Hidradenitis Suppurativa Support Group

yep thats what it looks like, ive been able to watch both of hubbys procedures only his took longer the next one is scheduled for july 11 and is suppose to be 3 hours long.

ok I have lots of Questions about the HS Institute 1) How does it work do you go for a office vist first to see what stage you are in. I guess what I am asking is I live 13 hours away if I go there I will need to get the most bang for the buck I guess you could say.

srg its well worth the visit dr hazen will sit down with you and talk over all your options and answer any questions you may have. It could take 1/2 hour or it could take 2 hours. but our first visit they went over medical history with my spouse of everything that has been tried and all the medications that have been tried. the nurse has you put a gown on if the hs is not visible which in my spouses case is on his butt and groin area. He diagonoses which stage you are which there are hurley stage 1 , 2 and 3 clarence is a way out 3 if there was a 4 hes close to it. Dr. Hazen goes over what HS is and debunks all the myths you have heard. He will then decide what course of treatment he would like to try on you and if your a candidate for surgery it takes a very long time to schedule it. it took from May 2011 to Oct 2011 to get a appt with him. and when we decided to proceed with the c02 surgery the first available date was feb 1, his second surgery was scheduled for march 28 since we didnt book for the 3rd surgery for may the soonest he could get in was july 11th. He put Clarence on Bactrim before the surgery in oct just in case there was a secondary infection before he started the procedure that we would have it pretty well gone by time surgery got here. But has kept him on it because he will have open wounds for almost 2 years. It will take about 12-14 procedures to cover all of his areas of HS. Check with your insurance as to whether the CO2 laser procedure is covered cause most of them you will need prior approval. You also need to consider the cost of supplies the vigilon wound cover which is very expensive its over a 100.00 for a box of 10. Since we are using the VA they substituted it with something called Restore which is about 25.00 a box for 3 sheets this is used for the first 3 weeks. The restore depending on your wound size we can cut each sheet into 4 for four days. we put 2 telfa pads , then a abd pad , and tape for the first 3 weeks he likes antibodioc ointment used then you use vaseline. He will give you about 3 days worth to take home. So before you have the surgery i would find a place close to you that you can get a fax number, so when they write the script for supplies you can provide a fax number so they can send the supplies to you. I wont lie to you, this is a very painful procdure but like clarence says if it will get rid of the HS and end the pain eventually and give him a better quality of life it will be worth the pain cause he lives in unbearable pain every day, plus the embarassment of having to wear depends for all the drainage from the aliens. I hope I answered some of your questions and if you have any more questions I would be glad to answer them.

I take it that he supplied you spouse with plenty of pain meds. I posted some pics on my profile last night of my under arms they are in bad shape.

no actually he didnt he prefers your family doctor does that but he was already on vicodin for the pain, because your primary knows your health history better. Have you seen the pics ive posted of Clarence from before and during these surgerys.

the edit: i just saw your pics. next time i take pics of clarences butt ill take pics of his armpits he had this hs as a teen but never knew what it was its mostly scar tissue now but in the summers now and then it will get sore and tender. so far in the 28 years weve been together it never broke the skin. He had a bad case just above the groin but below the belly button in 2000. The surgeon who cut it all out said it was just a infected hair that went wild. Then it came back on his left butt cheek in 2003 it wasnt till 2006 that we actually knew what we were dealing with. It was me that actually diagnosed then went to cleveland clinic to get it confirmed. By then my knees finally gave out and i was in wheelchair and homebound so i had plenty of internet time, still do but hoping that will be changing soon. I want to enjoy this summer at the pool and do some much needed gardening that ive not enjoyed not being able to do the past 6 years.

Post edited by: doves1959, at: 05/09/2012 10:34 AM

Yes I have seen you pictures post and you poor husband has to be in so bad pain my heart goes out to him

Srg43, I'm about 3 1/2 hours away from the Institute and I was told on the phone when I first called to schedule my appointment you can go in for a consult on Tuesday afternoon and then have your surgery on the next Wednesday morning. I was too much of a chicken to do that so I went last month for my consult and will be getting my surgery next week. I just needed a bit of time to absorb what I was told before going into surgery, but you can get it all done in one shot if you are confident you want the surgery and save a trip. Also, you can get a discount from the hs institute for the Holiday Inn in Westlake...it's $89 a night with their discount.

Thanks for the info I also will be to chicken to jump right in I think what my wife talked about is maybe going up sometime this year if we can get an appointment and then see what he has to say and go from there if it is surgery that I need then we will have save up the money for all that in tells because if I get the surgery I sure I will need to fly out and back home don't think I could handle a 13 hour car ride after that LOL

Indianamom right now its taking about 4 months to schedule ahead. when he had the march 28 they wanted to schedule him for end of may and hes so booked up on wednesday we didnt get a spot til july 11 so we booked the sept surgery already so he wont have to wait 4 months again. in july we will book the nov surgery so we can stay on track for every 2 months.

As the word spreads about this procedure more people are going to him so it will be taking longer to get the surgery...