All You Need Are Some Breast Friends

While waiting for Dr X to get my lyme disease blood tests back to me, I woke up one Saturday morning to find that my left breast had gone hard and felt really uncomfortable. I decided to get the advice from the only person I truly trusted at the moment,  Dr Google. In his search bar, I typed

breast implant hardening and autoimmune diseases

As the page loaded, I honestly couldn’t believe my eyes. My heart started to beat so fast that I felt like it  was going to explode out of my chest with excitement.  There was so much information on my computer screen, that I honestly couldn’t take it in quick enough.

I was reading about a condition called Breast Implant Illness (BII) and from what I could see there were many, MANY women who have the same symptoms as me. The more I read, the more excited I got and the more my head filled hope. BII was linked to my labrynthitis issues, my panic attacks, my constant back and neck ache that I just put down to my age old scoliosis (I had been diagnosed at 16years old)my brain fog and a whole load of other symptoms I had over the years. I honestly thought that I was going through some early altziemers, the brain fog and lack of enthusiasm and ability to have a conversation with people had been incredibly embarrassing at times. I also suffered with floaters in my right eye, the weirdest  headaches, that even baffled the specialists that they decided to put it down to migraines. Then there was the chronic fatigue I had suffered with for years, I constantly complained how shattered I was and was always yawning. Then there was the itching all over my body and lastly the big one, the joint /muscle, bone pains and autoimmune issues. It was the best thing I could have been reading in my currently emotional state. The most exciting part about all of this information, was that it seemed to be once these woman had removed their implants (which is known as an explant) they either had no symptoms or their symptoms reduced dramatically. Dizzy with excitement I immediately emailed Dr X. Maybe he didn’t know about my implants and so he had NO idea…

Hi Dr X,

Something has come to light over the weekend. So 14 years ago I had breast implants. I had them checked 4 years ago and the consultant said they were fine and in his words “if they ain’t broke don’t fix em’, so even though they should have been changed after 10 years I left them.

SO… I have noticed over the last few months that my left breast has become firmer and this weekend, i noticed it’s gone quite hard. So I looked it up and saw this…

FullSizeRender

I am wondering if you have ever heard a connection to leaky/ very old implants that should be removed and autoimmune symptoms?

 I am going to book in to see a specialist tomorrow to have them checked.  It would be great to hear if you’ve ever encountered this before.

 Warmest regards

Abbie

 

 His response…

Hi Abbie

There has indeed been some speculation about implants and the risk of autoimmune conditions like Lupus and Scleroderma but not RA so please don’t worry

 Deflated, dismissed and damn right dis-heartened, I went back to my laptop. His opinion certainly wasn’t going to stop me doing more research into it.  I then stumbled across a website I by a lady called Nicole Daruda. She had gone through similar health issues as me. Her website is called Healing Breast Implant Illness and it was here that I found most of my information connecting my silicone implants and all of my other symptoms, including my autoimmune disease.  Her website was so informative and just full of incredible links to many different other websites and studies that had been done years previously. I also read for hours the comments from other women who had questions regarding their implants and symptoms, it was like reading my story, over and over again. I even posted on there too, I was so desperate to know if anyone else had been diagnosed with RA and it turned out some had, I was exstatic. Nicole  also has a group,  Breast Implant Illness and Healing by Nicole on Facebook. It was a closed page and I was really nervous about joining, mainly because  I had heard about these ‘forums’ and secondly because I didn’t want any of my friends on Facebook to see. But after some consideration I decided to bite the bullet and see what it was all about.  It was predomently an american group, but when I was accepted I was welcomed to the group with many open arms. It was such a wonderful feeling, I was made to feel so welcome. They were full of amazing advice.. I was suddenly part of  this wonderful sanctuary, I wasn’t alone anymore.

I spent many hours on the support group reading other ladies unbelievable and incredible stories. Stories of their suffering, years of illness, numerous trips to the dismissive doctors and never really getting to the bottom of what was going on with their body. More often than not it resulted in an autoimmune issue of some sort. But the best part of this group was hearing the results from the ladies who had explanted. They had found that most of their health issues or symptoms disappeared after surgery. Some instantly, some a matter of days, others a matter of months/years. But still, this was the best news I had read in months. I had such hope for my health. My miserable and depressed spirit had been lifted.

Here is a list of symptoms that have been reported by women with implants… (taken from Nicole’s utterly brilliant and informative website : Healing Breast Implant Illness)

FATIGUE OR CHRONIC FATIGUE

ITCHING all over,  including my inner ear

COGNITIVE DYSFUNCTION (BRAIN FOG, DIFFICULTY CONCENTRATING, MEMORY LOSS)

MUSCLE PAIN AND WEAKNESS, JOINT PAIN

HAIR LOSS, DRY SKIN AND HAIR

POOR SLEEP AND INSOMNIA

DRY EYES, DECLINE IN VISION, VISION DISTURBANCES

HYPO/HYPER THYROID SYMPTOMS

HYPO/HYPER ADRENAL SYMPTOMS

ESTROGEN/PROGESTERONE IMBALANCE OR DIMINISHING HORMONES

SLOW HEALING OF CUTS AND SCRAPES, EASY BRUISING

THROAT CLEARING, COUGH, DIFFICULTY SWALLOWING, CHOKING, REFLUX

VERTIGO

GASTROINTESTINAL AND DIGESTIVE ISSUES

FEVERS, NIGHT SWEATS, INTOLERANT TO HEAT

NEW AND PERSISTENT BACTERIAL AND VIRAL INFECTIONS

SLOW CLEARING OF COMMON COLDS AND FLUES

FUNGAL INFECTIONS, YEAST INFECTIONS, CANDIDA, SINUS INFECTIONS

SKIN RASHES

EAR RINGING

SUDDEN FOOD INTOLERANCE AND ALLERGIES

HEADACHES

SLOW MUSCLE RECOVERY AFTER ACTIVITY

HEART PALPITATIONS, CHANGES IN NORMAL HEART RATE OR HEART PAIN

SORE AND ACHING JOINTS OF SHOULDERS, HIPS, BACKBONE, HANDS AND FEET

SWOLLEN AND TENDER LYMPH NODES IN BREAST AREA, UNDERARM, THROAT, NECK, GROIN

BOUTS OF DEHYDRATION FOR NO REASON

FREQUENT URINATION

NUMBNESS/TINGLING SENSATIONS IN UPPER AND LOWER LIMBS

COLD AND DISCOLORED LIMBS, HANDS AND FEET

GENERAL CHEST DISCOMFORT SHORTNESS OF BREATH

PAIN AND OR BURNING SENSATION AROUND IMPLANT AND OR UNDERARM

LIVER AND KIDNEY DYSFUNCTION

CRAMPING

TOXIC SHOCK SYMPTOMS

ANXIETY, DEPRESSION AND PANIC ATTACKS

SYMPTOMS OF OR DIAGNOSIS OF FIBROMYALGIA

SYMPTOMS OF OR DIAGNOSIS OF LYME DISEASE

SYMPTOMS OF OR DIAGNOSIS OF AUTO-IMMUNE DISEASES SUCH AS; RAYNAUD’S SYNDROME, HASHIMOTO’S THYROIDITIS, RHEUMATOID ARTHRITIS, SCLERODERMA, LUPUS, NONSPECIFIC CONNECTIVE TISSUE DISEASE, MULTIPLE SCLEROSIS

SYMPTOMS OF OR DIAGNOSIS OF ALCL LYMPHOMA

Highlighted in bold are all the symptoms  I have had over the last 14 years! Surely there has to be something in this? Well that’s what I was going to find out.

The first thing I needed to do was get my implants out,  this is called an explant.  I started to look up more stuff online and found a you tube video diary from a lady who was diagnosed with RA . Once she explanted, all her symptoms just went. I found her on Facebook and messaged her with my story, she was so lovely and messaged me back answering all my questions. Her rheumy still won’t believe that it was down to the implants and to this day,  she’s still having check ups every six months to make sure it hasn’t miraculously come back, and of course it hasn’t.

Now that  I was in the ‘know’,  I definitely wanted to make sure that my 14 year old breast implants  were not the cause of my autoimmune condition.  There was no way I was going to sit back and take a chemo drug that made me feel so ill, sick and spaced out  for most of the week and in a state of constant exhaustion, if I didn’t have to.  The thought of being on MXT for the next two years or even for the rest of my life filled me with so much dread that  I would cry for hours on end.  All I desperately wanted was a little support and compassion from my health care providers, but as I knew from my past experiences with Dr X, he wasn’t going to listen and then there was my GP,  who I was convinced thought I was a hyperchondriac. It seemed  the only person that was going to help me,  was my new breasties from the support group and little old me.

The reason I couldn’t go back to my original surgeon to have my implants removed was because he had sadly passed away.  So, the following Monday, I called the local private hospital and set up an appointment with one of their Plastic Surgeons (PS). They had an appointment on Tuesday evening to meet with a lady PS.  My first opinion of her was mixed. She seemed nice but I did have reservations. I couldn’t work out if she was tired, drunk or that was her normal demeanor.  Armed with my questions, thanks to the support group, I set about telling her my current situation.  She didn’t poo poo it, but said that there was no evidence pointing to the fact that breast implants can cause autoimmune reactions in the body. Typical response.  She then checked out my hardened breast and agreed to doing a full capsulectomy. A full capsulectomy is when the scar tissue that has formed around the implant called a capsule, is removed in its entirety with the implant inside. This is exactly what I wanted. Having a full capsulectomy is so important as it makes sure that any contamination in the capsule tissue,  including silicone that may have leaked from the implant,  is removed. It also means you have a stronger chance of a full recovery.  She also wanted to leave my breasts to heal for at least 9 months after the operation before anything else would be done; basically if I wanted  something else put in at a later date.  Before I left,  I asked her if she had ever had a patient that was ill from her implants. She was very diplomatic and said that she had know women to feel a lot better once the implants had been removed. A shred of hope had been given.  My operation was booked for two weeks time and off I went to prepare myself. I was scared, yet incredibly excited about the road to health.

The excitement didn’t last very long.  A few days later  I went to see a friend and told her about what had been going on. When she heard  who was performing my  impeding operation, she screwed up her face in utter horror and declared ‘ I wouldn’t let that woman anywhere near my breasts’. A little unsure by her reaction,  I obviously wanted to find out why?  It turned out that many years previously one of her friends had breast cancer. My PS had done a such a terrible job that she had  ‘butchered’ her body after a mastectomy . I decided to just put it down to a one off,  surely if this PS was that bad, she wouldn’t still be working .. right?

Wrong.  A few days after that,  I went to have my blood test  for my liver function ,  (I was still on Methotrexate) and the phlebotomist and I got talking. Turns out she had her boobs done 10 years ago because one was bigger that the other. Guess who did her surgery.. yes you got it, my PS .  You will never guess what happened, she messed that one up too and my phlebotomist had to sue her! Well its lucky she had already taken my blood, as the rest  drained out of me.  I couldn’t get out of there quick enough. I jumped in my car, sped home, ran into the house, picked up the phone and called up the hospital. Operation cancelled! Two people in less than a week. As far as I am concerned,  that was a sign.

I decided that I needed to see at least another two PS’s to find the right one. I went to London to see the PS that had checked me over 3 years previously and get his opinion. My meeting with him was brief and I felt that he wasn’t overly in tune with my Breast Implant Illnesss (BII) theory.  He stated that there was no evidence to prove that implants cause autoimmune diseases (that ol’ chestnut). He also said that he wanted to refill me with more implants as I would be left with a couple of ‘spaniels ears’ for breasts!  I left his room feeling really angry, not with him but  with myself.  I was so annoyed with my stupidity of putting these poisonous bags  inside me all these years ago. I was so naive in my 20s !

The next day  when I woke up, I knew exactly what I wanted to do and it felt great to have such clarity. I had been given the option to have new boobs put in, but thanks to PS number 2,  I realized that was definitely not what I wanted.  I felt completely at ease gaining a set of  spaniels ears after the implants were removed.  If I had new ones put in, then I would never know if my illness was because of silicone poisoning or not! If I had them out and I felt better and my blood tests (anti ccp count)  started to improve or I magically became the bill of health, I would know that it was the implants all along.

So I did even more research and found two more PS’s that were based near to my family home in Norfolk. I booked appointments with their secretaries to see both of them. I felt that spending the money on finding the right surgeon was really important for my peace of mind. First up was PS numero 3. A nurse showed me into his consulting room at Spires Hospital. He was a very kind looking man and also had a very softly spoken voice. I immediately warmed to him. The first question he asked was, “Are you in good health?”. Of course my answer was a big fat No and I explained my RA diagnosis. He asked me many questions, more than any other PS had asked before. It was comforting.  He then did a thorough examination of my breasts and agreed that I had capsular contracture in my left side. We sat and had a long conversation about BII. He said to me that there was no evidence that autoimmune disease was connected to implant. I politely interrupted him (as I certainly didn’t want to upset him in anyway. He was just such a nice man) and said with a raised eyebrow  “ There is no conclusive evidence”. He smiled and replied “That’s exactly right, there is no conclusive evidence either way and it wouldn’t surprise me if in a few years there is!” We chatted for 10 minutes about macrophages and silcone poisoning. I felt like I was in the hands of someone who wasn’t completely ruling out my theory and in this current climate of ignorance to BII, it was a breath of fresh air. He showed me how he was going to perform the operation and explained about removing the capsule and implant. Then he said something that completely sealed the deal. He told me that if the implants had ruptured and silicone had leaked inside me,  that he simply couldn’t  just  flush it out, its was too sticky a substance and water won’t shift it properly.  He would have to wiped it away carefully, which is very time consuming. He hoped the operation would take no more than 2 hours, however if he had to wipe the silicone away carefully, it may take longer.  His attention to detail ( I was in there for 45 minutes, which is longer than the 20 mins I had booked in) and thorough examination made me want to cry with joy . I had found my surgeon. I skipped out of the hospital, jumped into my car and playing on the Radio was The Kinks – Mr Plastic Man. I took that as a sign from the universe – the deal was sealed.

PS number 4 didn’t really stand a chance, as PS number 3 was such a legend. But I happily went to see her as I had already paid the consultation fee in advance. She was definitely my 2nd choice though and I would have felt just as comfortable with her.

The very next day I called PS number 3’s secretary and booked my appointment. I was gutted as the nearest he could do was April, and this was when I had planned a little fun to celebrate the Big 40.  I had booked for a group of us to take part in the 1980’s iconic game show The Crystal Maze in London.  For any of you that may not know what that entails,  it’s basically lots of different challenges testing your skills, mental and physical ability across four adventure time zones: Aztec, Industrial, Futuristic and Medieval. You win crystals and they add up to time in the Crystal Dome. Basically, its lots of running about and excitement and I didn’t want to ruin my fun by being in pain after an operation.  So, because of the birthday plans it meant that  I would have to wait 2 months to be explanted,  but as the saying goes “All good things come to those who wait”.

May 5th it was.

 

Click here to read what happened next.. xx

 

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