even if it has 1 damaged patient every year or 100. If the patient is not happy with the decision from the insure company he or she can take it to court. But this is an expensive and complicated process extremely hard to win against the medical profession. A profession that will try to do everything they possible can not to be convicted in court. Only a very few cases ever reach the court and most of them will end in a loss for the patient. Both emotionally, financially and legally.

Even if the patient would win the process it’s not the surgeon himself that will have to compensate the patient but instead the employer. So the surgeon goes free anyway. It’s only in a very few cases that the surgeon has ever been sentenced and in those cases the surgeon pretty much have deliberately tried to harm the patient. So once a person has admitted to surgery there is no chance for justice after a potential damage.

Finally it also has to be mentioned that the Swedish law (Patientskadelagen) don’t care about if the surgeon or the clinic has warned the patients about damage and complications from the surgery. At the same time this law doesn’t care about if the patient has given his consent to surgery or not. After knowing this is easy to understand whey clinics to aggressive nose surgeries and don´t warn about the complications.

3 kommentarer:

  1. I had deviated septum correction in 1996 and radiofrequency turbinate reducation in 2006 and I totally relate to what you are writing. For me the hardest part is being starved for air when I breath. I have a rethrognathic jaw that should have been treated with palate expansion or/and jaw surgery that also widens the airway, rather than extracting molar teeth and pulling teeth back to further restrict a narrow airway. Of course septoplasty and turbinate reduction made everything even worse. So there is a lot that medicine could learn from these past mistakes. Unfortunately at The Karolinska institutet there are still old professors preaching the same theories and unwilling to learn from patients experiences. How do I know that? Because i was a student there. As of trusting doctors, you might want to ask them how paracetamol works first (the mechanism is still not known).

  2. Sorry to hear that, I also had braze in the upper jaw pulling back teeth’s, I think that also contributed to a narrow nose and a blocked passage since I already had a palate that was narrow and high... Yes I know what you mean, these doctor’s think they know it all. For me it’s the opposite. The more I learn about a subject, the more I realize that I don’t know. It’s important to have an open mind and listen to the patients but sadly this is not how doctors do it.

  3. Övriga inlägg på bloggen att läsa rörande näsoperation:

    Nose complications from nose surgery and why ints underdiagnosed (Engelska)

    inlägget förklarar varför komplikationer, risker och skador är kraftigt underrapporterade vad gäller näsoperation. Inte bara i Sverige utan världen över.

    Näsoperation risk och komplikation som sjukvården döljer

    En genomarbetad analys på över 70 A4 sidor som går igenom risker och skador med näsoperation som sjukvården döljer. Fakta bygger på över 1300 timmars efterforskning. Samtal med skadade patienter, studie av röntgenbilder, bilder via Endoskop. Egen erfarenhet samt studie av den forskning som finns tillgänglig.
    Hänvisning till forskningsrapporter finns i inlägget.

    Operation av näsa, nässkiljevägg och Septum – Risk och skada som döljs
    Fokus i denna artikel är på de skador som kan uppkomma vid operation av Nässkiljeväggen. I artikeln ingår även de skador som kan uppkomma vid operation av näsmusslorna eftersom en operation av nässkiljeväggen och näsmusslorna ofta kombineras.

    Näsoperationen som kom att förstöra mitt liv! Operation av Septum och näsmusslorna.

    En genomgång så att du själv kan undvika att begå samma misstag. Läkaren som utfört min operation heter Anders Arbrandr och är verksam på Sahlgrenska universitetssjukhus. Närmare bestämt på Öron näsa hals. Han är också verksam via ÖNH-institutet på Carlanderska. Samt genom eget företag: Arbrandt Consulting samt genom Arbrandt & Rudbergs AB. Att undvika denna läkare är definitivt ingen garanti att inte skadas, andra läkare utför samma typer av aggressiva operationer också.