So much has occurred since my previous post. For context, I had the cyst for 10 years, so this month or so of recovery hasn’t felt as bad as the last 10 years as a whole have been, keep this in mind.
I have an immense respect for the medical field, however, I have since learned that if you do not advocate HARD for yourself, there could be problems receiving the care you need. As soon as I got out of my flap surgery, the first question my mom/caretaker asked was how do we care for this wound. The surgery team handed my mom a couple gauze pads and said “you got this mama!” Spoiler alert: we did not.
Short version, it got infected. I was sent to wound care to be treated and they have been angels and so informative. Their advice on care was sometimes different than my surgeon’s advice, but because they are specialized in wounds, I listened to the wound care people and ignored my surgeon telling me I could get it wet in the shower to clean it off (do not do this if you have any areas of separation from stitches. My surgeon knew I had this and still advised me to get water in there, eek!)
So now we are like one month post op. I am definitely healing a lot better thanks to my boyfriend basically becoming a wound care nurse. I was told a home health nurse was not covered, another area I now know I needed to advocate for myself harder but we’ll come back to this point later. The stitches have been out for awhile now and I’m starting to feel normal again. And then I got MRSA! It flared up so fast in one spot and tunneled down 6cm deep. So drumroll please, I’m on a wound vac! Like as of right now.
It’s annoying, but it’s way better than slowly healing a now 3.5cm deep wound naturally. And with the wound vac came a home health nurse that my insurance covers 100%! Remember earlier when I said I was told they wouldn’t cover? This was false and I should have checked myself. It’s so difficult to think of these things when you are actively healing so I am not too hard on myself, but sharing this here so the next person knows to call your insurance company and pester people!!! Their jobs are supposed to be to care for people, hold them to it.
And that’s basically where I’m at now. The nurse is coming to change the wound vac dressing Tuesdays and Saturdays, I see my wound care people on Thursdays. This is day 3 with the vac on and they have estimated 2 weeks should do the trick. I’ve only had one dressing change and it definitely hurt. I think I understand the pain people were talking about with open wound excision/packing. Thankfully my area is very small where it is being packed, but I feel for you guys.
That is only scratching the surface of the rollercoaster this recovery process has been. Overall I am so happy to not have a cyst anymore, I am looking forward to my body being totally closed up and swimming this summer. Maybe that’s a far off wish but I keep it close to my heart.
If anyone wants to know the supplies needed post flap surgery or could use some tips for wound care, please comment. If you have had a flap procedure, I would also like to connect on how your recovery was. And if you’re a woman reading this with chronic pilonidal disease, it will get better but you have to get professional help first. Here if anyone wants to talk.
Despite it all, I can’t believe I’m 1 month and 10 days cyst free 🥹