Steatocystoma Multiplex - Cause, Treatment and Diet for Prevention

There are different techniques in removing the cysts.

Emedicine states that there are a few surgical options.

There's cryosurgery, aspiration, surgical excision, surgical incision and carbon dioxide laser. I, for one, think that aspiration is the best option if you want to minimize scarring. There is a chance of hyperpigmentation problems but that can be easily countered using Hydroquinone cream.

However, certain people have more cysts than others and it just may not be possible to perform aspiration on all of them. In that case, I think laser is the next best option. I've seen many articles on internet that say carbon dioxide laser is typically the choice of treatment for SM. However, Dr. Rox Anderson (derm who works at Harvard) thinks that smoothbeam/fractional resurfacing lasers are also effective. Smoothbeam is nonablative laser so I think there is less chance of scarring compared to the traditional carbon dioxide laser.

In addition, many medical journals say that SM may be due to gene mutations. Specifically, many connect SM to Pachyonychia Congenita. I did some research and there seems to be some progress in treating this genetic disorder (Pachyonychia Congentia Project website has lots of info). So far, there have been some clinical trials that are trying to utilize gene therapy to treat this skin disorder (not specific to SM, but PC in general). These are very early stage clinical trials but encouraging signs nonetheless.

Personally, since SM is caused by some sort of malfunction in sebaceous glands, it would be a good idea to go through at least one course of treatment with Accutane. I would also use topical retinoids in affected areas since it accelerates the skin cell turnover. Moreover, you could go through some surgeries to get rid of all the existing ones and treat hyperpigmentation problems using Hydroquinone cream or some sort of cosmetic peel.

And hopefully for us who are suffering from this condition, we'll see tons of developments/innovations in skin laser and gene therapy in the next decade or so to the point of being able to treat this problem without the scarring issues...

I have my general surgeon remove each one of mine one at a time. No anesthetic, just a scalpel, t-man scissors and forceps. It really isnt that bad. She does about 15-20 at each sitting and sure after awhile its pretty bad but usually bearable otherwise. And it keeps me from hurting myself. No scars so far either! She also gave me a syringe of my own to use when I wanted to do it and it has helped a lot as well. I love my Surgeon! She diagnosed me and she has actually had another patient with them too! She has been my hope thus far!

Guys, how are you????
I have sm since i have memory....I´m 25, and my mom says that even as a baby i had a few bumps on my body...But it got worst and worst over the years. I tried EVERYTHING....You name it, i´ve tryed it....Nothing worked...So far.
Unlike most of you, i´ve so many that i could build an army...Really....I can´t even count them...On my arms, chest, back, and so on....
After a lot of research, i decided to TELL my doctor what i wanted to do, not ask him what he tought. And we started taking them out with a needle (a big, badass needle). In the carton it says 8*4...i guess that´s the measure...Guys, you won´t believe the results.... You don´t need anestesy (sorry for my poooor english, it´s not my language at all) and they go out almost without pain.....The first time we tryed it, in about 30 mins, we took 30 out!!!!!!! Insane number, if we consider that my doctor (a ver young guy, from 28years) has never done that before. And that´s not all of it....He gave me a needle, in order to "help" him a little from home...My neck was a disaster, i had over 30 bumps, and i was ready to go with a surgeon to have them removed, but i didn´t have to...In just 20 minutes, i took them ALL out. No marks, no nothing.
Please, really take this advice, it´s changing my life in a mather of days!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Now, i can plan my trip to a beach, take out mi shirt anytime i want....wow guys....We may not have the cure, but with this, i´m sure we can get by more than fine.....
Any questions, don´t hesitate to ask, i´d love to help you out.

Hi Perroloco,

I am very ecstatic at hearing the positive results you are achieving with this...i have just as many cysts as you do, trust me, they are pervasive throughout my entire body...

it is causing an extreme amount of psychological stress to the point where I can no longer sleep and my health is deteriorating.

I don't know if there is any direct way to contact you to learn more, but I am in the process of making an appointment with a dermatologist for consultation with CO2 lasers, and I would love to bring this solution up to him if it is a plausible solution.

Let me know if there is any information you can provide! i know the forum blocks emails and different modes of communication, but please any help would be very much appreciated.

Best wish for continued success in the future!

MedSeeker

Sorry for the continued message from above, but I forgot to ask...

Perroloco, if you could ask your doctor to perhaps explain the procedure or methodology or tools used so that we could speak to our doctors about this, instead of trying to convince the doctor that "I can use a needle somehow", it would really be great help.

Thanks so much

MedSeeker, I'm sorry if I'm posting on a forumw here I don't have much experience but it sounds to me like you are in a great deal of pain and that it is taking its toll on your mentally as well. I have to wonder if you are seeing a therapist or something along those lines? I think it might help you with your situation. I am just curious to know if that's been offered to you by your doctor. Let me know. And please hold out, I know that it's difficult but treatment with CO2 lasers does sound promising.

Hey Healthnfitnessguy,

Thank you for the support. It is a very trying period, especially when no end is in sight, and I am sure others on this forum are suffering as well.

In terms of therapy, it is not something that I have considered, because I think in my own way, I know the only way to feel better is to find a solution to this condition. I understand a therapist has the understand and skills to potentially alleviate some of the mental anguish, but in the end, it is still that "cure" that will set things right, and I just pray that one of us finds that soon.

Thank you again for the support.

medseeker

Hi MedSeeker, I think that you're right, although I decided to enter therapy with the same attitude as you, and I found that sometimes it was good to just talk to someone without having to feel like i was burdening my friends. Ultimately it's a personal decision so I hope you don't feel like I'm pressuring you. Thanks for keeping us posted on your condition and please let us know any updates!

HI everyone. I've not posted for quite some time now but keep up to date with the forum. I've posted in the past about treatment with the CO2 laser but as some of you are still only just looking into this thought I would update again. I am 38 years old and live in the North of England and first noticed SM about age 15. I am being treated by a fantastic derm at the leading Dermatology department in this area with CO2 laser. I have been having this treatment for the last 8 years or so. My old derm treated me once or twice a year and after the first few years started saying he was not sure he could do much more for me as they were coming quicker than he could get rid of them. He retired and a new younger derm took over 18 months ago and he has been great. He is very sympathetic and is happy to treat me every 3 months. Even tiny little ones that no-one can see but me that my previous derm would have refused to do he is happy to have a go on any I want removing. I have to have a local anaesthetic injection for each one which is hard going then he burns a hole (tiny) with the laser and removes the cyst with volkmans spoon. No stitches required. Sometimes I'm amazed at the size of wound compared to the size of cyst removed. If you leave the dressings on for a couple of weeks and try not to let the scab be too deep then it heals without a scar. The most it would be is a smooth white spot on the skin and that's only if I've taken the dressings off too soon and it scabs more deeply. Sometimes I do this as I'm allergic to sticking plaster and it drives me mad! I also take 20mg Roaccutane long term. Been on it for about 3 years. It drys my eyes out and makes them burn so I only take about 3 a week. It's enough to keep my skin dry enough to slow down the progression. At about the same time I started on Metformin to treat polycystic ovaries and my hormonal inbalance. In fact I thought for years these cysts were due to the hormonal inbalance. Very shocked when it was diagnosed as something completely different although I am still not convinced after much research the hormones are not connected to this. The combination of the drugs or maybe just one of the drugs has definitely had an effect and the cysts have definitely slowed down. Together with a good derm I don't feel as bad as I used to. At one point I even thought about how could I carry on if they spread to my face. My biggest worry now is passing it on to my daughters. My eldest is 10 and has just hit puberty so I'm in a constant panic about that. I went for genetic counselling and was told it cannot be sporadic and it's definitely inherited autosomal dominant but none of my family have it; not my parents or brother. I've just read a site at e;medicine this morning and for the first time I've read that it can be sporadic and not all cases are Keratin 17 mutations but I've not seen that before and the genetic physicist claims this won't be the case. I am either the first one to start it off in my family or maybe one of my family members does have the faulty gene but did not develop the disease. I hope some of this is helpful to some of you. As we know no-one is looking for a cure although Rox Anderson in America is developing a fat melting laser (free electron) which may hold out some hope. I e;mailed him about a year ago and he was amazing. He e;mailed back and offered to treat me for very little money on compassionate grounds but I would have to travel to America 3 times in 6 months which I could not afford to do or able to with 2 young children but I was very grateful to him. Bye for now.

Hi Andread... Long time no see.

It's good to hear that you are getting a lot of help to manage your condition. If you do not mind me asking, which hospital are you attending in UK? Or can you let me know the name of the dermatologist? Please let me know as I'm interested in visiting him as well... :-P

Hi there. His name is Vishal Madan and he's based at Salford Royal Hospital also known as Hope Hospital in Salford just outside Manchester. Where do you live?

Thanks so much for coming back and posting on all your experiences. THat's quite an update but I'm sure that a lot of people are very grateful for it. I am assuming that you live in Manchester? You dont' have to tell me if you don't want but i am just curious if you do. :)

Andreaed,

I haven't been back for a while, I am want_to_help but was having problems logging in. I was so surprised bc I saw that you have PCOS - so do I and I too, believe that this disease is hormonally driven. In my efforts to find a cure, I saw homeopathic and ayurvedic practitioners, and they both warned me to stay away from meat and soy due to the hormonal effects - I am vegan for the most part, I eat meat occasionally but I have to believe that there is a connection, no matter what doctors say. I also think that doctors prescribe and dismiss - they are looking for ways to treat but not prevent a disease, so I really do not feel they have given the hormonal sources enough review.

That's awesome that you have a doctor who is willing to treat all of your cysts - can I ask if you feel they are all/mostly removed? How would you rate your satisfaction with this co2laser + volksmans spoon approach? I'm not familiar with it but it sounds interesting.

I'm sorry I forgot to tell you that I live in the US, in Connecticut. I am not sure if it would be possible for me to recommend this doctor here, but I'm glad to hear it worked out for you. How are you feeling now?

Hi Gang,
I'm so glad I found this forum and that I'm not alone in the struggle with SM and Indifferent/Non-chalant Doc's. I'm a 43yo Afr-Amer female and have had this since about 12yo. This really must be one of the Rarest disorders around! Not only have I ended up having to educate Doctors about it or wait for them to "look it up" - In my 43 yrs with it I have NEVER laid eyes on another soul with this thing! And believe me - I look for it everywhere!
I've found that a #11 blade/lancet allows me to peirce the cyst deeply enough that I can just pop them out with a little push. I have the black seed-like ones and the fleshcolored oily ones and the #11 blade works great for me on both - I puncture the oily ones and squeeze out the fluid and the harder black ones, I can push the blade in deep enough (about 3-7mm depending on size) to get an opening for them to pass through freely. I do get hyperpigmentation but it's worth it to me to get them out and I haven't seen any returns of them. Also, I'm lucky that I don't keloid but blade is thin so may not harm most.
I've decided to look into plastic surgeons in NYC/NJ area to see if any would be interested in case so I'll keep you posted on progress.

Listen, Even though this disease really, Really, SUCKS! - We are not alone as long as we have each other! The unbearable thing is when you think you are alone...and we are not! Later for the Doctors who won't help us - we'll help ourselves! Together!