About three weeks ago, my mom started having really bad back pain, as well as pain in her left hip and leg (the one on which she had the surgery in January), and around the incision she had from her leg abscess draining operation in Jan. Just all of this out of the blue. Yesterday she asked me if I could look at the incision scar and tell her if it looks swollen. I told her that I would, but I don't know if I can tell since I don't know what it usually looks like. She is having pain in the area around it as well, esp. if she touches it. It's just been getting worse since then. She's been taking Vicodin for the pain but it is not working as well as it was when she started taking it. I talked to her tonight and was ready to take her to the hospital. She said that she would be okay; that she felt like the Vicodin was starting to kick in, but for the past week or so she just hasn't seemed like herself. She told me that we'd see how she felt tomorrow.
I took her to see her primary care physician about a week after she had started hurting (so two weeks ago). She was also complaining of some abdominal pain along with the back, hip, and leg pain, but nothing major in her abdomen. Her emphasis was on the throbbing pain in her back and hip, and down her leg. So the fucker ordered a CT scan of her abdomen and said her back might be arthritis. No back or leg x-rays. I wish I would have been more proactive and told him to do some leg and back x-rays. I did mention this but he seemed more concerned about her abdomen. I asked him if the CT scan would show anything in her back and he said probably not. WHY NOT CHECK HER BACK TOO??? However, he did have her get some blood work done.
No one ever called me about the results of the blood work. I HAD TO CALL THE DOCTOR MYSELF to find out the results. I told the P.A. how much pain she was in and she said she'd talk to the doctor. When she called back, she said that my mom's calcium levels were up again and the doctor thought that might be causing her leg pain…this is all STILL due to her thyroid. I swear, just like before, this fucker keeps dragging things out and sending her to test after test while being in TONS of pain and taking tests that probably won't reveal anything useful. She had an appt. with her ENT about her thyroid and blood tests and the P.A. told me just to keep that appt., which was this past Monday (the 18th).
About a month or so ago, she got a nuclear scan of her thyroid. We were never notified of the results. I finally called her ENT and the P.A. told me that she would call me back after she talked to the doctor. She called me back and said "everything seemed normal." That was NOT a good thing. She basically told me that they didn't find anything abnormal.
So when we saw the ENT, he told us that the scan did not show the parathyroid, which was what he was looking to remove. This means that he can't see it, so he doesn't know where to go to remove it. He recommended AGAINST surgery. He said that the risks would outweigh the benefits. He told us that the surgery would involve him having to go in and look for the parathyroid, which he might or might not find, and might end up severing nerves in her vocal cords, causing her problems in talking and other problems with her throat. He said to just keep an eye on her calcium level, as it was at a "borderline" level, and she should her endocrinologist every 6 months.
KEEP AN EYE ON IT? EVERY SIX MONTHS? Obviously she is GOING TO GET WORSE. She is not taking anything to make the calcium levels decrease! So we are pretty screwed either way…if she wants to do the surgery, the doctor said it would be VERY risky, but if that's what she wants, he'll do it. If she just keeps an eye on her hormone and calcium levels…in between the time that she sees the Endo, she could get worse. She could start losing weight and getting sick like she did before she went into the hospital in January. She is obviously healthier now than she would be if she started getting sick. Her weight is back to normal and she doesn't have too many bad symptoms yet. But if she gets sick because of the parathyroid and the calcium levels, that's probably when the ENT would decide to remove the thyroid! When her immune system is incredibly compromised?!?! What do we do? Either way there is a HUGE risk. I have been such a mess…so worried. One of the reasons I have not been very active lately. I've been taking her to one or two appointments every week it seems. I am just SO PISSED OFF at how slowly this shit is moving. WHY DON'T THEY TAKE THIS SERIOUSLY? This is JUST LIKE last time. I don't want her to get that bad again. WHAT DO WE DO???
As for her pain, I told her to call me any time…even in the middle of the night…if she starts to feel worse. She has been so depressed. I really haven't written any updates on her because she was doing SO well. For probably at least one month but more like two, she has been VERY independent…walking without her walker, able to go shopping and cook and clean. And then this pain struck and her fucking doctor doesn't seem to be that concerned about it. When I talked to her tonight she sounded awful. She is starting to sound like she did when she got sick. Delirious with pain. Like the pain before was due to that leg abscess, and I'm sure her kidney failing and problem with her gall bladder didn't make her feel any better.
She seems to be to be exhibiting some of the symptoms that she had when she started getting sick in Nov. 2005…VERY tired all of the time…all she wants to do is sleep. Hot flashes. Loss of appetite. When I mentioned that to the ENT, he said that the thyroid would not be the cause of that. WTF??? I've heard the opposite from the Endo, her PCP, and from what I've researched online.
When her calcium level was elevated before, it fucking made her kidney fail I'm sure, and the thyroid problem is what produces the excess calcium. When I talked to her tonight she said it was hard for her to eat…that she felt nauseous every time she ate, but hasn't vomited yet. She was to have a CT Scan for her abdomen tomorrow which requires her to drink some barium tonight and some more an hour before her appt. tomorrow. She said that she felt like if she drank it, she'd throw up. I told her not to drink it and that I'd take care of canceling the appt. She didn't seem to understand that right away. I asked her about going to the hospital and she said I'd be there tomorrow to take her to the CT Scan appt. and we could see them, and I reminded her that I was canceling it. She either didn't hear me (she has a hard time hearing), or just can't really comprehend much because she is in so much pain.
I feel so helpless. She just kept telling me, "It hurts so much," and she sounded on the verge of tears, and there is NOTHING I can do. I would do ANYTHING to take away her pain. I would take it from her and put it onto myself if I could. I don't know what to do. She shouldn't have to go through this again. The fucking medical "care" she is receiving is BULLSHIT!!! I just don't know what to do. I know I keep saying that but I just don't. I don't know what else to say. She was one of the HEALTHIEST people I've ever known, and than last Nov. 2005 she started getting incredibly sick, losing all that weight, barely being lucid, sleeping all the time, etc. I don't want that for her again. I just…I feel so helpless and confused and scared. I feel like I'm not doing enough for her. Thanks for listening.
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