Viewing 15 posts - 1 through 15 (of 21 total)
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  • barbra
    Post count: 160

    Hi guys and gals,

    I haven’t communicated on this forum for quite a while. I have been feeling well, until about 6 months ago. Actually, I am feeling quite well now. My TSH swung up and down a bit but no big deal, I eat well, sleep ok, the ten pounds I gained come most likely from eating everything that can’t get away fast enough – just one little problem: The very small goiter that I had is slowly growing, together with two nodules, which now makes it impossible to lay on my back and is starting to impede my air supply. My throat feels dry and makes me cough.
    Since I had radiation done on my thyroid back in 2013 it is supposedly dead. According to the latest Ultra Sound and a scope with camera inserted through my nose by an ENT, no thyroid tissue remains on my right side. Left side, though, is presenting a problem. Could be cancer, could be something else.
    So, I am scheduled for a total thyroidectomy on the 16th of next month, and then I will know what’s going on. Don’t know what or how much they have to remove, I hope we are not talking para thyroids or lymph nodes. Like I said, I just have to wait and see.
    It seems like the days are crawling along, the waiting makes me nuts.
    Fortunately, I have no eye involvement.
    I will be back after all this is over and fill you all in, hopefully, my whining days are still behind me [oh, and I do remember you Shirley, Sue, Flora, Kimberly … and those days, and I still thank all of you for your support].

    Wish me luck.

    Barbra.

    AzGravesGuy
    Post count: 160

    Hey Barbra!

    Welcome back!

    That’s awesome you still feel good with something going on in there. It may take a few weeks post surgery but your throat will feel so much better with it gone for good.

    I wish you the best of luck for a safe and successful surgery.
    Let us know how it goes!

    Rob

    Kimberly
    Online Facilitator
    Post count: 4262

    Glad to see you back, but sorry for the circumstances! Hope that all goes well with the surgery…please keep us posted!

    emmtee
    Post count: 148

    I wouldn’t worry too much about the parathyroids since it sounds like they’ll be focusing on your left side and won’t be bothering your right side much. My surgeon told me that even though we have 4 parathyroids, we can actually get by with only one of them, or even one half. Most people have no problem at all, but depending on where they’re positioned, it can be hard to avoid them. I’ve heard of them actually being embedded in the thyroid tissue, but again, this is rare. When I had my TT, I had to sign off on a “possible parathyroidectomy” in addition to my TT just in case it was necessary, but it wasn’t.

    You mentioned having an ultrasound. Have you had a FNA (Fine Needle Aspiration, or Biopsy)? I had one and the results were inconclusive, so it really wasn’t all that helpful in my case.

    I had a goiter and a nodule that made me feel like I was choking when I bent my head down – like when I was styling my hair or lying in bed with too many pillows. My nodule was pressing on my trachea, pushing it off center and was also growing down past my collar bone. When the pathologists examined the tumor it measured 7 cm, but it was benign.

    I only had 10 days from my appointment with my surgeon until my surgery, and there was so much to do. It’s good that you have a little more time. Did they order a thyroglobulin test? I wouldn’t put that off in case your lab screws up like mine did. (They did the wrong test – thyroglobulin antibodies, so now I don’t have my pre-TT levels to compare later tests to).

    Good luck with your surgery. I hope everything goes as well as mine did and that the findings are also benign.

    barbra
    Post count: 160

    The only FNA I have had was back in 2013 when it all started. It was negtive at that time.
    No thyroglobulin test so far (that I know of).
    I have a pre-sugery conference scheduled on the 4th, more info then.
    Thanks for the good wishes.

    Hugs.
    Barbra.

    emmtee
    Post count: 148

    Thyroglobulin is a cancer marker, so I think they’d only order that test if they suspected something. If your lab is Quest, you probably won’t have a problem. LabCorp was the one that messed up my test. My doctor’s office is partly to blame because they kept giving me the Sonora Quest form which didn’t have the same codes, but LabCorp always accepted it and said it was fine. Then they just guessed about which test the doctor wanted. After my surgery my endo ordered this test three more times and they did the wrong test every time. After the last time she was able to catch them while they still had my blood sample and got them to run the right one. So a year and a half after my surgery, I finally got the test done. (Even though my tumor was benign, my surgeon still wants me to get this test done annually because my tumor was so very large and there’s a slim chance that the pathologists missed something).

    barbra
    Post count: 160

    Hi,

    Had the pre-op checkup yesterday and everything is still a go for the 16th.
    Won’t have a time until about 48 hours before.
    I did not know that they don’t use steri strips, they use glue, which will peel off after a time. Nothing like having your throat cut and glued back together.
    I’ll be in touch again when this is over.
    You all take good care.

    Hugs.
    Barbra.

    flora
    Post count: 133

    Sending good thoughts and good wishes to you, Barbra – just like you have sent to so many of us here on the forum!

    – flora

    emmtee
    Post count: 148

    I’m glad you were able to meet with your surgeon. It sounds like you’re getting good care.

    My surgeon used surgical glue on the incision, and then the wound was covered with steri-strips (placed horizontally in my case, although I’ve seen photos in which they’re placed vertically). I was told that I could shower with the steri-strips, but to just let the water run over them and not disturb them – that they’d fall off on their own. Mine held so well that they were still in place when I met with my surgeon for my two-weeks post-op appointment, and she had to remove them.

    Best of luck to you next week.

    Marci

    Liz1967
    Post count: 305

    There are internal dissolvable sutures, the glue only holds together the superficial skin. I had glue, no steristrips, after my TT and it healed with barely visible scar.

    swhited
    Post count: 18

    Good luck! I’ll be sending good thoughts your way on the 16th. All of you “old timers” were so supportive when I joined this forum three years ago when I first was diagnosed and I’m thankful for all the support and information this forum provides. Wish you the best and hope you’re feeling more yourself soon.

    barbra
    Post count: 160

    Hi everybody,

    TT is all done and I seem to be back to my old self, well aside from the rough gobs of glue on my neck.
    Everything went as planned on the 16th. The cut across is 3 1/2 inches long and had a drainage tube protruding out of it on one end.
    The doctors said that my thyroid, or what was left of it, was a mass of dead scar tissue due to the radiation 4 years ago. The para thyroid was left intact. Everything else (scar tissue, goiter, nodules) is gone.
    The first day was painful (swallowing, moving my head) and sleeping almost impossible. The main discomfort came from the tube and all the tape that held it in place. Some nausea and dizzyness. But I only needed strong pain meds twice, after that it was Tylenol. They kept me overnight at the hospital. After more bloodwork, mainly to check calcium levels, they let me go at 7 pm that evening.
    I got prescriptions for Percocet, Tylenol, Calcitriol and Tums (yeah, really Tums, 1000 mg) and 100 mcg of Synthroid.
    After another night with hardly any sleep, although feeling better with much less pain overall, I took my Synthroid waited about an hour and had my customary 2 cups of coffee. No breakfast. After a while my hands started shaking, heart racing, blood pressure up. I was dizzy, nauseous and weak. I already had an appointment that morning to have that irritating tube removed. I didn’t trust myself to drive so my son took me. Turns out that the increased dose of Synthroid together with the coffee brought on the reaction I had. As a result they lowered the Synthroid to 75mcg and my coffee to one cup (the second one I can have in the afternoon). Also, I have to eat 3 meals a day because of the Tums. I’ll be looking like a blimp in no time at all.
    Now to the fun part – the tube. After removing all the tape the doctor said to count to 3 and she pulled out the tube. What I had thought to be maybe an inch stuck in my throat turned out to be 6 inches of flat looking tube. Seriously, folks, it looked like a tapeworm! She put a bandaid over the hole and we were done.
    Since then the pain is gone, I am good to go. My neck looks like crap. I asked my son if my neck looked all gnarled up and he said yes and there’s the scar there too. When I came out of recovery he looked all shocked and said: “What did you all do to my mother? You cut her throat? I brought her in for a broken ankle!” He really had them going for a moment. (I can’t take him anywhere)
    So, all in all, I seem to be doing well and am pain free. Also, without that tube I slept all night. We’ll see what the scar is going to look like when all that glue comes off.
    Test results on the goiter, nodules etc. should be in by Tuesday.

    I want to thank you all for your good thoughts and well wishes.
    I’ll keep in touch and hope you all will too.

    Hugs.
    Barbra.

    emmtee
    Post count: 148

    I’m glad you’re doing well after your surgery. I’ve always wondered what happened to the thyroid after RAI. It didn’t seem logical that it would just “disappear.” So it just dies, and scar tissue is left then?

    It sounds like your incision is about the same length as mine. I took a photo of a tape measure taped to my neck, so I’d have a record. :-) Mine’s a little under 3 1/2 inches end to end, but it isn’t straight. It mostly falls within the crease in the skin, but it misses the mark a bit on one end. I think over time, my skin will form a new crease to match my scar.

    I didn’t have a drainage tube for my thyroidectomy, but I had a drain years ago when I developed an abscess following an abdominal surgery. It really is shocking how long the tube is. Mine wasn’t flat, though. I remember it was curled up into a spiral, and that’s what kept it from falling out.

    My neck was a little bruised around my incision for a week or so following my surgery (also covered by steri-strips) so I didn’t take a lot of photos, and now I wish I had. It would have been nice to have more photos to look back on to see how much progress I’ve made in healing.

    barbra
    Post count: 160

    Hi emmtee,

    My doctor said that on one side there was very little of the thyroid left and what was there was scar tissue. On the other side the thyroid was still the original size, just all scar tissue. So, evidently, over the years the tissue does disappear. Don’t know where it goes, though.
    I’m glad it’s all done. I hope the scar will someday only be a thin line, like the doctor said.
    I am signed up with a Patient Health Portal from the hospital and the doctor posted the surgery report. That is truly interesting reading – a blow by blow account of everything done in the operating room and how it was done. Fascinating!

    Hugs.
    Barbra.

    barbra
    Post count: 160

    Hi emmtee,

    I had an appointment this morning with the surgeon so I asked her again about the disappearing thyroid and she said RAI shrivels it up over time and that’s how it gets smaller.
    She peeled off some of the glue and what I can see so far looks good.
    She also had the pathology report of the goiter, nodules and thyroid tissue. They are not sure about their diagnosis and did not commit themselves one way or another. So, they are sending everything on to Hershey Medical Center in Pennsylvania. In another week or so I should know something.
    I feel fine, no pain and no effect from the dosage change of Synthroid.
    I hope it stays that way.

    Hugs.
    Barbra.

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