Today, as I was taking photos for this blog, I noticed a hole in my arm and possible new flares around my surgery. I know this type of surgery will look gross while it’s healing, but I’m so scared of new boils forming or infection. I’m new to this so, I talked to a friend who said she didn’t think the surgeon went deep or wide enough to get everything. I sent the pictures to my dermatologist and begged him to help me get this fixed. He’s trying to get me into my new dermatologist taking over for him sooner than Sept 25th . He’s also going to see if he can send me 2 hours away to St. Louis to have proper Hidradenitis Surgery. He said he would do some searching and find an HS surgeon for me. I told him I would go wherever he wanted and do whatever he wanted to get this done right. I won’t lie, I am in tears now. I had so much hope this would be a good surgery. The surgeon left too many areas open for new flares. He should have just cut the whole areas out and not just outlined each lesion! I am sorry, but I am mad and been crying most of the afternoon.
At least my dermatologist was caring, offered further options, and was very helpful. My Surgeon was less caring and just said, “These type of wounds tend to be ugly until they heal.” He’s not a hidradenitis surgeon, his specialty is colon and digestive surgery. I should have just let my dermatologist pick a surgeon for me! He does not treat HS and doesn’t even understand what a flare is! Yes, I am mad as hell right now. I went under the knife with the understanding he was doing wide area excition and deroofing. That’s what he wrote he did and what he told me he would be doing. I told him I didn’t care how deep or wide he cut, just remove it all. I tried to stay positive after sugary hoping he did it right. It was my first surgery and I trusted everything would be ok until a friend, who’s had 10 HS surgeries, said it wasn’t the right type done. Even my dermatologist agreed it wasn’t wide area today once he saw the photos I sent.
I do have some good news. I cleaned my kitchen and bathroom today with little pain. That’s right! No pain pills needed until after I was done of course. Also, BIGGER news! I got Missouri Spend Down Medicaid for the Disabled today. I have to meet a deductible of $983 each month, but my hospital and specialty physician bills for ER, dermatology, digestive health, and surgery clinic are usually over that. My out of pocket medication bills and my regular primary care bills count too. Lucky for me, my primary care doctor’s clinic has me on a low income plan and I just pay $25 a visit which includes all labs, the Dr, and free mental health care (should I opt for that).
I was going to post an update yesterday, but we got a second Kitty we named Sox . He’s a black and white cutie for sure. Toby is happy to have a playmate. They are both about 9 weeks old. I have pictures on my other blog here: New Additions and More
If anyone has had HS surgery, please let me know your thoughts on how I am healing. This is my first time having surgery. Maybe I am wrong about everything. I don’t know.