Sorry It's taken me so long to update but I thought It best for me to understand my results first before trying to explain them to you, then I had more hospital appointments for other bits and news on them so It's been a little hectic.
Okay so my results are either one of two things, 1: My Desmoids are to small to show up on a CT (which would be great news) OR 2: They don't show up on scans (not so fun news). So they next step for them is I now have to return to the surgeon who found them when opening me up as he is the only person who can answer this. So the next step is booking in to see him and then returning back to the specialist in a couple of months to tell them what he said. I know what your thinking "Why don't they ask him?" Yeah they did with no response, So it is now down to me to personally find out and get my CT's from him as well.
What did highlight on the CT though was my closed Fallopian Tube is now full of fluid along with the Ovary (Fun Times!) So now have to go get that scanned separately and then see a DR for that, So excited..another Dr, YAY!
I Just met with another Dr (Yes I am collecting them now lol) last week about the lump in my jaw and they want to biopsy it, they have also asked for a CT and Xray to, no Ultrasound as I already had that done. After all that I will see them next month to discuss surgery! Gosh the fun keeps on coming!
And thennnn lol Just one more! I am off to a plastic Surgeon who will fix my scar from when they found my Desmoids nearly 4 years ago as the top won't heal properly. By this I mean my body keeps telling it it hasn't healed yet so keeps healing so it is growing outwards which gets in the way sometimes and really itches to. It use to weep as well but last year that finally stopped :)
So yeah it's been kind of busy at the moment, and how I feel about it all changes daily but I keep on smiling as it's one of the things in life we have control of, being happy :)
I hope you are all well and pain free <3
Hello! I also have Desmoid Tumors--I found your blog on the desmoid tumor facebook page. I get MRI's with contrast and was told by my doctor, who is a specialist with these tumors was the only way these things show up on scans...you might ask your doctor about doing this instead of CTs.
ReplyDeleteI'm so sorry the blog didn't tell me I got a reply. I am going to ask for a full body MRI when I see them in August. I am seeing the Dr who actually saw and touched my Desmoids this Wednesday so 17th June and I am going to ask him for everything and take the information back myself. From the CT scan it's they wrote to my general GP saying there is no sign or Desmoids which has made me so mad. I had a CT before the surgery and there was none on there but when they opened me up my organs was... his words "It was like a rug of Desmoids" so why would think a second CT would show them :/
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