21st January 2020
Leigh Day Solicitors released a statement today about the MHRA acknowledging Breast Implant Illness (BII)
So excited to announce that today the MHRA finally put up their statement recognising Breast Implant Illness!!
It has been a long time in the making, waiting and emailing… but I am really pleased with the statement and feel that this will really help women in the future that are suffering with any symptoms they feel are related to their implants… without getting the usual eye roll and dismissal.
It is yet another baby step in the right direction to raise awareness and help women across the UK. A huge thank you to everyone who has helped us get to this stage.
Here is the link to the statement, which I have copied and pasted below…
Symptoms sometimes referred to as Breast Implant Illness
Breast Implant Illness (BII) is a term sometimes used by people to describe a variety of health problems they associate with their breast implants
We have received reports from people with a variety of health problems which they say are related to their breast implants. The reports are not limited to a particular manufacturer or type of implant and include silicone and saline (salt water) filled implants, smooth or textured (rough) surface implants.
The reports often describe symptoms like “brain fog”, fatigue, anxiety and joint pain. These health problems are very concerning for those experiencing them.
There have also been reports of a serious medical condition in which the immune system mistakenly attacks the body (autoimmune disorders).
Some people have reported their symptoms improve once their breast implants were removed.
We, as with other regulators, continue to collect reports and information from a variety of sources, such as through our adverse incident reporting system and published research.
We encourage members of the public and healthcare professionals to report issues, even if suspected, with breast implants through the Yellow Card scheme.
What we know
Currently we do not know if there is a link between breast implants and the reported health problems, as there is no single disease which could explain the symptoms some people are reporting to us or to their clinicians.
Very similar health problems were reported in the 1990s. A detailed review of the safety of smooth and textured silicone gel breast implants was carried out by the Independent Review Group (IRG) set up by the Department of Health (now Department of Health and Social Care). This did not include saline filled breast implants which are not used frequently in the UK, however saline implants also have a silicone outer casing.
The IRG report published in 1998 found no evidence of a scientific relationship between silicone gel implants and any long-term illness affecting the whole body. It also found a lack of evidence of a link between silicone gel implants and any specific connective tissue disease, such as scleroderma, which causes hardening of the skin and some internal organs.
Worldwide, research into the safety of breast implants has continued over the last 30 years. Whilst there remains no definitive evidence or known scientific process demonstrating that breast implants cause these symptoms, we continue to look at research with our independent clinical experts to see if any new evidence comes to light which would increase our understanding of this issue.
We understand from the clinical community that there remains a need for these devices in certain clinical situations. The Association of Breast Surgeons (ABS), British Association of Aesthetic Plastic Surgeons (BAAPS) and the British Association of Plastic, Reconstructive and Aesthetic Surgeons (BAPRAS) have recently published a joint statement, which also covers this topic.
We take a scientific evidence-based approach and if the conclusions reached about breast implants change in the light of this continuing evaluation, we will communicate further advice to patients and healthcare professionals.
Considering having a breast implant
For the majority of individuals breast implants are a personal choice but in a small number of people they may be suggested alongside other options, for example, to reconstruct the breast after cancer surgery.
Breast implants, as with any medical device, are associated with potential health risks. To make a fully informed choice, anyone considering breast implant surgery must be told by their implanting surgeon about the known short and long term risks, and be made aware there may be unknown risks. This includes warning patients that some people have experienced a variety of symptoms which they associate with their breast implants.
More information about breast augmentation and breast reconstruction can be found at the following pages:
MHRA’s role and what are we doing
Patient safety is our highest priority and we always investigate where there are safety concerns raised about medical devices, including breast implants.
Our role is to identify medical device safety problems as early as possible (rather than ‘recognise’ conditions, diseases or illnesses) and adverse incident reports help us to do this. We also look at the scientific literature and consult academics and the clinical community. We work closely with an independent expert group, the Plastic, Reconstructive and Aesthetic Surgery Expert Advisory Group (PRASEAG), as well as other regulators across the globe.
PRASEAG members represent breast surgery, toxicology, immunology, pathology and imaging. The group also includes a patient advocate and representatives from the ABS, BAAPS and BAPRAS.
To increase our understanding of breast implant safety, together with independent experts, we continue to pro-actively monitor reports and research from around the world. If any new evidence indicates a link between implants and the variety of symptoms reported, we will update this page and will update our advice as necessary.
Reporting suspected problems with breast implants
If anyone with a breast implants notices any lumps, swellings or distortions in their breasts, neck or armpits or develops any health problems they feel may be related to their breast implants they should see their GP or implant surgeon in the first instance.
We strongly encourage healthcare professionals and anyone experiencing any symptoms they believe to be associated with their breast implants to report these through the Yellow Card scheme and include the following information where possible:
- details of the implants, including manufacturer, model, batch number and surface texture. You may wish to ask your implanting surgeon for details of the manufacturer and model of your breast implants, so we have as much information as possible. However, if this is not possible, please be reassured your report will still be useful to us
- details of problems you have had with your implants and when the problems started. Tell us if your GP or surgeon has given you a diagnosis for these symptoms and if you are having any treatment, as well as any information following this treatment
- when you had the implants put in (the implantation date) and your age at the time
- whether you have had the implants removed or replaced? Please give dates of when this happened and details of any replacement implants
- whether the implants were put in for reconstructive or cosmetic reasons
- whether you have had previous breast implants or tissue expanders and for how long
Every report contributes to our knowledge about breast implants and their usage and helps us to develop suitable safety guidance and take appropriate action where necessary
For help reporting via the Yellow Card scheme, please watch this video on how to report a problem with a medical device – A Yellow Card guide for patients.
I honestly can’t believe that three and a half years have gone by since removing my breast implants.
In 2015 I was in a world of pain and diagnosed with an autoimmune condition, Rheumatoid Arthritis. It was a blow to say the least. A disease that allows my immune system to run riot attacking itself at will.
The cure… there isn’t meant to be one.
The way to deal with it… a cocktail of medication that suppresses the immune system.
Fortunately this unfortunate episode in my life was for the greater good. It allowed me to search deeper into the reason why I was in this annoying health predicament, opened me up to go onto support others in the same situation.
Having discovered that the last 14 years of illnesses correlated to my toxic ‘fun’ bags, I was quick to remove them see how many of the symptoms I had suffered with over the years would disappear.
The fatigue, hair loss, dizzy spells, headaches/migraines, back & neck pain, anxiety, panic attacks, itching all over my entire body, gastro intestinal issues, random allergies… all gone!
Raising awareness became my top priority once I explanted. Together with the wonderful Sandy Cooper we co-founded a support group for women in the UK going through the same painstaking journey as we did. Constantly being dismissed by their GPs, consultants or surgeons because all their test results came back normal. Hearing the same words over and over again that there are no side effects/symptoms relating to breast implants because they are inert and there is no scientific evidence to justify otherwise.
Three and a half years on and our group is near the 3000th member. These women are now part of an incredible community that truly understands what they are going through and have the support they need every step of the way, to help them heal.
This year (2019) we achieved, what we thought would be, the unachievable. A documentary was aired on Channel 4, where I dusted off my old presenting skills and reported for Dispatches about the growing number of women complaining about illnesses, as well as some being diagnosed with a rare form of cancer (BIA-ALCL) relating to breast implants. Since then, there have been many fabulous media reports following suit and awareness is growing daily.
We have grabbed the attention of surgeons across the UK through their societies such as BAAPS and BAPRAS, whom are now holding lectures regarding BII and how to help women.
The MHRA (UKs regulatory body), have also taken note of the situation and we are currently waiting for them to hopefully follow suit from the FDA and release a statement about BII.
Miss Diagnosed started off as a little blog, documenting my journey of BII. It has been growing slowly over the years and is now bursting with a wealth of information from why our bodies react to implants, understanding the signs & symptoms of BIA-ALCL, BII journeys from many different women with many different brands of implants – to my journey, detox and a few recipes that I have used along the way.
I really hope you find this website helpful, supportive and comforting during your journey back to health after Breast Implant Illness.
Please be aware that this blog is protected by copyright law. It cannot be copied, distributed or exhibited in a whole or part without my permission.
This is the million dollar question. The one that all us ladies whom have been and still are going through illnesses because of their breast implants would love the answer too.
There have been some fabulous research studies on this topic, like this one by Dr Mark Clemens, that help us to try and piece the puzzle together, as to why we have become so ill.
During my years of healing (currently at 3.5 years since explant), I have tried many different diets and detox’s, had more blood tests than I can shake a stick at and tested my gut, adrenals and even my hair to help me navigate such a tricky and uncertain healing path.
When I started to study anatomy and physiology and how our body’s function on a daily basis, it was fascinating to learn just how a small amount of stress can upset the homeostasis (balance) of the internal workings of our amazing machine. I found it quite a good place to start to try and find some answers.
Are you ready? I have made this as simple as I possibly can without going into loads of depth and technical terms…
When breast implants enter the body a sequence of events occurs in the surrounding tissue and eventually ends in the formation of foreign body giant cells where the tissue/implant meet (1).
A foreign-body giant cell is a collection of fused macrophages (a type of white blood cell of the immune system, that engulfs and digests anything it feels is a danger to healthy body cells) which are generated in response to the presence of any large foreign body. This is particularly evident with implants that cause the body chronic inflammation and foreign body response (2).
When a macrophage is exposed to inflammatory stimuli and attempts to break down the foreign object, they will secrete a wide range of small cell signalling proteins called cytokines. There are many different types of these cytokines called interleukins and they are separated with a number, such as IL-1, IL-2 and TNF-a. This secretion of cytokines then signals an inflammatory and wound healing response (1/4).
According to research by A.J. Dunn, cytokines are the major chemical messengers within the immune system, and specific cytokines IL-1, IL-6 and TNF-a, activate the Hypothalamo-pituitary-adrenocortical (HPA) axis (3).
Are you still with me? Fabulous, I’ll continue…
The Hypothalamic-Pituitary-Adrenal (HPA) axis is a group of hormone secreting glands from the endocrine system. Its role is to regulate the internal environment of the human body. Once the HPA axis is activated, it sets yet another chain of events off within the body, signalling the anterior pituitary gland which in turns signals the adrenal glands. The adrenal cortex then releases cortisol (5). Cortisol affects many different functions in the body. It controls blood sugar levels, regulate metabolism, help reduce inflammation and controls blood pressure. The adrenal medulla releases two hormones called epinephrine and norepinephrine. These hormones are the ones that contribute to the fight-or-flight response of the sympathetic division of the autonomic nervous system. The results of this stimulation dilates the airways, increases the heart rate, blood pressure and blood levels of glucose and fatty acids, which allow the body to handle any potential stressors. When the cortisol levels get too high in the bloodstream, they hypothalamus kicks in again and switches off the stress response and stops releasing its original set of hormones. This is all in hope that the stressor has been dealt with, balance and calm have been resumed (6).
HOWEVER – there are some instances when this HPA cycle falters due to the ongoing stressor. When levels of cortisol secretion result in the body being unable to return back to its normal homeostatic equilibrium, it causes chronic stress and starts suppressing the immune system. This can lead to many stress related disorders and diseases when it dysfunctions (8) including; mental health issues from depression, anxiety (9); the failure of the pancreatic B-Cells causing irregularities in insulin production, which can lead to diabetes; gastrointesinal issues, including ulcerative colitis and IBS; depressed immune regulations causing more persistent viral infections and autoimmune conditions like rheumatoid arthritis and adrenal gland disorders (5).
So this is how an invader to our system, can have such an impact on the internal workings of the body. But then we need to take into account how other stressors creep into our lives too and add to Stress Mountain…
When we start to get sick and the results from the doctors are all normal and we feel like we are loosing our minds and the illnesses affect our daily lives. WE GET STRESSED. This time on a mental level. This type of stress also has detrimental effects on our internal workings.
Psychoneuroimmunology or PNI as they like to call it in the medical biz, is the study of interactions between the nervous, endocrine and immune systems and the communication pathway between them all. In a nutshell, a group of experts have also found that stressors arising from psychological or psychosocial situations activate a stress response within the HPA axis. Continual stressors, which are also known as chronic stress, suppress both cellular and humoral (blood or bodily fluids) immunity. This compromises the immune system and increases the chances of illness, infections and diseases (6).
So put all of this together from a foreign body response and our psychological stress response, that is a lot of stressors attacking our homeostatic balance. Once it starts to falter and other illnesses or infections or even worse case diseases join in… it simply adds to the heavy strain our bodies are already under, trying to regain that balance and harmony. If our bodies are going through this every day for years and years because of our implants, you can see why our little walnut shaped adrenals get burnt out by dishing out the cortisol 24/7 with no rest bite.
Now just to make you aware, ‘adrenal fatigue’ is not an accepted medical diagnosis. BUT when you look at the signs and symptoms of ‘adrenal insufficiency’ they do match many of our symptoms with BII, such as fatigue, body aches, weight loss, low blood pressure, light headedness, loss of body hair (11), difficulty getting to sleep, sugar cravings, brain fog and lack of motivation. There is a fabulous doctor who truly believes in adrenal fatigue and his name is Dr James Wilson. He has a great webpage, where you can learn loads about it and how to help nurture the little walnuts back to health again.
So is this it?
Nope, unfortunately not. This stress situation really likes to really get its claws into everything. Are you ready for the next round? Okay here goes…
Next on the hit list is our gut. Yes stress has a detrimental impact on our microbiome too. So here are some fun facts about how cortisol effects the gut:
- it diverts blood away from the gut to our muscles ( to help us fight or run from said stressor, which obviously we can’t as we have had it sewn into our chests – yay!) .
- it slows down the production of saliva in the mouth, which means the enzymes we need to break down food is reduced, thus impairing our digestion.
- it decreases prostaglandins, which are a compound that protect our stomachs from acid. So you may find you have a more sensitive tummy.
- it slows down digestion or can cause sudden diarrhoea, this means that the nutrients we need aren’t getting absorbed because they are being evacuated out at high speed.
- it compromises the immune system with chronic stress and with 70% of our immune system found in our guts…need I say anymore. (12)
Stress can also make the intestinal barrier weaker, allowing gut bacteria to enter the body. Our immune system can normally take care of these little invaders (13), unless it’s not functioning as well as it should be due to the chronic stress within the body that is already affecting our immune system!!
To wrap up on the gut, prolongued stress can alter your microbiome. These alterations can cause the bad gut bacteria to monopolise and multiply, which can again impair the immune system thus causing health issues. Not like we haven’t heard this old chestnut before.
So when you now look at everything we have just learnt as a whole, we have a hell of a lot of stress coming from many angles. No wonder our bodies are exhausted trying to cope. No wonder we have symptoms and illnesses that come and go, leaving us baffled as to what is wrong with us. No wonder we feel like crap.
In my non medical opinion – once explantation has occurred the following should definitely be looked into to help you along your healing path.
You can get your adrenals tested through a nutritionist to see what their function is. If they are exhausted, start slowly rebuilding them back up to cope with normal day to day life. Diet can also help adrenals too.
There are many gut tests out there. I would recommend again using a nutritionist or naturopath to really help you understand the results and be put on the right path to get your microbiome back to being full of the good guys and not the bad ones. I used a great probiotic called Symprove (not affiliated or an ad) that worked wonders for me. You can also see my gut test here and I would really recommend Giulia Enders book aptly called The Gut, if you want to learn more about our microbiome, really easy read too.
Learn the art of not allowing external stress to affect you.
I did this through a wonderful breathing technique which not only helps to de-stress, it also is a great way to get the lymphatic system working at optimal level, help the body to detox, as well as creating a relaxed state, reducing stress and anxiety. In fact there are so many benefits to the breathworks that I have written all about it here for you to read.
Having had all these specific tests done for my gut and adrenals, I found it so beneficial for my mental health during this tricky time, purely because I had a set of results to work from. When I then re-tested a year later to gauge how my body was functioning and could see the changes in the results, it made such a difference to me knowing I was on the right healing path.
This journey back to health is not an easy one. It isn’t a fast one either. Patience is needed, as well as being kind to yourself. That means don’t beat yourself up about having implants, it is done, it is in the past and you can’t change that. So don’t be adding any more to Stress Mountain! Allow space to stop, rest, sleep and nurture yourself when you are feeling at your lowest ebb.
I hope this post has helped you understand why your body has thrown its toys out the pram, and to work out the best plan for your personal healing path.
Once you’ve explanted you may feel on top of the world but after a few weeks you may suffer the crash and feel utterly rotten again. This is all really common for us ladies. Just hang on in there.
Remember every body is different, what may take a week for one, may take months or even years for another.
You got this…
Disclaimer- I am not medically trained and nothing on this website constitutes medical advice .
(1) Anderson, J.M. (2007) Foreign Body reaction TO biomaterials. [Online] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2327202/ [Accessed: 11.11.19]
(2) Foreign-body giant cell: [online] https://en.wikipedia.org/wiki/Foreign-body_giant_cell [accessed 11.11.19]
(3) Dunn, A.J. (2008) The HPA Axis and the Immune System: A Perspective [online]https://www.researchgate.net/publication/223634973_The_HPA_Axis_and_the_Immune_System_A_Perspective [Accessed 11.11.19]
(5) Longstaff, A. (2011) Bios Instant Notes in Neuroscience. 3rd ed. New York and Abingdon: Garland Science, Taylor & Francis Group, LLC : Tortora, G. J. and Derrickson, B. (2011) Principles of Anatomy & Physiology. 13th ed. New York: Wiley
(6) Tortora, G. J. and Derrickson, B. (2011) Principles of Anatomy & Physiology. 13th ed. New York: Wiley
(7) Longstaff, A. (2011) Bios Instant Notes in Neuroscience. 3rd ed. New York and Abingdon: Garland Science, Taylor & Francis Group, LLC
(8) Rhodes, M.E. McKlveen, J.M. Ripepi, D.R. and Gentile, N.E. (2009) Hypothalamic–Pituitary–Adrenal Cortical Axis. Hormones, Brain and Behaviour. 2nd ed. 5 (73) p.2319-2314. (Online). Available at: https://www.sciencedirect.com/science/article/pii/B9780080887838000735 (Accessed: 30 December 2017)
(9) Hambsch, B. Landgraf, R. Czibere, L. and Touma, C. (2009) Genetic Transmission of Behavior and Its Neuroendocrine Correlates. Hormones, Brain and Behaviour. 2nd ed. 5 (84) p. 2633-2673. (Online). Available at: https://www.sciencedirect.com/science/article/pii/B978008088783800084X (Accessed: 30 December 2017)
(10) McLeod, S. (2010) Stress, Illness and the Immune System. Simply Psychology. (Online). Available at: https://www.simplypsychology.org/stress-immune.html (Accessed: 5 January 2018)
(12) The Gut Stuff – Instagram @thegutstuff [Accessed:6th November 2019]
During my time in what I called prison aka my bedroom, I spent a lot of time on social media whiling away the hours scrolling through post after post. Mostly I hated it because everyone seemed to be having so much fun and looked healthy and happy in an upright position. However one day a post popped up sharing a recently published book by none other than Rebecca Dennis, called ‘And Breathe’. Having read a little write up about it, I ordered on Amazon prime and it arrived the next day. I read the first chapter, shed a million more tears and emailed this Ms Dennis straight away, asking if she had any appointments for a breathing session. Thankfully she did.
That was three years ago and I haven’t looked back.
Breathworks has changed my life. It has helped me in so many ways, I am not even sure where to start. But one of my main issues when I arrived at Rebecca’s door was my broken body and how it was affecting me mentally, physically and emotionally. I knew this was all down to my journey with Breast Implant Illness (BII) and through my breathwork sessions, it helped me to release all the anxiety I was carrying, the depression that was weighing me down and gently detox, which is such a huge part of the healing process for BII.
What is Breathworks?
Transformational breath® is a natural and gentle self-healing technique that activates the body’s resources to promote health and well-being from within.
Learning to breathe more efficiently, opens and expands our breathing to support the body’s natural healing abilities. 70% of the body’s toxins are released through exhalation. Deep diaphragmatic breathing allows high volumes of oxygen to be absorbed by the lungs, allowing it to cleanses and revitalise the body. This process brings us more energy, increased detoxification, strengthens our immune system and improves our metabolism & digestion.
How can Breathwork help with women healing from BII?
When it is first discovered that implants are the possible cause of many years of ill health and a wealth of symptoms, it is incredibly common for the ladies to go into panic mode. They become incredibly angry with the system and themselves, for allowing this situation to occur which has lead them to missing out on living a full and happy life.
They start their journey by going to the doctor for advice and then continue with a desperate search to find a surgeon whom has some understanding and sympathy with breast implant illness. There is a sense of urgency in getting them removed as quickly as possible, which adds to the stress load. However during this process they can find at times that they are dismissed, made to feel crazy and also incredibly alone. Then there is also the fact that there may not be any money in the kitty needed to explant. These situations can cause a lot of anxiety, on top of feeling so poorly.
After months or even years, the day of the explant has finally arrived. The general anaesethic is always daunting and there is more worry regarding the surgery and the outcome.
In this pre explant phase, a simple breathing exercise would be so beneficial to all ladies going through this. By helping to calm your sympathetic nervous system, it allows the body and mind to calm, bringing peace and clarity from within.
Rebecca Dennis has a wonderful website, The Breathing Tree, that has some incredible easy to use breathing exercises… you may find them helpful during this period of waiting to explant.
IS A MINE FIELD for most ladies. They have had their explant and now they are moving forward into the healing phase.
The first few days/weeks are mostly amazing for many of the ladies. They find that they feel alive again, the brain fog has lifted, their hair has stopped falling out ( just to clarify that all women are different and go through different symptoms and healing patterns). Between weeks 3-8 it can all take a nose dive. Suddenly their bodies are showing the same symptoms. Panic ensues as their ‘freedom from the symptoms’ comes to an abrupt end and new lease of life seems mere flash in the pan.
This is when the real healing starts to take place.
This is where I found the breath and why it has been so beneficial in my healing process.
So in combination of changing my diet and my lifestyle, Transformational Breath® helped me to calm my sympathetic nervous system down, reduce the stress load and detox.
Detoxing is one of the main and most important parts during the healing stage.
None of us have any idea what the hell is going on inside our bodies thanks to the implants. It is believed that there are toxins within the make up of these implants that cause disruption to our endocrine system, messing with our hormonal balance and adrenals and putting our bodies homeostatic balance out of whack. With our bodies building a defence wall around the foreign invader, this causes a continual inflammatory response, thus keeping our bodies in a state of attack. All of this has a detrimental impact on the health of that body and once one system is out of balance it has a knock on effect for the rest, which can cause a multitude of health problems, mineral and vitamin imbalances – which in turn then has a knock on effect on our gut microbiome health, leading to possible depression, anxiety and panic attacks.
So to detox our bodies and help it regain balance through out, getting our sluggish lymphatic system working is the key. Lots of us decide as part of our healing to have a lymphatic drainage to help navigate the toxins being released from our systems. This is normally achieved by seeing a lymphatic drainage massage therapist.
The other key to getting the lymphatic system working at optimal level is to exercise. However when you are feeling ill, the last thing you want to do is exercise and if you were stuck, like me, in bed, it simply leads to a stagnant lymph system and build up of toxins – compromising your cardiovascular system as well as your immune system.
However a simple breathing session can achieve all that by getting that sluggish lymph system working again. Learning to breathe more efficiently, opens and expands our breathing to support the body’s natural healing abilities. 70% of the body’s toxins are released through exhalation. Deep diaphragmatic breathing allows high volumes of oxygen to be absorbed by the lungs, allowing it to cleanses and revitalise the body. This process brings us more energy, increased detoxification, strengthens our immune system and improves our metabolism & digestion.
During the stress of BII, breathing patterns change with emotions running high, the pains running rife around the body and also having heavy weight of implants on the chest.
When we are in pain it makes us tense up, breath more rapidly and this signals to the body that there is a problem and it goes into fight or flight situation. The body already struggling under its constant immune response to remove the foreign intruder of the implants, now has an added stressor of irregular breathing. The sympathetic nervous system releases adrenaline as it is in this state of fight or flight, elevating the heart rate (causing anxiety) which on a constant loop, leads to chronic illnesses – such as autoimmune issues.
Retraining the breath and opening up the diaphragm, relaxing the body, signals that all is well, which in turn activates the parasympathetic nervous system to relax and allows the body to regain homeostatic balance.
Transformational Breath® has completely changed my life, by unblocking restricted breathing patterns and allowed me to successfully regain my health and live my life to the fullest again. Experiencing this profound healing technique inspired me to become a facilitator so that I could share this incredibly powerful and beautiful healing tool with others.
If you are interested in learning more about this powerful healing tool and all its benefits, you can find more information on my website A Little Breathing Space.
It is a subject matter that is always arising on the support group.
- What is the difference between enbloc and capsulectomy?
- What will happen if the capsules are left in?
- Why won’t my surgeon commit to removing 100% of the capsules?
Lets answers these questions, so that you are fully informed, can make the right decision for your situation and also walk into your surgeons office with a really clear understanding to get the best out of your consultation.
WHAT IS A CAPSULE?
A capsule is the scar tissue that forms around the implant within the body. It is the body’s natural defence mechanism to protect itself from the introduction of a foreign object. It can be referred to as scar tissue, scar capsule or just capsule.
WHAT IS THE DIFFERENCE BETWEEN ENBLOC & CAPSULECTOMY?
Enbloc is actually a french term used to describe a surgical excision of a cancer. This is why some surgeons may not fully understand what you are requesting. Enbloc terminology for the removal of implants has come across the pond from the USA group and the reason it is now widely used within the UK explant community.
There are two types of capsulectomy…
Partial Capsulectomy: This is where some of the scar tissue could only be removed.
Total Capsulectomy: This is where the all the capsule is fully removed in either sections/pieces or completely as a whole unit, with the implant still contained inside.
So for clarity on terminology here in the UK;
TOTAL CAPSULECTOMY is actually the correct term to use when speaking with a surgeon if you want all the capsule removed. It is a type of enbloc capsulectomy.
The procedure of a full total capsulectomy (as a whole unit) was originally performed when the surgeon knew that the implants were ruptured. This is to prevent any silicone leaching into the cavity (the area where the implant was placed).
However many women now seeking explantation, request this specific technique as they are concerned their health issues are down to a possible biofilm (a mucusy film containing bacteria and microorganisms) that can develop in between the implant and capsule, silicone leaking from the implants or even in the case of saline implants, mould that has formed within the implant. They want to make sure that if there is anything nasty lurking, that it is contained within the capsule during the operation and doesn’t get the chance to seep into their bodies. This gives them peace of mind that they have the best chance of regaining their health and eradicating any illnesses and symptoms they are suffering with.
WHY A SURGEON MAY REFUSE OR NOT COMMIT TO REMOVING THE SCAR TISSUE/CAPSULE
This topic has recently been debated by surgeons at the BAAPS meeting last month (October 2019). During the lecture on Breast Implant Illness (BII), theatre surgeons questioned why a capsulectomy was justifiable due to there currently being no scientific evidence for a patient to undergo this procedure, unless they have proven Breast Implant Associated – Anaplastic Large Cell Lymphoma (BIA-ALCL).
The surgeons concerns are that there are possible risks involved, such as atelectasis (partially collapsed) or pneumothorax (fully collapsed), where the lung collapses after being accidentally punctured during the removal of the scar tissue due to it being stuck to the ribs. This particular risk is more likely to happen to patients that have their implants under the muscle than over the muscle. Obviously these complications can be dealt with. However if a surgeon happened to be taken to court, they would have to clarify why they felt the need to perform a capsulectomy when there currently isn’t any scientific evidence stating that it is medically essential for the general removal of implants. It basically leaves them wide open to litigation.
THIS is why some surgeons may tell you they are not willing to commit to removing the scar tissue.
In my opinion a GREAT SURGEON is a one that is completely honest with you about what they are able to achieve, by informing you that even though they will do their best to remove the capsule they cannot make any decisions on this until they have actually started the operation and can see exactly where the scar tissue has attached itself and if it is safe to remove it.
SHOULD I REMOVE OR LEAVE THE SCAR CAPSULE IN?
This is a very personal choice, but one where understanding the pros and cons are essential.
As we are all aware there has been a lot of press surrounding highly textured silicone breast implants and their connection to a rare form of non-hodgkins lymphoma. So removal of the capsule lowers the risk of BIA-ALCL occurring post explant.
If you are concerned about the risks of BIA- ALCL and want peace of mind to be able to move on after explant, there are tests that can be done on the scar tissue after explant. Simply ask your surgeon if they can send your capsule off to histopathology to be tested for CD-30 to put your mind at rest. This must be requested and discussed with your surgeon prior to the explant.
If you want to know more or are worried you are having any symptoms of BIA- ALCL please click on this link for more information.
Also many explanted ladies (including myself) have found that their histopathology results report silicone debris within the capsule causing chronic inflammation. This shows that removing the capsules at the same time as the implants helps reduce the immune response and inflammation, thus allowing the body to heal. Otherwise this inflammation continues post surgery as the issue is still embedded within the capsule.
More evidence is definitely needed in this area. As noted above, some surgeons agree with this recommendation and feel happy to offer the possibility of removal, whereas others feel more research is needed and until this can be achieved are being more cautious and will not perform it at all.
If this is a procedure you definitely want then my advice would be to email their secretary prior to booking a consultation, to find out which side of the fence they are on. That way you won’t feel like the consultation is a waste of time and money.
Anecdotally, we have found that women whom have left their capsules in ended up paying for a second surgery to remove them at a later date, due to the fact they were still struggling with symptoms and illnesses. Most found that once the capsules were removed their health started to improve.
So I have some really fantastic news.
Plastic surgeon Mr David Floyd contacted me a little while ago as he had been asked by BAAPS to present a lecture on BII and wanted advice, clarification etc on some areas. As you can imagine, I was over the moon and more than happy to be of some help.
It was really lovely to speak with a surgeon who understands what Breast Implant Illness (BII) is all about. Whom has compassion for women wanting to explant because they have a set of symptoms and illnesses they are realising are connected to their implants. A surgeon that is willing to discuss a very grey area with his peers due to the fact he has seen how the number of women arriving at his clinic with BII is rising.
The lecture was well received by all the members. They agreed that even though there is no scientific evidence regarding BII, there are a lot of patients walking through their doors and once explanted, are much better.
They discussed and agreed that we need to be looked after properly with respect and understanding.
The President of BAPRAS has also requested that a patient advocate help them to work things out. Mr Floyd asked if I would be happy to do this, and of course I have said yes. I am still waiting to hear from Mr Henley.
The Association of Breast Surgeons has also asked for Mr Floyd to speak at a meeting in June on BII.
This is just incredible progress that we have surgeons, whom are well respected in their field, now discussing BII and being heard.
I will update you all as soon as I know/ hear any more.
Raising awareness for Breast Implant Associated- Anaplastic large Cell Lymphoma (BIA-ALCL) is key to helping women across the world understand the risks and symptoms relating to a rare form of cancer that can start around breast implants.
The MHRA contact myself and several charities recently to highlight the work they are doing in partnership with the Plastic, Reconstructive and Aesthetic Surgery Expert Advisory Group (PRASEAG).
To read this letter please click here .
I feel this is a positive step in gaining awareness within the medical sector and for women seeking advice on BIA-ALCL within the UK.
A group of experts will be meeting in November (2019) to discuss how we can improve the care and monitoring for women with implants and health problems within the UK. I will update on the progression of this as soon as I can.
For more information on BIA-ALCL and understanding the signs, symptoms, please click here.