View Full Version : newbie and now surgery? (long)
05-07-2007, 01:36 AM
I've been skulking around the boards for a few weeks, too disjointed in my thinking and too exhausted in general to actually express myself. Then there was the whole matter of finding a username that didn't emphasize my own personal loopiness (which seems beyond ridiculous at this point), since I gather so many of us feel the same way anyway. At any rate, I finally found the energy and the courage to write you all.
My diagnosis was almost two years in the making. I noticed the brain fog first, since I was in grad school and really needed to have my wits about me or I would miss critical deadlines. I'd literally read a book one day and forget it in its entirely (including its title) the next day. That ended up being a colossal disaster for my work and personally very traumatic to me, since I had always wanted to be a professor. And in literature (my field), either you remember what somebody wrote or you don't -- so I was pretty screwed. Then I developed a lot of abdominal problems. Eventually I couldn't move my neck (and the pain in my joints had become excruciating) and went to see my GP, who told me that I had tested ANA positive and possibly had lupus. The months that followed were a particularly gruelling time, as I was shuttled from one rheumatologist after another, and eventually to a set of neurologists.
Essentially the problem with my diagnosis was that my ANA was always a high positive (eight times in a row), but the blood pattern was always centromere, which usually indicates CREST scleroderma. But the problem with that diagnosis was that I didn't have any CREST symptoms except for Raynaud's phenomenon; my rheumies also felt that my symptoms were more "lupus-sy" in nature. Still, they concluded that all eight tests were false positives, and packed me off to a neurologist, who did MRIs, spinal taps, etc, etc, after which he concluded that I needed to see another rheumie. So I did.
My new rheumie thinks my blood work is atypical and doesn't match my symptoms because my lupus was induced by my saline breast implants -- in other words, I apparently have breast implant disease from silica adsorption. I couldn't understand it at first because my implants aren't silicone but apparently saline implants are also contained in a silicone shell, which can induce autoimmune diseases in some people. Of course it's my fault for having had the implants put in in the first place, and I take full responsibility for having done something so stupid and totally unnecessary. But I will add in my defense that I was actually quite careful about researching all this and could find little info on the dangers of saline: as a matter of fact, as far as the FDA was and is concerned, saline implants continue to be safe. My new rheumie disagrees, and wants me to have them removed ASAP. Unfortunately there is no way to test for silicone antibodies/sensitivity because apparently the science is not yet sufficiently evolved.
I am really very sick right now (at this point there is no doubt that it's lupus since the malar rash is pretty prominent and I have all the 11 criteria now) but have gone to other rheumies recently to get second and third opinions. Unfortunately, one set of doctors say that it's likely that there a connection, while another set says that there is no actual proof of any connection and that "siliconosis" does not in fact exist. So I am a little flummoxed here, as you can all imagine. Naturally I am worried about having the explant done because I am sure I will develop another horrible flare (and why put my body through that unnecessarily?); on the other hand, if there is even the remotest chance that my lupus will be less severe, I am almost ready to take any chance that is offered to me. Of course, my rheumie says the lupus won't go away completely, but it will at least be a lot milder. To answer someone's question about what aspect of lupus I would like to see some research on, I would really appreciate more funding and research on this possible link!
Anyway, my surgery is scheduled for next month. Do you think I should go ahead and do it?
Thanks so much in advance. This site has helped me more than I can say.
05-07-2007, 03:42 AM
Welcome to the board Planetary Child! I hope that you enjoy being here. I am so sorry to hear about your problems, I hope & pray that things get better for you! I don't know anything about implants, I wish I did so I could give you some good advice, but I hope you know you are in my thoughts and prayers
05-07-2007, 05:56 AM
ive started a poll that might help you, before your post I thought one of the constants of this disease, was that a cause couldnt be pin pointed, Im not a Dr and i try not to give medical advise, this is just a consideration point
05-07-2007, 06:31 AM
Hello. PlanetaryChild. I wish this were an area where we could help you more - but as you probably know, most of the studies out there focus on silicone implants, not saline. So there is relatively little clinical evidence available.
As far as I know, there has only been one study done on whether women with rheumatologic symptoms improved after removal of implants. This study was conducted by Dr. Noreen Aziz at the University of South Florida Colleges of Medicine and Public Health. She found that 97% of the women with pain and rheumatologic symptoms improved after their implants were taken out and not replaced. Symptoms improved or disappeared completely over a period of months. However, in this study, 96% of the women who did not have the implants removed found that their symptoms got worse. However, the study involved a fairly small group of women, and not specify which types of implants were involved. So it is not by any means a definitive study. And I have not seen any type of long term follow up or other studies to confirm that these women's improvement was permanent.
Have you asked your current rheumatologist about the basis for his conclusions and recommendations? Is he basing his opinion on clinical research and studies, case histories, anecdotal evidence, or just his own theories with no clinical evidence? Is he aware of the Aziz study, or the studies done by the FDA and the National Cancer Institute (you can get more information about these studies at www.breastimplantinfo.org)? Have you also researched his credentials - board certification, publications, malpractice history, and so on? I think all those things would affect how much weight I would give his recommendations.
I'm sorry you are facing such a difficult decision with so little real information available to you - it must be incredibly frustrating. But ultimately, you have to do what you think is best for your body. Trust your instincts - what are they telling you about what to do?
05-07-2007, 11:26 PM
Hi Ruth, Terry and MaryCain --
Thanks so much for your kind responses.
Terry, thanks also for setting up the poll. I agree that the notion of being able to identify the "cause" of a lupus case is practically unheard of: most rheumies would probably concur that the exact aetiology of the disease can't be definitively identified at this point anyway. But what my rheumie actually said was that I was born with a natural predisposition for autoimmune diseases and that the presence of the implants (as a foreign body emitting silica in my system, to which I could be allergic) catalyzed or exacerbated the onset of the disease. In other words, another (hormonal, genetic or environmental) factor (i.e. toxin) could equally have done the same thing. So, while the majority of women tolerate saline implants, it happens to be my "bad luck" that, because of my specific predisposition, I don't.
MaryCain, thanks for your very thoughtful points. I actually AM having a problem with my rheumie right now because I questionned everything he said and asked for some empirical evidence that would back up his claims. I thought I said it respectfully but I guess he doesn't like to be questionned in general. He said that he's been doing this for over 32 years, has treated hundreds of women with this problem and has helped a lot of women win litigation cases in the class action suit against Dow Corning, etc, etc. But I still asked for some studies to read and he just suggested that I contact toxicdiscovery.com, which I did, but I couldn't find that many studies that backed up their position. When I asked to be tested for silicone antobodies/sensitivity, he got very frustrated with me. Apparently, none of his patients with this problem had ever asked for this kind of thing before and I should just BELIEVE that he knew what he was talking about because of his considerable experience. But all these questions had nothing to do with disrespect on my part: I was just trying to be vigilant and careful about my health since it's MY BODY after all, isn't it?! I just felt that I should be entitled to ask these questions without being shut down. Since he takes my insurance and the only other hospital that does is Bellevue H in NY (where I've had awful experiences and never want to go again), I feel like I'm kinda' stuck. Plus, when you only get six minutes for your appointment with the doctor, there end up being so many other medical issues to discuss besides academic papers.
I did research him -- no malpractice suits. But I WILL be shelling out $550 to see another (very respected) rheumie on Wednesday to get a second opinion. I'll let you know what he says.
I'm sorry to be going on about myself at such length. I was just wondering if anyone else has had any similar experiences...?
P.S. Ruth, thanks too for your prayers!
05-08-2007, 04:08 AM
Dear Planetary Child,
I hope your visit with the Dr goes well, Its always good to give a second opinion.. What your Dr said about the implants making you more susceptible does make sense. About 8 1/2 years ago I had several brain surgeries (long story) anyways they implanted a shunt (its almost like a straw that goes from my brain to my stomach) it regulates the pressure and amounts of fluid that I have in my brain. Anyway after I had my surgery I had lots more lupus symptoms and such. My dr at the time said that having a foreign object like that put me at risk for problems. I'm not entirely convinced that he's right. I think the surgeries just exacerbate an already exisiting problem
A word of advice on surgery. I had 2 brain surgeries in the past 2 months (its an ongoing issue), make sure that your dr knows all of your lupus problems, and all of the medications that you take. Drs can be terribly concieted at times, but sometimes you need to tell them the way that things are. The neurosurgeon I went to last time came highly reccommended but he doesn't recognize Lupus as a real disease and consequently didn't pay attention to any drug interactions that may happen (oops).
Pay attention to what your body tells you, Our bodies have a great way of signaling when we need help. Good luck! Keep us posted on how things turn out!
05-08-2007, 12:21 PM
Several brain surgeries -- gosh! :shock: Is your story posted elsewhere, Ruth? I'd be really interested.
Your experience is exactly what I'm wondering about. I agree that the shunt may have exacerbated an already existing (dormant? prodromal?) case of lupus. Question: what exactly was your shunt made of, do you know?
05-08-2007, 02:16 PM
Welcome to the Forum! :D I'm really glad that you found us! :D
Please just know that anytime you need advice, support, information or just to vent or chat, we're all here for you!
I'm SO sorry to hear that you are going through such a difficult time at the moment, but please know that you are in my prayers.
Keep well! :)
05-09-2007, 03:50 AM
The shunt is actually silicon based, but I also have titanium plates in my skull now as well. I haven't been able to read any research linking either substance to Lupus, my personal belief is that once a foreign object like a shunt or an implant enters the body the immune system goes into hyperdrive to attack it, which brings on the lupus symptoms. I know that my lupus is much worse right now right after 2 surgeries than it usually is. Anyway as for my surgeries I had an accident when I was 18 (I am 26 now) and the drs did a CT Scan and an MRI they found a cyst in my brain that was growning at a very fast rate, so I had several surgeries to remedy the situation. It is far too large to remove and it is smack dab in the center of the brain so it makes operating on it much trickier, so that is where the shunt comes in and it drains off the excess fluids and regulates the pressure in my brain. The problem is that having lupus your body turns on itself and alot of times goes after your weakest spots, which for me is my brain. So I have developed leisons on the brain and all sorts of other issues. Recently we discovered that the lupus had attacked my shunt rendering it useless so I had to have surgeries to replace it. The Drs say it'll be an ongoing thing in life just because my body cannot accept a foreign object in it. Good luck! Keep me posted on how everything turns out!
05-09-2007, 09:21 AM
I am SO sorry to hear about your neurological problems! :cry: Please know that you are in my prayers...
05-09-2007, 11:38 PM
Thanks for making me feel so welcome, ILoveHistory. And I love history too! :)
Ruth, gosh -- and I thought I had problems! :oops: Mine seem so trivial compared to yours... What a difficult situation to be in -- and for the rest of your life too. You must be very brave.
After reading your note last night, I thought about it a lot and was convinced that you had a point there. So I went to see that big-wig doc today already leaning towards the idea that doing the explant might be the best thing to do. Well, I know the session cost me an arm and a leg, but it really felt worth it (you get what you pay for, huh!) in the end. The guy spent almost two hours with me today, carefully reading my blood work, examining me physically, reading all my answers to his ten-page questionnaire, and taking careful notes of all my responses (I was in heaven! :D). His conclusion? That I have lupus because I have lupus and there is no proof or indication that the implants have anything to do with anything, that suggesting that an AI disease has a *cause* is more than slightly problematic. And apparently he has seen quite a lot of cases of women who did have explants but who didn't get better afterwards. So he strongly recommended that I NOT do it, particularly since all the scraping out of the scar tissue can be unusually invasive and I am already having clotting problems. His suggestion is to wait and see how well the Plaquenil works (I've only been on it for about six weeks), and to take the Pred when i'm flaring. If, after six months or a year I see no improvement with the meds, I can re-think the issue again. He says I can always do the explant later if I want to.
So, as I said, I'm even more confused right now. After talking to him, I started thinking that maybe Terry did have a point (aren't I starting to sound a little flaky here...? :oops:). But I just don't feel equipped in terms of training to answer this question either way! But what I did like about his position was that it was not absolute and it was actually fairly conservative -- i.e., I don't have to make the decision immediately because it's not as if my lupus is going to get radically worse (necessarily) if I don't have the explant right away.
Ruth, do you have a bad problem with brain fog and cognitive dysfunction, etc? Mine is terrible and I've had to go on medical suspension as a result of it. He says that my brain MRI seems to indicate that there is some white matter in my brain and that I may have CNS lupus; do you? Do you know that there is a medication he says I might try that would (could) significantly help with the brain fog? I'll let you know what it's called (and what it's like) if and when I start using it. Meantime, please keep us posted on your surgeries and your health in general!
Okay, must stop here -- don't want to develop the reputation for being the newbie with endlessly long posts...! :wink:
05-10-2007, 03:30 AM
I am SO glad to hear that you went to a good DR! He sounds like a Dr who will make sure of all of the options before jumping to operate. Operations are tough things, the only reason I ever do mine Is becasue I have no choice. That is interesting what he said about implants and explants, I can't really see either causing lupus, but I think they can intensify symptoms. I know for me my last surgery was really rough because I had to go off all of my Lupus meds for the surgery. I don't know if that would be the case for you, but the withdrawl can be something fierce.
You have a tough choice with surgery, I don't know what I would do if I were you. I am very luck in the sense that what is wrong with me I can see in black and white on the x-ray and my surgeries have never been the elective type. It didn't sound that your Dr felt that explants would help. I hope that they are able to find some treatment that will help you.
I do have CNS lupus, and some cognitive disfunction. Most people never notice and just figure I am scatterbrained. I have horrible brain fog at times which is frustrating. Are you seeing a good neurologist? I have lesions on my brain (lots of lupus sufferers do). Those lesions are definitely things to me montiored.
What symptoms are you experiencing? The thing that was so frustrating to me is sometimes the Dr doesn't take you seriously about this issues and will attribute it to you being hormonal or dingy. If you feel that something is abnormal than it is, and you'll always be the best one to read your body's symptoms.
Keep me posted on how everything turns out!
05-10-2007, 05:49 AM
no you dont sound flaky, doctors sometimes need to be questioned, they'r just like us and want to cure their patients so when they come up agaisnt something the cant cure sometimes they start pulling at strings, dont get me wrong i dont know if your primary care is right or wrong, thats a decision you'll have to make, i guess at some point in time we all have to make them especially when it comes to meds and surgeries, just yesterday i put in for a consultation with a private practice neph. just to make sure things are going in the best possible direction with me.
drs egos sometimes come into play here, keep that in mind, but dont let it influence your decision
05-16-2007, 01:18 AM
Terry, you're not kidding about those doctors' egos! The rheumatologist and surgeon who wanted them out are now really pissed at me for not going ahead with the explant (for now) but, jeez, it's my body, isn't it?! :x But is everything okay with your kidneys, T? The blood work is going to be expensive but sometimes going private can be totally worth it.
Ruth, I used to have a photographic memory and now my brain is just plain... MUSH. :cry: I sometimes forget my own phone number or what errand I'm supposed to be doing. But it's been particularly bad for my academic work (I forget what I just read, :shock: , which is awful since reading can be a lot of work sometimes! :( ); thankfully, I've been put on medical suspension for now.
Interesting about the white spots, though. My neurologist (not too crazy about her) was worried I had MS, so that's what the technician doing the brain MRI was looking for (happily I didn't have it). But now the expensive private rheumie wants to see the actual DVD of the MRI just to examine the white spots since he seems to think I may have CNS lupus. I guess that's one reason I can barely move my neck? Anyway, I'll let you know what he finds.
Meantime, I'm not gonna do the surgery for now and will try to see if I improve on the Plaq.
Thanks again, guys.
05-16-2007, 03:22 AM
I am sure rooting for you! I am glad to hear that you don't have MS, the doctors worried about that with me too. So many times my brain is just mush, but I've learned to conceal it better and I am sure you will too. I hope that the plaq helps, its supposed to really improve things. Keep me posted!
05-16-2007, 07:05 AM
stay in touch, we'll be here waiting for your return, it sounds like that theumy you see, even tho expensive is a good dr