Breast Biopsy Marker Clip Allergy
I hope this day finds you well and I appreciate the existence of this board! It is such a nice resource for people to talk to one another. I am hoping maybe someone here might have some information on my weird health issue. It sounds outrageous, so please keep an open mind.
I have a breast biopsy clip marker that has been causing me to have horrible allergic symptoms for the last two years. Before it, I was fine; Now, I have lost my voice, gained weight, can't tolerate direct sunlight, have severe Raynaud's with capillary dropout, have more-frequent migraines, and have daily symptoms of shock (orthostatic hypotension, vision going blank, vasodilation). I know the marker is either stainless steel or titanium. I think the doctor said it was stainless steel.
Unfortunately, the office that put it in will not give me the serial number. The lady there claims they don't keep a record of it which I believe is a lie. The maker has not either and they will not give me the e-numbers of their stainless steel or titanium. The lady there says, "I don't think our titanium has an e-number" (Probably the tenth lie I've heard about this - all alloys have e-numbers). I am thinking of placing a Freedom of Information Act request about it. I have been to the hospital that placed it now four times and also called many times with not one returned call. So, the saga of the mystery clip continues...(today's forecast - cloudy with a 100% chance of lies and disregard).
I am furious with the doctor's office and the marker-producing company. It just seems like they should want patients to be better - not just try to save themselves and hide their mistakes. By way of ignoring me and getting in the way of my progress towards its removal, they are prolonging my suffering. The doc I found might take it out but only if he has the serial number and a positive allergy test. The allergy test will cost me 400.00 out of pocket and all of my other medical testing trying to figure out if something else is wrong is well over 10,000 so far - at this rate I will never own a home.
Hopefully, this doctor doesn't change his mind about taking it out after I have the test. I just can't afford any more consults. Too bad for me there is no allergy test solution for titanium (that I know of - not that I could afford it anyway). Hopefully, the doc will accept the fact that most all titanium contains nickel if he won't take my word that it is stainless and I never get that answer. Alloys are mixtures. The marker company secretary said they thought they usually sell the titanium to the doctor who put it in. I think that was a lie to try to brush this nightmare under the carpet. Titanium is supposed to be safer for people with nickel allergies. It is not supposed to slough off as much. I am fairly certain the doctor said it was stainless steel. But, having just had a drill going into my breast, I was pretty woozy.
At any rate, I am VERY allergic to stainless steel and nickel. Zippers give me hives and boils, I can't wear bras because of the metals - they excoriate my skin. I don't know about titanium (It likely has nickel), but I also react to silver and gold. Since the marker was placed, I have had nothing but mast cell degranuation, vasodilation, allergy attacks, dermatographism, hives, asthma, signs of anaphylaxis, and increasing food sensitivities. I have also gained 15 lbs and my hair started turning grey the month it was placed. I can no longer go into the sun without vasodilating, becoming hypotensive, and getting such brain fog, and I could swear, as a healthcare worker, that I am having symptoms of encephalopathy (probably due to nickel causing an increase in my Reactive Oxygen Species (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3172618/). This also often happens when I exercise or am around any type of latex. Some doctors don't believe me (AKA have no idea how to treat me) but the shock symptoms are most definitely from mast cell degranulation. I am on claritin, zantac, cromolyn, zatiden, benadryl, nasal & broncho-steroids, and I carry 3 epipens everywhere. The histamine literally irritates me from the edge of my skin to the core of my bones.
I am and always have been a very allergic person (I almost died from Ceclor). In addition to this, I have HLA-DQ8 and am sensitive to gluten and latex. Many people I know with latex allergy are also horribly allergic to nickel. I think there should have been more warning about the clip from that standpoint. There should be a MANDATE for metal testing in people with a history of atopy (allergies, bronchitis, eczema, latex allergy, metal allergies) before any type of metal implant. The worst thing is, the clip was inserted right next to my skin (it was very easy to find/see this lump). In other words, it was a useless moneygrab. My quality of life is so poor compared to how it used to be. Now, I constantly wonder if I will die of anaphylaxis before I can even start a family.
To make matters worse, according to a mammogram this week (100+ miles away from home where they actually accept my insurance), the clip has migrated to near my chest wall. A 2011 paper about this particular type of clip indicates that is a frequent migrator. So, when I do get it out, I am looking at general anesthesia according to most recent opinion. I am praying so hard this doctor doesn't change his mind or back out on a technicality (i.e. saying nickel isn't stainless steel or titanium). Here's hoping the Hippocratic Oath wins in this case.
This horrendous experience has led me to believe there should be a couple of fail safes for us women going through these burden of proof/medical record nightmares when dealing with difficult health issues. I think there should be a online database of all medical devices ever placed (down to markers/clips - everything!) so that patients can get that information from any doctor to ensure patient safety (in the event that an office decides to conceal that info or ceases to exist). It might also be nice if there were a database dedicated to women's breast issues so that we don't have to go INSANE when we try to go to a different doctor to consult. The red tape with that is outrageous. Women die as a result of this - especially when they are dealing with offices that have poor communication who will not release pertinent information. It makes me so sad. Sometimes, it seems like the design it so you can't transfer the information elsewhere.
I don't want to scare anyone here. I am pretty sure this allergy is an EXTREMELY RARE OCCURRENCE. I am not suggesting that clips are bad or should be removed. I think they can be very good and that most types of clips probably stay where they are placed. I can't reiterate enough, in people with a history of atopy, there needs to be allergy testing first. I question all the time if this will be the death of me.
I would like to know if anyone else here has had to get a clip removed as a result of an allergy. If so, how did you convince the doctor to remove it? Was it done under a local or under general anesthesia? Were you diagnosed with systemic nickel allergy syndrome? Did you have chelation therapy afterwards?
If anyone has any ideas for ways for me to go forward and pursue removal, please share them.
I don't want to hear that it is not possible that I am allergic to it - I AM! On a similar board, I saw lots of posts to the effect of titanium/stainless steel is 'inert.' I wish that were true but basic chemistry tells us that metals are catalysts. Enzymes and proteins pick them up and carry them around and sometimes use them for bad deeds as far as chromosomes and other proteins are concerned. There is an innumerable amount of medical research (sometimes German, Japanese, or Norwegian) which has found that metals from implants wind up other places in blood, albumin, and connective tissue. My clip is very proximate to a lymph node. (If I could go back, I would not get the marker since mine was close to the skin. If I had a deeper tumor, I would demand a pure titanium clip but this is from my vantage point of extreme stainless steel and nickel allergy).
Any positive advice would be greatly appreciated. Feel free to PM me. I will go anywhere in the continental US (or maybe Canada or Mexico) for this procedure if I can just find someone who will do it soon (I am sick of paying consultation fees out of pocket only to be told no - I could probably spend over 10,000 more that way alone). It would also be nice to find someone with experience in it too.
If you got this far, thanks for reading.