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Steatocystoma Multiplex cause, treatment and diet for prevention thread.

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This message is for charisma 77.... Are you referring to a lancet to cut and open, then the vein hook to remove? I've got four removed and the last two didn't leave a raised scar, just a little discoloring and this was about 9-10 months ago. Did you have them removed this way? I have about fifty of them scattered throughout my chest and was ready to make the big choice and have the Doc. remove the rest against his suggestion. Who is your doctor? Mine is named Dr. Strick who works out of U.C.L.A., a college in Los Angeles California. Do you live in the U.S.? On the fence of what to do...... Much, Much thanks and I look forward for some uplifting feedback/advice. And to everyone else out there with this disease, let's all think positive and vision a cure being found and announced, in the meantime enjoy life and know it could always be worse.
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My doctor and I have never used the vein hook to remove the cysts on my body. The doctor would just use a 30 gauge lancet to pierce and lift the cysts out of the skin. Sometimes she would use a comedone extractor for the deeper cysts, but using the comedone extractor to excess would leave marks on my skin that would take longer to heal and create larger areas of hyperpigmentation. You generally want to remove them when they are "ready". There's a point when the cysts get really close to the surface of your skin and you can literally just use the lancet to get under them and lift them out. I visited several doctors before I found one that was able to diagnose me and cared enough to take the time to remove them one by one. My doctor's name is Dr. Jodi Fiedler at the Center for Dermatology in Coral Springs, FL. They have a website that you can google. I don't think we're allowed to post links to other websites or phone numbers on here. I just looked at their website and it is quite cheesy :-) But she is an extremely intelligent doctor, so don't let the bad website discourage you from going there :-) I know it's on the other side of the country for you, but if you're anything like me, you'd pay any amount of money to get rid of those little things under the skin.
I know you said that you are on the fence about what to do, but despite what some of the "medical literature" says, these things do not spontaneouly go away. They have to be removed. The body does not reabsorb them. They will stay in your skin forever if they are not removed. I had about 10 of them on my stomach that had been under my skin for 13 years!!!!!! And then I found Dr. Fiedler :-) Dealing with the subsequent pigmentation problems after they are removed is EASY! I hope this helps.
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I have been meaning to post for a long time as I come to this forum every so often to read, and I appreciate everyone who has given their testimonials and advice. I am a 33 year old asian woman, and I first discovered SM around the age of 13, I read that it has something to do with your hormones. It is largely on my neck, chest, and bottom, with a few random cysts on my arms (pretty minimal there). I have seen 3 dermatologists, including one of the TOP dermatologists in NYC, who was dismissive and basically told me to live with it and prescribed me some hydroquinone for the scarring. I then saw another famous derm at Harvard (at the recommendation of this blog) and he was very pleasant and helpful, but he used some lasers which had the purpose of "melting" some of the my larger cysts but did not really work. :-( Finally, I went to a patient aesthetician in NYC who has painstakingly removed each one (probably in the 100s) with a needle. I am now rid of MOST of the small black ones, but I have larger flesh-colored ones that are filled with yellow liquid (keratin) that I just drain every once in a while with needle (they refill). I have a lot of post-inflammatory hyperpigmentation and my aesthetician has given me a series of acid peels, jessner peels, and TCA peels. I have been undergoing this process with her for over two years and I am hoping that I will feel "normal" within the year, as I now have most of the more unattractive spots removed. I have so much info to share and have researched this disease to death - I would add I have tried everything, including vegan/vegetarian dieting, omega 3s, fish oil, flax oil, every time of skin cream on the market. The only thing that has worked is the manual removal with needle and drinking a LOT of water, which seems to speed the healing process. I'd be glad to help anyone with further questions. I have suffered from this disease and I am angry with the doctors who just prescribe and dismiss, I am now convinced that modern medicine is not always the "cure", and the key is finding a doctor or aesthetician who is willing to do the painful and time-consuming extraction process. Nothing makes me happier than seeing these suckers come out, they are like small, oily sesame seeds (dried keratin I suppose). Good luck, there is no reason for us to suffer!!!
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want_to_help,


Why didn't the lasers work? I did e-mail the same derm at Harvard and he was hopeful that Smoothbeam/fractional would treat SM. Did you give up on treatment prematurely or did you continue but saw no improvement? I was looking forward to meeting the same derm but now I'm a little bit disappointed...Let me know.
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want_to_help wrote:

I have been meaning to post for a long time as I come to this forum every so often to read, and I appreciate everyone who has given their testimonials and advice. I am a 33 year old asian woman, and I first discovered SM around the age of 13, I read that it has something to do with your hormones. It is largely on my neck, chest, and bottom, with a few random cysts on my arms (pretty minimal there). I have seen 3 dermatologists, including one of the TOP dermatologists in NYC, who was dismissive and basically told me to live with it and prescribed me some hydroquinone for the scarring. I then saw another famous derm at Harvard (at the recommendation of this blog) and he was very pleasant and helpful, but he used some lasers which had the purpose of "melting" some of the my larger cysts but did not really work. :( Finally, I went to a patient aesthetician in NYC who has painstakingly removed each one (probably in the 100s) with a needle. I am now rid of MOST of the small black ones, but I have larger flesh-colored ones that are filled with yellow liquid (keratin) that I just drain every once in a while with needle (they refill). I have a lot of post-inflammatory hyperpigmentation and my aesthetician has given me a series of acid peels, jessner peels, and TCA peels. I have been undergoing this process with her for over two years and I am hoping that I will feel "normal" within the year, as I now have most of the more unattractive spots removed. I have so much info to share and have researched this disease to death - I would add I have tried everything, including vegan/vegetarian dieting, omega 3s, fish oil, flax oil, every time of skin cream on the market. The only thing that has worked is the manual removal with needle and drinking a LOT of water, which seems to speed the healing process. I'd be glad to help anyone with further questions. I have suffered from this disease and I am angry with the doctors who just prescribe and dismiss, I am now convinced that modern medicine is not always the "cure", and the key is finding a doctor or aesthetician who is willing to do the painful and time-consuming extraction process. Nothing makes me happier than seeing these suckers come out, they are like small, oily sesame seeds (dried keratin I suppose). Good luck, there is no reason for us to suffer!!!


How can I come in contact with you?My space username is emilsmcro.... :)
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Yes, I did the laser - on about 3 or 4 of the bumps. I feel like all it did was open a lesion, I waited about a month or so and saw no improvement, after which i finally extracted the bumps myself. I feel like if anything, it brought the cyst to the surface which made it easier to push out the contents with a lancet. But I still have scarring, it heals slowly. But I would rather have the slight discoloration, over the bumps, personally. I will see if I can contact you on myspace :-)
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Emilsmcro, could not find you at myspace, if you can post an email or IM address I will contact you. I also don't want to get you down about the Harvard doc - I feel like maybe if I had waited a few more months, perhaps there would have been some more results but I was not patient. I think I waited about four weeks or so? I have been thinking about seeing him again just to let him know the results so he can have the feedback. He definitely knows more about SM than any other doctor I spoke with, which was also comforting. It's such an obscure disease that I think few derms really understand how to treat it.
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want_to_help,

This is the same guest who asked you about the Harvard derm here.

I have some questions and also interesting ideas of my own. I have too much going on with my life now but I want to keep in touch with you since you look like you've gone through quite a lot.
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want_to_help wrote:

I have been meaning to post for a long time as I come to this forum every so often to read, and I appreciate everyone who has given their testimonials and advice. I am a 33 year old asian woman, and I first discovered SM around the age of 13, I read that it has something to do with your hormones. It is largely on my neck, chest, and bottom, with a few random cysts on my arms (pretty minimal there). I have seen 3 dermatologists, including one of the TOP dermatologists in NYC, who was dismissive and basically told me to live with it and prescribed me some hydroquinone for the scarring. I then saw another famous derm at Harvard (at the recommendation of this blog) and he was very pleasant and helpful, but he used some lasers which had the purpose of "melting" some of the my larger cysts but did not really work. :( Finally, I went to a patient aesthetician in NYC who has painstakingly removed each one (probably in the 100s) with a needle. I am now rid of MOST of the small black ones, but I have larger flesh-colored ones that are filled with yellow liquid (keratin) that I just drain every once in a while with needle (they refill). I have a lot of post-inflammatory hyperpigmentation and my aesthetician has given me a series of acid peels, jessner peels, and TCA peels. I have been undergoing this process with her for over two years and I am hoping that I will feel "normal" within the year, as I now have most of the more unattractive spots removed. I have so much info to share and have researched this disease to death - I would add I have tried everything, including vegan/vegetarian dieting, omega 3s, fish oil, flax oil, every time of skin cream on the market. The only thing that has worked is the manual removal with needle and drinking a LOT of water, which seems to speed the healing process. I'd be glad to help anyone with further questions. I have suffered from this disease and I am angry with the doctors who just prescribe and dismiss, I am now convinced that modern medicine is not always the "cure", and the key is finding a doctor or aesthetician who is willing to do the painful and time-consuming extraction process. Nothing makes me happier than seeing these suckers come out, they are like small, oily sesame seeds (dried keratin I suppose). Good luck, there is no reason for us to suffer!!!



Hey, I actually have met emil on a old myspace forum that I created for people w/ SM. I live on long island and if you could mention the new york doctor who has taken them out, i would be much oblidged.
I have always tried vegetarianism and flaxseed oil as well. I have been vegetarian for two years for this very reason but last night i just said, "screw it" and had myself a chicken sandwhich(haha). The master cleanse did help my regular acne stop but i was limited to only water, lemon, cayenne pepper and miso soup.
I am a African American/West Indian female so i go back and forth on whether i should get them removed. Keloid skin is common amongst darker skin. I must be careful. I have been to three dermatologist(including one female who went to UCLA) but they all prescribe the same medications. I have to tell them to just do it and i will worry about the scarring/hyper pigmentation later. i can fix that with pure aloe vera and drinking water.
I am looking for a new dermatologist since i moved. i am printing out medical reports so the doctor will know it is possible to remove without scarring. i have read about laser procedure and also excision by needle.
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Guest wrote:

want_to_help,

This is the same guest who asked you about the Harvard derm here.

I have some questions and also interesting ideas of my own. I have too much going on with my life now but I want to keep in touch with you since you look like you've gone through quite a lot.



i don't feel comfortable posting my email but you can let me know how to reach you! sorry I check this forum every once in a while so you are welcome to post here as well.
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Hey folks,

I'm a 28-year old American-born Indian male that has had SM since childhood. I noticed that a number of you mentioned being able to reduce/eliminate the scarring and hyperpigmentation that results once these cysts come to the surface, and I'm wondering what methods you all use. I have a large number of cysts on my chest and back, and a few on my neck and arms. 99% of the ones that come to the surface end up causing scarring and hyperpigmentation, which has left my back and chest in pretty poor shape, so I am hoping to find ways to alleviate these issues. I am also wondering if any of you have found ways to reduce or avoid inflammation. What typically happens with my cysts is that they will be benign for long periods of time, but every so often one will get inflamed and rise to the surface through what is usually a long and painful process. I've never been able to correlate these inflammations with any foods or environmental factors, so I feel as if I have no control over when they will happen.

I have a trip to Europe coming up in a couple of months and a buddy desperately wants to hang out on the beaches there, which makes me very apprehensive. Not only am I worried about my existing scarring but also the chances of having a flare up while on vacation, in which case having band-aids on my chest/back would be pretty embarrassing. Any advice would be much appreciated!
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I am a Mediterranean type and had steatocystoma since early adulthood. It IS possible to have them removed without scarring, it takes a while to heal (mine took 8 weeks) but at the end it goes away! The problem is not the scarring, it is to find a doctor who is willing to do the excision. I have no idea why they find it so boring to remove them... yes it may be in high numbers and yes, it may come back in a few years... but that is like not cleaning the house cos it will get dirty again anyway... nonsense. Having them removed PROPERLY will not cause scarring or hyperpigmentation...
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Hey everyone,

I regularly followed this forum a couple of years ago, but stopped when I thought the thread had died.

I am a Canadian-born Asian, and I too suffer from this condition. Except with most of you, who can quantify your cysts, I literally have them all over my arms, torso, and parts of my legs. They are definitely too many to quantify.

As such, I have not been able to find a doctor who has been willing to excise these cysts for me.

I have been on accutane for about 6 months now, and it does not appear to have any effects.

Scarring is very prominent in lighter skinned individuals, and I am very worried about exploring the options of CO2 lasers, surgical procedures, and so forth, as the simple biopsies have already left hyperpigmentation marks on the my skin.

My doctor also seems to be unfamiliar with such procedures mentioned in this forum, such as the vein hook, and other surgical procedures that claim to "leave no scars".

Does anyone know of any documented research where successful extractions have been done for patients suffering from hundreds of cysts?

Good luck everyone.
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So, my son who is 7 has steatocystoma with only one cyst that occurs on his face between his left eye and the bridge of his nose. His dermatologist is recomending that my son see a plastic surgeon for the removal. Any tips or suggestings of questions to ask or topics to discuss at the consult? I am really bugging out because the cyst is so close to a nerve on his face and I am scared about any possible facial nerve damage that surgery will cause :-(
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