Well the time has come for me to start a difficult journey undergoing many painful surgeries, hoping the outcome will help my hidradenitis. I have put off major surgery for my HS (hidradenitis suppurativa) for years, for many reasons. 1. I'm afraid of the pain. 2. There is only a 50% chance, the surgeries will work. 3. There is high risk of infection..which could lead to death.
It took me 4 months to finally get into the plastic surgeon, because of my insurance. During this time, I studied the surgeries I could have, and spoke with many people who have had the surgery. I knew what I wanted when I walked in the Dr's. office. I told the surgeon before he even looked at my skin, I knew what I wanted, then he asked to see all of my skin. Without any hesitation he said we will schedule the surgery as soon as possible. He didn't sugar coat anything, he asked me if I knew what I was in for, and I did. He told me it would take a long time to heal from each surgery and it would be extremely painful, and no amount of pain killers would keep me out of pain. I just looked at him and cried and said "I'm dead inside, and I need my life back no matter the cost." He understood from the pain in my eyes. I should know by the end of the week the date of the first surgery. He said probably around a month, I'm hoping for after Thanksgiving, but before Christmas.
I opted to have my axilla and torso area done first. (I will ultimately have my axilla, torso, breast, stomach, groin, legs, bottom, and ears done) The surgeon said depending on how surgery goes he might do my breast during the first surgery as well.
The surgery is called radical excision surgery, they will actually remove all of my skin in those areas. On my arms (the part I call the chicken flap..lol) they will just remove the diseased skin and pull to staple the healthy skin together. On my underarms down the torso they will remove the skin about 6 inches across and 12 inches down (what I'm guessing will be the measurements) This will just be open flesh that will be bandaged, and left to grow new skin. Skin graphs will probably be used after a period of time to help the skin grow. The surgery on my breast will have to be stapled because of fear of infection, which means, my breast will be completely deformed when they are done. This has hit me the hardest as a woman. I'm really emotionally torn up about it. My body is covered in scars which is bad enough, but to have your breast mutilated is on another level. My insurance will not cover surgery to correct them in the future, because it is an "elective" procedure.
In a couple years when I've healed from all the surgeries, I'm going to have a SAVE the BOOBIES fund raiser...lol. On a serious note, if anyone knows a plastic surgeon, that might do probono work, please let me know.
Now for the crazy part, guess how long I will be in the hospital? 1 day. That much skin removed, and only one day in the hospital, that kinda scares me, but at the same time, it will be nice to be home. They are going to set up a home nurse to come do dressing changes, and I will work with a pain management specialist, they said I will probably be on Oxycontin all the time, plus meds that will make me sleep the whole time, but I would get "really good drugs" right before each dressing change. Those will not be fun.
I've known for a while I was going to go ahead and start the surgeries, however, now that the time has come to schedule and get them underway, my mind is going crazy. I'm so scared. The risk of infection is high, the risk of permanent nerve damage is high. I'm so scared of the pain that is to come. However, what bothers me the most...I won't be able to hold my niece or hug my nephews for months and months. It literally is tearing me apart inside.
I plan on taking many photos along my journey from beginning till end. I will post them when I can, but be aware now they will be very very gruesome and not for the squeamish.
I've been going through a battle with my HS over the past month with a "hole" in my leg, and I haven't been able to do anything. Pain or no pain, I've only got a few weeks before I begin my journey and it could be a year or more before I'm able to just get up and go again, so I am going to make the best of these next few weeks, and try to get out some, and I'm going to hold my niece and nephews as much as possible.
When all is said and done, I'm hoping for a positive outcome, and to have my life back or at least some of it. I'm trying to stay positive, but I'm not going to lie, I'm terrified.
(I have been very blessed in meeting and talking with many people on facebook with HS, and a couple people on twitter, who I've become very close with that are currently undergoing these same type surgeries. They keep it real with me, but the keep me thinking positive and telling me to think of the future instead of the now. I really want to thank them for being so great to me, and for their friendship, love, and support.)
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