Hi everyone,
For those of you interested in this procedure as an alternative to surgery I thought I should share my experience.
Before that however please take all the info that I provide with a touch of salt. Each case might be different and my facts may be wrong or they could change as more evidence is corroborated.
I had my nodule for many years and despite it being benign (and cystic) it kept on getting larger to the point where my ENT recommended surgery. I agreed that something needed to be done because each time they were aspirating it I could notice being able to swallow easier but was reluctant on surgery.
My ENT is considered to be an excellent surgeon and I would have trusted him to be my surgeon, yet I was a bit disappointed with him as he didn’t know enough about RFA and I had to do my own research and to advocate for this. Very few ENTs know about the procedure at the moment plus I doubt that there would be capacity for all the potential patients.
I was told that at this point only 3 centres in the UK are performing the procedure and at UCLH they treated 44 patients so far. They also think that it could become standard treatment for benign nodules instead of surgery especially given that on the long run this could be a cheaper option for the NHS compared to surgery.
Yesterday I had the RFA procedure done at UCLH and so far I am thrilled with my decision.
There are possible side effects, of course, some more common others just theoretical so far but overall from what I gathered it fares better than surgery. The most appealing thing for me was the fact that with this procedure, it is much more likely that the thyroid’s functions are not affected therefore there’s no need for thyroxin for the rest of the life.
The team there was fantastic, and the procedure was not the terrifying experience I was expecting. I was scared up to the point where the first ablation happened and then I instantly relaxed because it wasn’t painful. There was very little pain in my case. I think they inject the minimum necessary amount of local aesthetic because at some point it became painful so I told them and they immediately injected more so the pain went away. I could feel at times the probe moving in my nodule, some jaw pressure and the popping of the tissue under the probe’s heat I suppose, but even if it sounds weird I actually liked that sensation (like bubble wrap being popped next to your skin).
After 30 minutes in recovery I was able to go home and I could eat normally. For the next 5-6 hours I noticed that the area was slightly puffy and I did experienced some pain and although I have no idea how it compares with that of other people that had the procedure I didn’t need pain killers, just an ice pack. I talked a lot after the procedure, which probably wasn’t the best idea because at times my voice was getting slightly hoarse. I woke up today however with zero pain (unless I poke it of course) and less puffiness so I hope things will stay like this. The worst risk that I have at the moment is that of an infection but all seems good now.
The nodule should shrink. In some cases a second procedure is needed to bring it to the desired size. They told me that in my case they hope it will shrink by up to 60% in a month but we’ll see. As this progresses, I will update this thread.
Hope someone finds this useful.
UPDATE (1 month)
Hi, I had my 1 month appointment this week. The nodule has already had a 86% volume reduction. Initially it was 2 x 3.6 x 4 cm and now is 1 x 1.7 x 2.4 cm.
Apparently, in my case, the procedure was particularly successful because the nodule was mostly cystic so the ablation prevented it from reaccumulating liquid. But not to raise anyone’s expectations too high, I think I should mention that they told me that, of all the patients that they treated so far, I had the most significant reduction and that most of the other patients achieved only an up to 50% reduction by their 1 month assessment.
I will have another follow up appointment at some point in the future. Don’t know exactly when, haha! I was so chuffed to hear the great news, I didn’t pay attention when the consultant told me in how many months they will want to see me again. I think he said 6 months but I’ll know for sure when I receive my appointment letter by post.
In terms of how my neck feels now, I can really say I am thrilled! I can hardly see the nodule anymore, only a bit when I swallow. So from an aesthetic point of view I am very happy, even if it doesn’t get any smaller, although I really hope it will get even smaller. Another major thing is that I don’t feel my skin being pulled by the nodule each time I swallow and when I’m resting my chin against my chest I don’t feel the nodule being squished anymore.
When I touch the spot where the nodule was/is, the tissue under the skin feels hard, much harder than my initial nodule, and less elastic – basically if I try and press on it, it does not squish at all whereas before it did a bit. The thing is however, that I can feel this difference only when I prod the nodule and I am not aware of it otherwise plus the consultant assured me it will gradually feel like normal tissue again. Even if it won’t, I don’t really care because either living with a large nodule or a surgery scar on the skin would have been a lot worse.
This is it so far. I'll do my best and try and remember to update this again after my next appointment although not sure if there is much point to it, given my current happy-ending status. All the best!
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