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Thread: newbie and now surgery? (long)

  1. #11
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    Default okay, now i'm REALLY confused

    Thanks for making me feel so welcome, ILoveHistory. And I love history too!

    Ruth, gosh -- and I thought I had problems! ops: 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! ). 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...? ops. 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...!

  2. #12
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    Planetary Child,

    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!

    Ruth

  3. #13
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    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

    Terry
    Fair Oaks California

  4. #14
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    Default update

    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.

  5. #15
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    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!

  6. #16
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    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
    Fair Oaks California

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