I honestly couldn’t believe my eyes when a lady from Australia posted on the support group a list of chemicals in her implants and wanted to know if anyone knew the heavy metal content in them. I asked her what implants she had and I was over the moon when she told me they were exactly the same as mine. NAGOR TEXTURED SILICONE. The universe heard my plea and I finally had the long awaited list of chemicals used to make up MY implants that had been inside me for 14 years.
Here is the list below and it makes for incredible reading…
The chemical that stood out to me was Xylene. It was 56.5% of part of the implant shell. So it was the first one I googled. I opened a document from the UK Government Health Protection Agency, on general information on Xylene. My draw dropped to the floor.
(Taken from the Health Protection Agency Document)
- Exposure by any route may be dangerous
- Chemical classification: harmful
- Inhalation causes irritation to the nose, throat and lungs
- Ingestion causes irritation of the mouth and throat
- Severe inhalation or ingestion exposure can cause dizziness, headache, confusion, heart problems, liver and kidney damage and coma.
- Irritating to the skin and eyes
Dizziness, headache, confusion!!!!!!! I had those exact symptoms on and off for 14 years.
I then had a look at the US health warnings on Xylene..
(Taken from the US National Library of Medicine Website)
Long-term exposure may lead to headaches, irritability, depression, insomnia, agitation, extreme tiredness, tremors, impaired concentration and short-term memory. This condition is sometimes generally referred to as “organic solvent syndrome.”
Extreme tiredness, short-term memory, irritability and depression!!!! I completely tick those boxes also!!!!
I then looked up Perchlorethylene (PCE). It’s also known as Tetrachloroethylene, a chemical used for…. dry cleaning!
(Taken from the Public Health England Document online)
General toxicity – Tetrachloroethylene is irritating to the skin and mucous membranes and may cause systemic toxicity following inhalation or ingestion. The main target organ for tetrachloroethylene toxicity is the CNS . CNS depression following exposure to tetrachloroethylene is characterised by dizziness, drowsiness, ataxia and dysarthria . In severe cases, coma, respiratory depression and death may occur [1, 11].
Ingestion – Following ingestion of tetrachloroethylene, irritation of the mouth, throat, epigastric pain, nausea and vomiting may occur . In the past, doses up to several grams of tetrachloroethylene were used to treat internal parasites. Nausea, vertigo, inebriation, dizziness, sleepiness and loss of consciousness were reported in patients receiving 4.2–6 g of tetrachloroethylene orally [1, 2]. Vertigo, agitation, hallucinations, drowsiness and subsequent coma were reported in a 6-year-old child who ingested 12–16 g of tetrachloroethylene .
Yet again.. dizziness, drowsiness, sleepiness, vertigo and agitation were all symptoms I have presented in the past. I felt like I had just found the golden key that unlocks the box of answers. Even though this was all a shock, it was such a relief to know I wasn’t going mad.
Fortunately a few months back I had asked my explant surgeon, Dr Haywood, to refer me to the Toxicology Department at St. Thomas’s Hospital, in London. I wanted to see if they could help find out if I had any silicone left in my system after the gel bleed. The appointment can through and it wasn’t October. I knew other ladies from the UK support group had been into see this department previously and it had been an unsuccessful visit for them, in fact frustrating and quite upsetting. Because of this, I wanted to make sure I was going in their armed with as much information and proof as possible. So receiving the list of chemicals that were used to make up my implants two weeks before my appointment couldn’t have been better timing. I had even more evidence to go in there with. In fact, I was so prepared I even sent the consultants an email with a few pieces of information before my consultation, just in case it helped them in any way. I included links to research on ASIA and Xylene that I had found a long the way. I told them that I was obviously not a doctor or medical specialist in any way but I have tried to do my own research in the hope of finding out what is wrong with me. I didn’t want to piss them off before I had even arrived.
Two weeks came around quickly and I was really anxious. My husband was in China and so I asked one of my oldest friends Dawn if she would come along and be my wingman. Since Dr X, I didn’t attend any consultations on my own, especially if they are men.
My appointment was at 2pm that afternoon and as we were shown into the consulting room, we were greeted by a young lady who introduced herself to us. Dr Jr Toxicologist (Dr JT) apologised for not being who we expected and informed us that Dr T, who we were meant to be seeing, was stuck in an airport as his flight had been delayed and she would be stepping in for him. She continued that she would be taking lots of notes and then going over the meeting with Dr T later that afternoon. They would then put a plan of action together and I would know the outcome by the end of the day or the following day.
I was gutted, I had come prepared with a folder stacked full of information on my situation. All my test results from histopathology, my hair mineral analysis results, my doctors records for the last 14 years showing how many times I was in and out of the GPs office (hence why I needed a file!!), a medical report on an autopsy of a women who had 17 year old gel bleed from her implants by Dr Kappel proving that the silicone migrated around her body. Studies on siliconosis and ASIA/ Shoenfeld’s syndrome and not forgetting the list of chemicals. I also had with me a pre failure analysis report letter from Professor P Blais, the worlds leading specialist in failure analysis of medical devices who is based in Canada, stating that my left implant shell surface had seriously eroded, that there had been substantial loss of the textured layer and the patch had debonded on the boundary with onset of cracking. So I would say, I was pretty well prepared, but not for his no-show.
We started the meeting going over my health issues and what had happened during the past year and what had led up to this meeting. She interestingly said that it surprised her that I had been put on methotrexate after a diagnosis of just an anti CCP count as they can be false positives. This was music to my ears, she gained a gold star. She then wanted to go over my medical history. This is where I gave her the low down on all the symptoms I had been dealing with over the past 14 years, the misdiagnosis, the different consultants who never really knew what was causing the problems. We then discussed my families medical history, which was short, as I have a small family. She then asked what I wanted to gain out of the meeting and it was at that moment the tears started to fall. I said that I just wanted to get answers, cross other potential reasons for being poorly off the list. Then if I did have to take an immune suppressant, I would do so knowing that I had done everything I possibly could. Dr JT totally understood, another gold star!
I then moved onto the chemicals listed in the implants. Dr JT wasn’t completely up to speed with this as she told me that she had only scanned the email. She also hadn’t seen my hair mineral analysis report. I gave her the benefit of the doubt as she only knew she was seeing me at the last minute, so she could keep her gold stars. I said that I would like to be tested for Xylene and PCE; as they were the chemicals in my implants that seem to marry up with my symptoms over the past 14 years. Silicone; as it had slowly bled into my body for who knows how long and possibly causing an immune response in my body. Copper; as my hair mineral analysis report showed it was through the roof in my tissues, so to see what was going on in my blood would be also interesting. Platinum; as this is what they use to seal the implants with and may women with faulty breast implants have high levels in their systems. Heavy metals; as you can become quite toxic with them thanks to the implants. I then showed her my report from Professor Blais stating that my implants has seriously eroded and the histopathology report stating I had silicone in my system.
After looking through it all, she said that she would definitely like to get my bloods tested for copper but would have to speak to Dr T regarding the Xylene, PCE and heavy metals testing. In regards to having a silicone blood test she said that there would not be any point in doing so and there is no levels to compare it with. Basically they wouldn’t know if I had too much or too little silicone in my system. She then continued that she thought that all the symptoms I had discussed with her earlier were all relatable……. to inflammation in the body. Migraines, fatigue are all relatable to RA. Dawn quickly added in that my hair had stopped falling out after explant, that I no longer felt dizzy, I didn’t have my crazy headaches and my neck pain had completely cleared up . Her response was that she totally understood where we were coming from but my body was probably in a state of inflammation for years, you can have all these symptoms but they don’t manifest into something bigger for quite some time. UNBELIEVABLE!! I mean.. FFS!! Those symptoms of fatigue and headaches are RELATABLE TO LOTS OF CONDITIONS. FACT. Its this guessy diagnosis shit that really fucks me off. Instead of thinking, what an admirable lady to really see what is wrong with her before she takes a medication that costs the NHS a whole heap, lets see if there is something in what she is saying.
To add insult to injury she continued to ask me if I had any aftercare since the operation whilst circling the palm of her hands around her breast area. “what do you mean?” I asked her. “Have you had any councelling to help you deal with losing your implants and your body image?”
I quickly responded that my ‘new’ body image was not an issue for me. My main concern in life was to get better, not how I looked. That ‘aftercare’ isn’t something that I needed. That my anxieties are all related to my current situation of not wanting to take a chemo drug that I may not need. What I should have said is.. how does this relate to taking some blood and urine to test me for chemicals?
It was wrapping up the consultation time. Dawn and I had been in there now for around an hour and a half and we seemed to be getting nowhere. Dr JT confirmed that she would be speaking with Dr T and getting back to me within 24 hours to let me know the outcome and that she was sorry I didn’t get to see him personally. She then said….
“If you can, try and keep a positive mental attitude about it all, it helps more than you can possibly realise”.
Now I agree with her there.. PMA is something I have practiced in my life for years, some people even say I am the most positive person they know, always finding a positive in everything. So I agreed with her and told her that she was completely right, it really does. She continued…
“A positive metal attitude can really help the situation and I hope you do not find me patronising saying so”
Hmmmm… it was her tone of voice that was starting to grate. It was…. patronising! But she didn’t stop there and she really should have…
“When you have a chronic disease a positive mental attitude can really help you deal with it mentally … I hope you don’t mind me saying that”.
BOOM… all gold stars gone, in fact honey, you are in the minus for the gold stars now. YOU OWN ME GOLD STARS. Having someone who is at least 15 years younger than you, with less life experience, who has obviously NOT gone through ‘tougher times’, telling you to remain positive about a ‘chronic disease’ you don’t believe you have, is a massive NO NO in my book of life. Also, lets just rewind this shall we, you have JUST NEGATED YOUR POSITIVE SPEECH BY ADDING IN A NEGATIVE!! See… so much to still learn bless her.
I left the consulting room with heavy heart, in a nut shell her prognosis were that all my symptoms were relatable to my chronic disease. Thanks Dr JT!! Great job *thumbs up* . If Dawn hadn’t have been there I think I would have just sat in a loo cubical and blubbed for a while. But the fact Dawn agreed with me, (Dawn totally tells it like it is), was a relief. I just had to wait until tomorrow to find out my fate in the toxicology department and if they would run any tests on me. I still had hope, all was not lost. PMT.
The next day I got a call from Dr JT. It was bad news. They were not going to test me for anything. Not even copper. Dr T didn’t see any point as there was nothing to analyse it against. I was fuming. How could I have turned up with a whole heap of evidence that I could potentially have toxic chemicals leaked inside me from faulty breast implants, presenting symptoms that match and not get a single blood test??!?!?!
I was then offered to have a phone consultation or a face to face with Dr T again if I so wished. Which I did. I said face to face, as phone calls are never the same. I also asked her if they knew of anywhere private that I could get the tests. She said she would go and sort out my appointment and find out if they knew of anywhere private and call me back in a short while.
I text Dawn and filled her in on the outcome. She was as pissed off as I was. Within 10 minutes she had sent me a text with a private clinic that provides blood tests for Xylene, Platinum, Heavy Metals and Copper. I couldn’t thank her enough.
Half an hour later Dr JT called back and said that I wouldn’t get seen until end of November!! It was now mid October. But I graciously accepted, as I definitely wasn’t going to have a phone consultation. She then told me that they didn’t know of any private clinics that could do these tests. It was wonderful to corrected her and say that a friend had found somewhere for me to be tested in between our phone calls. She stumbled and replied that they where unaware of anywhere and ‘good for me’. Wrapping up the conversation she said…. “Take care of yourself Abbie” in her special caring yet completely patronising tone and I knew at this point as my blood boiled and my face got redder, I had to say something.
“Can I just say something before you go, I completely understand your comment about positive mental attitude, I have been a strong believer in this for years. But when you are telling someone to have a positive mental attitude and then continue the sentence with the words chronic disease, you plant a very dark seed and it is not positive at all. You should be careful what you say to people”
It felt AMAZING… I had finally spoken up for myself. I was always worried it would affect the way they would help or deal with me, but I honestly am done with all this crap now and I am gonna let them bloody well know about it. So much so that I sent the following email that afternoon (with a little help from my lovely friend Lucy).
Dear Dr T,
A further appointment has been made in the Clinical Toxicology Clinic for 26 October 2016Please let me know if this is not convenientYours sincerely
Wow.. I was now going back to see him in less than two weeks!! I replied to the email confirming the appointment and that I looked forward to receiving correspondence from Dr T regarding the outcome of my first appointment with Dr JT, so I am fully prepared for this consultation. I am still awaiting a response.
I have made the decision though, to hold off any private blood tests until I see Dr T in two weeks, just in case he has a change of heart.
To read my next instalment click here….. thanks for your support xx