I'm new here: Treatment Explorations for Steatocystoma Multiplex

[amir1992h]

Hello my name's Amir and I was just diagnosed with steatocystoma multiplex 2 weeks ago.

I have had it for about 5 years unknowingly, thinking it was a rash or something else but it turns out as many of you know already to be a benign genetic disorder.

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I'm making this post to try to learn, share knowledge, ask questions to others regarding this condition and managing it. Upon learning that I have it, I've decided to actively start treatment through laser surgery soon.

What I've noticed a lot across the internet and even with some of the doctors I've met with (currently a total of 2) is that very little involving *scientific-method* has been documented or recorded in treating the condition. I thought this was very strange and needs to be resolved. To start however, I've learned that smooth lasers, and fraxel lasers can destroy the cysts with a high rate of preventing reoccurance...however I'm not sure if "reoccurance pertains to just the individual cysts or that generalized region of the body.

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I'll begin with these:

1.) About my biologic & career background

2.) *Past and Current observations with my S.M. (steatocystoma multiplex)

3.) *Patterns noticed in spread

4.) *(Most importantly) Treatment being sought out

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1.)

My Biology:

I'm currently 23 years old, born and raised in America, mostly African American genetically but mixed with other European genes. Because of this my skin complexion is a light to mid-tone brown in color.

No one else in my family has this condition so it was a sporadic mutation for me.

I look like a normal healthy person, you can not tell I have it unless you see my arms or look very closely at the center of my chest.

My Career:

I've received my education at an engineering school and studied within the arts and sciences since I was a little boy. I am a designer working with a well-known company but just getting into my career.

2.)

My experience with S.M. started when I was around the age of 18 and were only a few small cysts around my left wrist (not irritating me, I thought they were a possible rash, not very noticeable unless felt or examined within a 3ft radius). Over about 2 years (age 20) it spread slowly to both my fore arms, this was predominantly on the under-side of them. I'm 23 turning 24 this year (so 3.5 years later) its spread from under my forearms to both my lower deltoids, central sternum, a few on my inner thigh and abdomen. It is to be noted that the quantity is much smaller in the newer areas, close to 10-15 small ones approximately. I'll provide thorough details in a following post. It is also to be noted that this is without any treatment.

3.)

The patterns I've personally noticed in my own case is that mine had seemed to originate from my arms...but from what I've read elsewhere for other cases, it's normally been observed around the chest, back, or groin first... Thankfully it looks like laser-surgery is a viable option for removing those cysts in those areas, however at varying costs.

4.) I've been referred to seek laser surgery treatment at a location in my city. I saw images of one patient who was treated with this option who had it pretty concentrated all over her abdomen (lower chest to lower abs, a few hundred or so). While it was noticeable before the treatment, after her skin (which was white) seemed significantly better...as in normal looking to about 75% if not more. I'd imagine this is not a permanent solution, but I'm seeking more data on her status post the procedure. I'm currently deciding on which area of my body to treat first with this option. I'll be recording and collecting more data to try to learn more about combating this condition in the means of maintaining "normal" looking skin, even if it's just a little patchy in color some areas or if bump appearance can be better controlled.

I think examining the rate of occurrence, quantity, and locations of occurrence under the skin via some type of x-ray or body scan is important for thoroughly monitoring the condition...predicting trends, patterns, etc. How to do so is a different question, one that I'm seeking an answer to without hurting monetary spending too much.

All ideas, stories, and thoughts are welcome. I will be posting again soon.

#skin #treatment #surgery #laser #steatocystoma #multiplex

[Olivemay64]

Sadly, I know nothing about this condition. Just to say how much I admire you for going full pelt to find out and alleviate this condition. I hope you get lots of positive help. My only advice is ,do not go down the road of quack cures,they are a waste of time,hope and money. I would have my first laser treatment in a place that is hidden under clothes just in case there is an adverse reaction. Good luck. Keep us informed.

[amir1992h in reply to Olivemay64]

Olivemay thank you very much.

Your advice and input is very helpful and I'll start there first.

No quick cures, etc.

Today I have received the documentation on the former patient who was diagnosed with this condition and treated for the region among her abdomen.

This was back in 2012 when this laser treatment was performed.

I want to know what her diagnosis is like presently in the means of determining whether there was a slower rate of growth for any new cysts in that area or even if there were any at all.

[Hidden]

surgery is not an ideal option .When a tree is cut it will grow again unless it is rooted out . So you have to try for finding out the root cause and see that gets removed .Homeopathy cure is the best option.

[amir1992h in reply to Hidden]

Agreed Bhaswathy. However *minimal invasive* surgery seems to be a good "short term" treatment. I've heard of results lasting as long as a year...potentially longer. I'm studying ways to find a "semi permanent" cure for certain parts of the body, not all.

The highest level of the problem for SM is genetic. This is very challenging to find a solution to, however as for where the cysts form, they're native to the sebaceous glands, located within the pores of the epidermis.

What if the function of the sebaceous glands is better analyzed (for those of us who know, they are needed for oiling the skin, immune features, etc) in the means to find a way to eliminate sites of origin where the problem appears? Doing that however in moderation while compensating for the affects that follow so long as they are manageable?

That's what I'm investigating in the background, hypothesizing a semi-permanent solution on a limited amount of areas of the body while also examining minimal invasive procedures that cause no scaring for the low-level, shorter term treatment.

[Hidden in reply to amir1992h]

if the effect of minimum invasive surgery is for only one year , what is the point in going for that .Homeopathy has got beautiful cures for skin problems . Go for that .