Hidradenitis Suppurativa Support Group
Hidradenitis suppurativa (hi-drad-uh-NIE-tis sup-yoo-ruh-TIE-vuh) is rare, long-term skin condition that features small, painful lumps under the skin. The disease manifests as clusters of chronic abscesses or boils, sometimes as large as baseballs, that are extremely painful to the touch and may persist for years with occasional to frequent periods of inflammation,...
So tomorrow at 9am is my big visit to the Plastic Surgeon at UNC. I am more nervous than a long tailed tom cat in a room full of rocking chairs!
I was originally going to see Dr. Erfanian, but will be seeing his partner Dr. Halvorson instead. I am hoping since they have some experience with HS (an even have a nurse on staff who has HS from what I hear!) that they can help me in the surgery area.
My left armpit has decided to give them a good idea of what I am dealing with on the HS front.
I have two major league spots in my left armpit. One I call The Black Hole. The Black Hole is a spot that scarred funny after having been lanced a couple of times way back, and has always been a small pinhole kinda spot. Now the area around it has swelled up and stretched the small pin hole into a monstrous size black hole that I can put a whole sewing needle into. It has already ruptured a couple of times this weekend, which for awhile gave some relief, until it started swelling with junk again.
My second spot in my left armpit is the Ballistic Missile Silo. About 4 years ago I had a spot come up in between my left armpit and left breast that swelled to the size of half a softball. It eventually ruptured on its own and (so I thought) went away. Now, for about the past 4-6 months, it came back and has been just sitting there, constantly swelling up, rupturing and then going down only to start refilling with junk. Sometimes it ruptures a little on its own, most times I will be trying to look at it in a hand mirror and it will explode with such force that when it hits the mirror it makes a dull thunk sound.
So now when my husband asks me what is wrong I tell him either The Black Hole is acting up...or my BMS is gearing up for launch..lol..This is kinda my way of sorta minimizing my HS.
All I am asking is that you all keep me in your prayers, thoughts, send warm fuzzies my way for tomorrow, as I am hoping that this plastic surgeon I see tomorrow can offer me some sort of help. I am hoping that he will be willing to work with me (IF I feel comfortable with him doing surgery on me that is) and do one area at a time so I can stay as functional as possible. I have two special needs kids that I still want to be able to help take care of (as my husband had neck surgery two years ago that left him unfortunately in severe chronic pain since then, and a mother in law who has two frozen shoulders and just had 6 mini strokes this last November that she has not completely recovered from yet) and I have been working a desk job answering phones and pushing paperwork and I don't want to be out of work longer than I absolutely have to due to our financial situation.
Also I would like to ask from those of us who have already had surgery, what kind of procedure did you have and how long was your recovery time? What I have to do at work is not hard nor does it require heavy lifting of any kind. Answering phones, typing on a computer, filling out forms...stuff like that...I would like to know how long it might be before I can go back to doing stuff like that.
Much love to any and all who read or reply! ^._^
I was originally going to see Dr. Erfanian, but will be seeing his partner Dr. Halvorson instead. I am hoping since they have some experience with HS (an even have a nurse on staff who has HS from what I hear!) that they can help me in the surgery area.
My left armpit has decided to give them a good idea of what I am dealing with on the HS front.
I have two major league spots in my left armpit. One I call The Black Hole. The Black Hole is a spot that scarred funny after having been lanced a couple of times way back, and has always been a small pinhole kinda spot. Now the area around it has swelled up and stretched the small pin hole into a monstrous size black hole that I can put a whole sewing needle into. It has already ruptured a couple of times this weekend, which for awhile gave some relief, until it started swelling with junk again.
My second spot in my left armpit is the Ballistic Missile Silo. About 4 years ago I had a spot come up in between my left armpit and left breast that swelled to the size of half a softball. It eventually ruptured on its own and (so I thought) went away. Now, for about the past 4-6 months, it came back and has been just sitting there, constantly swelling up, rupturing and then going down only to start refilling with junk. Sometimes it ruptures a little on its own, most times I will be trying to look at it in a hand mirror and it will explode with such force that when it hits the mirror it makes a dull thunk sound.
So now when my husband asks me what is wrong I tell him either The Black Hole is acting up...or my BMS is gearing up for launch..lol..This is kinda my way of sorta minimizing my HS.
All I am asking is that you all keep me in your prayers, thoughts, send warm fuzzies my way for tomorrow, as I am hoping that this plastic surgeon I see tomorrow can offer me some sort of help. I am hoping that he will be willing to work with me (IF I feel comfortable with him doing surgery on me that is) and do one area at a time so I can stay as functional as possible. I have two special needs kids that I still want to be able to help take care of (as my husband had neck surgery two years ago that left him unfortunately in severe chronic pain since then, and a mother in law who has two frozen shoulders and just had 6 mini strokes this last November that she has not completely recovered from yet) and I have been working a desk job answering phones and pushing paperwork and I don't want to be out of work longer than I absolutely have to due to our financial situation.
Also I would like to ask from those of us who have already had surgery, what kind of procedure did you have and how long was your recovery time? What I have to do at work is not hard nor does it require heavy lifting of any kind. Answering phones, typing on a computer, filling out forms...stuff like that...I would like to know how long it might be before I can go back to doing stuff like that.
Much love to any and all who read or reply! ^._^
Anyway, from what I understand this can be done several ways. The way mine was done is that i had surgery on Monday and I was kept in the hospital with a vacuum pump and on IV abx. I was in the hospital for about 6 days. I was put out of work for 4 weeks including the week I was in the hospital (my company paid me 100% for this disability and will do so again in 6 weeks when I have the other side done so financially this isn't an issue for us, also my surgery is covered by insurance). I had two follow-up visits with my surgeon since the surgery and I am starting PT this week to be sure I have full and complete movement of my shoulders. This is something you should ask about!
The other way they can do the graft is by sending you home with oral abx and the vacuum pump (in other words you'd have to have the pump with you at all times, any issues with the pump you'd likely have to go to the hospital to correct) but it would allow you to be at home.
I was not allowed to lift anything over 10lbs after the vacuum pump was off, for about two weeks. Also I needed help with dressing changes. We have two young (neurotypical) children, one of whom is not a great sleeper, the other is only 6 months old.
My recovery was fantastic. I had no pain in the hospital (and I don't take pain meds at all really), I had little to no pain once the pump was off, I am in almost no pain now aside from a little stiffness in my muscle in my tricep which is why I am starting PT. Overall this surgery has really helped me. The pain from this side was not awful but it was bad at times.
I also have this on my left side, because of the way I heal I have what is known as hypergranuloma tissue (you can look that up if you want) but it makes this condition 500 times more painful than just lumps and draining because my stuff doesn't heal after they drain they stay open and pussy and gross for the most part. The hypergranuloma tissue was one of my big reasons for having the surgery.
I would say the surgery was worth it to me because of my children. 8 weeks of being out of work I could do, also the med bills we planned for (but our insurance is good so I am not super concerned there)- I was really only unable to do anything with my arm for about 3 of the 4 weeks that I was out of work, now I have been cleared to use it "as normal" and I could shower two days after I got home from the hospital.
Anyway, sending you positive thoughts and I hope you get a surgeon familiar enough with this disease that he can help you. I am sure whatever your decision is regarding the surgery it will improve your life.
I am counting my blessings (and all the prayers and well wishes that helped it along!
Here's a PubMedCentral article about some armpit surgeries and their results:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3407534/?tool=pmcentrez
You know your Monsters better than anyone, but am wondering if it might be better to get them both in one surgery. Too far apart? I worry that previously-tunneled skin will re-erupt between the two areas.
I'll be sending you "warm fuzzies" as you prepare for your procedures, and will keep doing so until you are completely healed from both!
(gentle hugs!)
Rebecca