From the start I knew that it would be a long journey, but after having a setback after my 4th expanding session, with my skin breaking down, I am faced with an extended journey (longer than I ever anticipated). I saw my specialist yesterday and the spot had still not healed, he used forceps to pull the outer layer of the spot off, he said it was folliculitis, an inflammation/infection of one or more hair follicles. I was unable to have any expanding again yesterday as my specialist would like to wait until the spot is fully healed to prevent further skin breakdown. He has advised that he will not be doing anymore than 20-30ml each session to ensure that it is a gradual stretch and we have no further delays or issues with the skin. This means that I will need to have another 10-12 sessions to get to 400ml.
After hearing this news I was devastated as I have been hoping that it would all go smoothly and we would be on track for my new skull to be inserted by June/July at the latest. We are now looking at expanding weekly until possibly mid to late August if it all goes well weekly with the 20ml expansion sessions. From there I would have the cranioplasty in late Aug/Sept with further monitoring and recovery to mitigate infection or further complications.
To say that 2022 is a write off is an understatement, I am glad that the specialist is being as cautious as possible and know I am in good hands; however, at times I do feel deflated at how long the road ahead is. Each day I just have to remind myself to enjoy the little things and be grateful that I am alive. This treatment process has shown me that I am stronger than I ever thought and I can get through this. No matter how long the road is ahead I know that I will get there eventually and this will all be a distant memory, I just have to take each day and week as it comes.....
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