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,...

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HSchich 04/09/2013

I saw a dr today about my HS. He was actually referred by a member on this site (saw an old post) last year. He asked me how did I hear of him, I told him online and he sighed. He said ever since his one patient posted that blog, so many HS people have been calling him and it's not his specification--surgeon wise. So yeah, I saw him and he said he rarely does this surgery; his main focus is colonoscopy but he removed the referral's HS in their groin area since he was doing other work there as well, unrelated to HS. Anyway, he told me he'd be able to do it for me on my left armpit which isn't "too scarred" like my right armpit which would require skin grafting bc it's too scarred. I asked him if he can laser it from the inside but he said laser is something he doesn't do much or at all on patients. He said I should keep looking around for better surgeons who are well trained in HS unlike himself. I was so looking forward to this appointment only to start back at square one. It's so hard to find a drs who has done surgeries on HS and even know what it is...so this is very upsetting to me. I just want a surgeon who is experienced in HS to remove my armpits already. It huts like hell and it doesn't serve a purpose--it's a leaking garbage!!! Does anyone know of an HS dr in CT? I'd go anywhere in CT. I have another appointment on the 18th with another dr but I don't want to raise my hopes like I did with this one. :(

HSchich 04/09/2013

Also, when you are searching for the right dr, how do you ask the receptionist what you want? Like, would you say you're looking for a surgeon that focuses on HS? Please advise.

deleted_user 04/09/2013

Do you have friends or family who work in the med field? A nurse or someone who works in a hospital or for any kind of dr? I got my dr from a dr I worked for who had seen him work on an hs patient in the hospital! So he thought it would be a good starting point for me. I had told him about the first derm I saw who told me not to sweat and to loose weight because its a "fat people" issue.... wish I was kidding! I was 140 at the time too, in the range of ideal for my height WTH!!!!Btw thank you for all of your kind words I'm about to post photos of my progress it will blow your mind. I'm going to go ahead and do all of my other areas in hopes this keeps it calm for awhile!

HSchich 04/09/2013

Hi. No, not really. My sister is a nurse but she's located in Florida. I will keep looking around and making calls until I get a dr that will do the co2 laser. Many drs blame weight whenever they can't find an answer...I hate that...and you are totally weight appropriate.
You're welcomed, I'm glad your surgery is showing good results! That's wonderful. Can't wait to see the pictures. =)

SRG43 04/10/2013

I wish I could tell you how to find a doctor that could help you. I am looking for one that can do the CO2 laser surgery also. I can not afford to go to the HS institute. The money that they ask for up front is to much, aslo I would have to fly out there and all the other thing I would have to pay for while in OH. It would cost around ten grand up front. So with that said I am looking for someone that is close to me and will take my insuarnce. I have a appointment with my derm. on Friday. I am hoping that he will be able to help me find someone.

deleted_user 04/10/2013

Well, I worked in cosmetic surgery and did o2 laser on patients. Every cosmetic surgeon I worked for had one in office ( it is a very expensive piece of equipment) I only worked for 3 different drs before I took maternity leave last year. My dr did not work on hs but he did have the equipment. Try calling cosmetic surgeons or even " luminous light corp" see if you can find a local rep who would have some inside info on who does what with their equipment. Just an idea. Btw the front desk at any cosmetic office deals with reps first hand so maybe you can get info on a rep from the front office staff. Sorry I'm just trying to toss out ideas to help you. If you want I can call my old employer and maybe get some rep or dr info... Anything I can do lets know ;)
Keeping you in my thoughts!
Chuck

HSchich 04/10/2013

Chuck,

thanks a bunch. I never thought about calling cosmetic surgeons. I kept search dermatologist. I made an appointment with a cosmetic surgeon only 15min away from me who does not take insurance, but he uses CO2 laser. His consultation is free so I won't be losing anything. I want to know what his price is and if he can remove it for me, etc. Thanks for the ideas and I hope you're doing well.

deleted_user 04/10/2013

Be sure to ask your derm for a letter of medical necessity for surgery. If the cosmetic surgeon does something considered a medical necessity your insurance will most likely reimburse you. We wrote them all the time for Botox for hyperhydrosis ;) hey every little bit helps right!

HSchich 04/10/2013

Thanks for the tip...will do. :)

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