I went for my second CT scan yesterday to see if there has been any growth since my last CT scan in May 2019. They were 2.8 and 2.9 cm in 2019, when I first started having symptoms. My CT scan showed 3.2 and 3.3 this time.
I feel like crying. I’m relieved to finally have confirmation that I’m not crazy. Im frustrated that this is even happening. I’m scared because I’ve never had surgery before and I’m the queen of catastrophic thinking.
They also showed level 2 adenopathy and said its likely reactive. Does anyone know, is that referring to my lymph nodes?
I’m glad that the CT confirms what you were thinking; hopefully you’ll be listened to now, & can progress with some treatment. I can relate to the being scared of surgery; I was really nervous having never had a general anesthetic before, but it wasn’t as bad as I expected. You can read up on here about people’s post-surgery experiences, so you know what to expect, maybe that’ll help you with some of you anxiety. Most of us get to the point of having our quality of life affected so badly that we’re prepared to take the risks of surgery, & those risks can be lessened by having an experienced surgeon. If you want advice on that we can help, & the doctors list in the doctors info section might help.
About the adenopathy- that’s something you’ll need to discuss with your doctor as they may want to do some other tests, but it would be referring to your lymph nodes I would think- are they enlarged? Quite a few members have had that, it could be that the they’re enlarged because of the irritation from the styloids, but other things need to be ruled out.
I hope this helps, have you a plan now to go forward?
It must be such a relief for you to have distinct evidence for the cause of your symptoms. Work hard to be the queen of positive thinking & put the catastrophic thoughts behind you. There is much to be said for positive thoughts when it comes to surgery & healing. It would be ideal for you to select a surgeon you feel really confident in as that alone can help relieve anxiety. I think I’ve mentioned that there have been a number of people from your state who’ve traveled to see Dr. Samji for surgery in CA. I don’t know if you can travel that far, but if so, it would be worthwhile. He’s a very skilled ES surgeon & has a good bedside manner. I can give you some screen names if you want to PM anyone.
Jules gave you some great information, & I agree w/ the adenopathy - because it says it’s reactive, that means your lymph glands are enlarged as a reaction to something, but you need to confirm w/ your doctor that there isn’t a secondary issue. I had enlarged lymph nodes in my neck from ES. They went away after surgery.
I wish I could travel, but Im a single parent on state insurance. There’s no way I could afford surgery on my own. I have an appointment with my ENT next week, so hopefully we can find a solution. It’s taking such a toll mentally. I can’t do this anymore.
Its important, I think crucial to be seen by a doctor (ENT) who has experience performing ES surgery.
As for reactive adenopathy, in my first es surgery, they took out a lymph node (not uncommon) that was in the way to get to my styloid. Pathology showed is was highly reactive…it was benign but I think so much inflammation in the neck makes those nodes reactive.
I do hope so, sending you a gentle hug & thinking of you
Since you need to stay w/in your state, try to find a skull-based ENT surgeon, maxillofacial surgeon, or neurologist. These doctors operate in the area where the styloids are & will at least know the “territory” even if they haven’t done any ES surgeries specifically.
I will be praying that you’ll be able to find someone you feel confident in to help you.