Steatocystoma Multiplex cause, treatment and diet for preven

andreaed · Newbie Joined: 14 Jul 2007 Posts: 9

Hi Medseeker. Good to hear from you. It's good to know more than one of us is searching for an answer to this horrid disease because I'm sure no-body else is. That's the downside really; as it is not life-threatening and so rare, it's not worth anyone doing any research. My hope is the new free electron laser that Rox Anderson is developing which melts fat under the skin without harming the upper layers known as selective photothermolysis, although this is a few years away yet. I'm really disappointed at the response you've had from one of his assistants. The e:mail he sent me was really supportive and helpful. I wonder if he himself actually got to see your E:Mail. You might be best trying on the RR Anderson e:mail address which is where I sent mine. It was interesting to read eddieee post about Lac-Hydrin. I'm interested to see what happens there as I cannot work out how it can help as the cysts are deep under the skin and I don't know how anything topically applied to the skin can work but we shall see. Please keep in touch with any developments. Bye for now.

eddieee · Newbie Joined: 02 Nov 2007 Posts: 2

Hi people, forget about the Lac-Hydrin.. I've been using it straight for a few weeks already but no improvement seen.

Maybe all of us can work together and try the other topical retinoids like Tazorac, Retin-A, Renova, Avita etc.. and report back any results we experience.. From what i know Tazorac is not available in Singapore, so we gotta depend on Chinajumbo, Medseeker or Andreaed to try it..

For more info, just type Eruptive Vellus Hair Cysts in Yahoo and visit the eMedicine website.. That is where i got to know about the above mentioned drugs and their results with EVHC..

Like what Medseeker said, we really gotta depend on ourselves for a realistic treatment solution since this is such a rare skin problem. So what we can do now within our means is to apply the Trial & Error method and see if these topical retinoids work. If we dont try, we will never find out..

brams1 · Newbie Joined: 30 Nov 2007 Posts: 4

Hi medseeker i heard back from rox andersons assistant,ill try to send you these attachments.A midinfrared laser destroys the cysts under the skin,better results than the co2 laser and was used on a guys face who had severe hydrocystoma,looks exactly the same as steato,but cysts are in the sweatglands.This laser does not cut the skin but destroys the cyst ender the skin.If you want attachment you can email me direct as i dont know how to do it on this site

brams1 · Newbie Joined: 30 Nov 2007 Posts: 4

Dr Rox Anderson sent me some invaluable info about a laser
that has treated facial cysts with great success.The laser used
was a mid infrared diode laser 1450 nm,it destroys the cysts
under the skin without cutting the skin unlike co2 laser,this laser
combined with needle aspiration were prove to be effective.After years of research this laser and needle aspiration i think are the best method.Im in
Australia and cannot find anyone who has this laser,good luck.

Guest · Guest

Hi All
I too suffer from this annoying disease from age 13, living in India

I had undergone a Homeopathy treatment for Four months and I started to see new CYST not coming up. Also the size of the existing ones go down. Because I could not continue this medicine for a longer time as I travel frequently, I still have the cysts. After I stop the disease it is increasing. So decided to start it again.

Meanwhile I did CO2 laser with a Cosmotologist on the Face and scalp.
Good results. Little scar, but better than the cyst.

If any guys in US Europe don't have enough money please come to India and take CO2 laser treatment. It is Very cheap. The Cosmotologist I go is Dctor stidied in United states. So don't worry about the Quality.

It took 10000 Rupees for doing on face aand scalp.
In dollars, it is less than $250.

Martin

brams1 · Newbie Joined: 30 Nov 2007 Posts: 4

Hi Martin,i have alot on the forehead maybe 50 at about 1 to 2 mm.Are the results really good with co2 on the face,ive heard mixed reports about
scaring and pigmentation problems.also i was told that the co2 laser cuts
the skin to remove the cyst is it true?

victor_dsp · Newbie Joined: 13 Dec 2007 Posts: 2

Hi folks, especially to my fellow Singaporean comrades…

I’m in my mid 20s. Got diagnosed with this ill-fated condition few years back.

Been to the National Skin Centre aka NSC a few times already. For me, it’s fast becoming something like an installment you got to pay every 2-3 months. What they are doing for me now is to cut up the smaller ones on my arms and neck (visible ones) and then squeeze the crap out.

When enough new ones develop for me to hate myself enough, I’ll pay my installments. It costs around S$250 for around 10+ removed each time…

Aint Singapore aspiring to become some sort of medical hub? With all the talk about the laser treatments going around, a senior consultant at NSC actually told me that they do not have any of those laser treatments around… it’s NATIONAL skin centre yah?

Does anyone know whether such laser treatments are available anywhere in Singapore? Please share with your fellow ill-fated folks around… >__<

Speaking just a teeny weeny bit about the psychological effects of SM…
Since it has started to get quite bad (in the tens to a hundred on the chest and then some on the arms and neck), I have to come to terms with the fact that I probably have to spend the rest of my life alone. Cause trust me, even if you are able to hide it from your gf/bf at first, it’s emotionally painful when you have to come out in the open about your condition to him/her. Even if he/she says that they can live with it, you will constantly be gripped with the pressure of thoughts such as “Since I love her, given my condition, I will not be what is the best for her, shouldn’t I leave her”…

I reckon that to avoid this emotional trauma, I better accept this harsh reality of life sooner… Of course this is easier said than done. Many a time, when I am lying on my bed trying to sleep and this predicament comes to mind, it really sinks me to the abyss of God Knows Where… Haiz… I think the gist of this crap really lies in the psychological department…

Guest · Guest

Hi All,

I was diagnosed with SM beginning this year, after I read on it and learned more about it I was absolutely shocked that theres now cure and sufficent treatment for it....Even though it started developing when I started puberty around 13. Mine started out as huge nodule like pimples that would form on my chest. I also had alot of little fine bumps on my chest and face that resemble measles. The nodules on my chest were painful then theyd erupt over time like a pimple would. I just thought that I had a very bad acne problem and so did the idiot doctors. I even had a small cyst on my wrist that at 13 I really didnt know what the heck a cyst was so I just ignored it. I also had them under my underarm which I was told may had been caused by my deodorant. I actually popped the ones under my arm and they never grew back! Though I still do have one under my arm that Im leaving alone.. now that im more educated on this condition.

All of my cysts are mainly on my chest, Ive been blessed that I dont have alot of them on my chest and body like others may have but I am still affected the same physically, emotionally and mentally. I have had several cysts removed from my chest this year which left some ugly scarring from the stitches. Im a brown skinned African Amer. so scars are more visible than lighter tones. I dont reccomend surgical cyst removal to anyone with this condition. If I had known it would be healed this way I would have chosen to have them drained instead being that they may still grow back if removed improperly.

The dermos in the past have all seem to be very nonchalant of the SM condition....Im only 25 years old, my dermo scared me when she told me Id have to go to genetic counseling If I had planned to have children someday. She told me that in a very uncompassionate way and it seemed she didnt care at all. It seems like alot of the dermotologist arent eager to help you because they dont know what to do, and since they arent dealing with the disease, so there like just live with it. Its like they just completely dont have any answers at all and thats the most stressful part. I understand that this is something that is heriditary but I believe God controls the fate of that.

I live in America, and you dont see or hear about too many cases of this rare disease. I believe those who do have it here hide it and just deal with it which is why there hasnt been any eagerness for doctors to find a simple treatment for something as simple as a lump of fatty cells under the skin.

My goal is to get enough money or fame oneday where I can bring this disease to the attention of the world at large for those of us suffering with this condition.

In response to all the negative comments made on this page, you guys all need to maintain a positive energy for eachother because its enough negativity in the world as it is. Things could be alot worse. There is some kind of treatment out there for SM , we just have to keep searching. My advice to everyone until there is an actual treatment is to take great care of you body, dont drink and smoke, excersise regularly and eat healthy!

Id also like to know if anyone has had a draining procedure for their multiple cysts and how effective is it? Does it leave scars? and since its considered a cosmetic skin condition would insurance cover draining?

Thanks

Guest · Guest

andreaed · Newbie Joined: 14 Jul 2007 Posts: 9

Hello to all the recent newcomers. I'm not sure if you've all read back to my first postings, but I live in Manchester, England and I have regular treatments with CO2 laser at a local leading dermatology hospital. I saw my derm last week. I've been on Roaccutane 20mg per day for the last 12 months. My derm is hoping this will stop new cysts forming and seems to think it is working although I think at best it may be slowing the process a little. He has booked me in for more laser treatment in February 2008. Yes it does cut through the skin and he then has to dig/squeeze the contents and remove the sac but it does heal pretty much without scarring. If I left the dressings on for as long as I am supposed to ie about 2 weeks, then there would be no scars at all, but after a few days I become allergic to the sticky tape and cannot tolerate them so end up removing them and letting them scab over which leaves a tiny white mark on some (not all). The treatment here is free although he has commented on the cost and may decide not to treat me indefinitely (although he has now been doing this procedure one or twice a year for the past 6 years or so). I am now 36 years old and have 2 daughters aged 7 and 8. I am starting to seriously panic about the chances of having passed this onto them. I am always looking for that first lump and it breaks my heart. I am praying to God that my SM is a sporadic case as none of my family have it and it may not be a hereditary case. Do all of you have family members with it? I mentioned this to my derm last week and he has now referred me to another hospital for genetic counselling. Not sure what they'll do exactly. I know the chances are 50/50 but they might be able to tell me if I have the inherited type (which for those of you who don't know is a genetic mutation of the Keratin 17 gene). Keep in touch.

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