Some CMN’s have what are called ‘nodules’ on them. Another development that was announced at the conference was that in most cases, these nodules were just lumps of excess fat and could easily be removed. My CMN is covered in these nodules, and they were the main cause of the itchiness. The possibility of having them removed was really exciting for me, because I was willing to give anything a go that gave me some relief from the constant itching.
Because I was over 18, I could no longer be treated by Dr Kinsler at Great Ormond Street. I found a dermatologist in London that knew what CMN was and was happy to see me. At the initial consultation appointment, he went straight in and cut off two nodules that were at the edge of my CMN, on their own. This was a trial, to see how my CMN healed from the surgery.
It seemed to go well – when the anaesthetic wore off it was quite painful, but the skin itself healed okay. I therefore decided to have the nodules removed on a larger section of my CMN. The surgery itself was absolutely fine, it only took about 45 minutes in total, under local anaesthetic. I hobbled onto the train home (with help, I couldn’t feel my leg!) and settled myself on the sofa. As soon as the anaesthetic wore off, I have honestly never been in more pain. I didn’t sleep properly for two nights, and I only made it from the bed to the sofa each day and back again!
After those first couple of days, the healing seemed to happen quite quickly. I had the operation on 24th September, and my CMN was healed enough for me to walk around Disneyland Paris for five days on 12th October! In the short term, the surgery appeared to have done exactly what I wanted it to. The itchiness on that section of my CMN wasn’t as bad and the nodules were gone.
Now, 3 years and a pandemic later, I don’t think that having the nodules removed has made any difference at all to how my CMN affects me or my life. Sure, there’s a section of my CMN that doesn’t have small lumps on it, but the rest of it still does. The area of my CMN that was operated on is still fatty – it’s just all in one big lump underneath the skin rather than individual lumps. That section is slightly lighter than the rest of my CMN now, but I have no way of knowing if that’s because of the operation or because it has just lightened naturally. I have decided that I’m not going to have any more surgery to remove any of the other nodules on my CMN.
In some ways, I’m glad that that first laser surgery didn’t remove my CMN completely. There are so many things that I’ve done because of having a CMN and being a part of Caring Matters Now which I would never have had the opportunity to do. I’ve done a skydive, trekked along Hadrian’s Wall and cycled 70km through London at night (I was only supposed to do 60km, but I got lost), all to raise money for Caring Matters Now. I’ve been to two of the fanciest dinner-dances ever and danced with Brendan Cole at one of them – a real highlight for someone who grew up dancing as much as I did! I took the Caring Matters Now mascot, Ronnie the Bear, on a round-the-world trip, raising awareness of Caring Matters Now and CMN. I’m now the Young Adult Support Contact, and I get to work with some of the most inspiring teenagers and young adults, supporting them in their transition to adulthood.
Regardless of whether or not you have surgery to remove your CMN, you still genetically have CMN and are a valuable member of our community, and Caring Matters Now will be there to support you in whatever way you need. There are so many things to consider when deciding if surgery is the right thing for you or your child, so I hope that this has helped in some way. If you’ve got any questions or just want to have a chat, I’m happy to help! My email address is katy@caringmattersnow.co.uk
You can read more Personal Stories here.