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Thread: Type 1 rosacea/KPRF flushing and considering ETS - link to research paper

  1. #1
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    Default Type 1 rosacea/KPRF flushing and considering ETS - link to research paper

    Hi, I'm new to the forum but have been managing my flushing symptoms for about 15 years (man in my 30s), as well as fixed redness which is less of a concern. I'm wondering if anyone fight type 1 rosacea has had ETS and can report back on flushing symptoms, or has anyone researched it a lot?

    I was diagnosed by one dermatologist as having erythematotelangiectatic rosacea in the past and more recently by another as actually KPRF. I flush with heat, sun, stress, alcohol and going from cold environments to warm environments. In my twenties I had social phobia related to the effects of severe blushing and over the years have developed facial hyperhidrosis as well. I've had CBT, tried SSRIs and SNRIs, done CBT and used propranolol, and in order to work where I constantly meet new people and experience triggers like stress, heat and temperature change, I have a good makeup "camouflage" which has been the most important step I've taken. With all that I still flush and blush (and sweat excessively facially when particularly stressed).

    Onto ETS surgery: a search here brings up a lot of old threads which were killed off by horror stories of complications, but I think these have to be put on perspective.

    E.g.

    1. A paper was published about a case of severe "neurogenic rosacea" being treated by ETS in 2012, which "resulted in a complete and sustained resolution of her redness and symptoms". "Clinical studies suggest that patients with rosacea have a defect in their brain-cooling vascular mechanism, resulting in an exaggerated sympathetic nerve response and consequent flushing. Furthermore, thermoregulatory shunt vessels of the face are controlled primarily by sympathetic nerves. It has been noted that patients with a unilateral lesion in the sympathetic pathway to the face have impaired thermoregulatory sweating and flushing on the denervated side. Taken together, these findings suggest that cervical sympathetic out-flow may be a promising therapeutic target for patients with neurogenic rosacea."
    https://www.ncbi.nlm.nih.gov/pubmed/22351842

    2. UK's NICE guidelines suggest ETS as a treatment for primary blushing (not flushing) where other treatments have not worked and it is debilitating: https://www.nice.org.uk/guidance/ipg...ecommendations

    3. The experienced surgeon I've seen quotes that 70-90% of patients do not have compensatory sweating, 10-30% do have it but do not regret the surgery, and 1 in 50 regret the surgery because of compensatory sweating. He does T2 and T3 sympathectomy. He notes the procedure does not affect heat or exercise related redness as that's often a local cutaneous reflex. (I wonder if that's the case for someone with primary blushing, but if there may be some benefit in those who also have type 1 rosacea or KPRF related flushing where there seems to be aberrant SNS activity)

    It may be a good idea in my case as I have facial hyper-hidrosis and blushing which are sympathetic nervous system-driven, and I don't want to give the impression it is a blanket treatment for flushing (anecdotes on this forum suggest it did nothing for them..).

    Any thoughts?

  2. #2
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    Quote Originally Posted by sennes View Post
    Hi, I'm new to the forum but have been managing my flushing symptoms for about 15 years (man in my 30s), as well as fixed redness which is less of a concern. I'm wondering if anyone fight type 1 rosacea has had ETS and can report back on flushing symptoms, or has anyone researched it a lot?

    I was diagnosed by one dermatologist as having erythematotelangiectatic rosacea in the past and more recently by another as actually KPRF. I flush with heat, sun, stress, alcohol and going from cold environments to warm environments. In my twenties I had social phobia related to the effects of severe blushing and over the years have developed facial hyperhidrosis as well. I've had CBT, tried SSRIs and SNRIs, done CBT and used propranolol, and in order to work where I constantly meet new people and experience triggers like stress, heat and temperature change, I have a good makeup "camouflage" which has been the most important step I've taken. With all that I still flush and blush (and sweat excessively facially when particularly stressed).

    Onto ETS surgery: a search here brings up a lot of old threads which were killed off by horror stories of complications, but I think these have to be put on perspective.

    E.g.

    1. A paper was published about a case of severe "neurogenic rosacea" being treated by ETS in 2012, which "resulted in a complete and sustained resolution of her redness and symptoms". "Clinical studies suggest that patients with rosacea have a defect in their brain-cooling vascular mechanism, resulting in an exaggerated sympathetic nerve response and consequent flushing. Furthermore, thermoregulatory shunt vessels of the face are controlled primarily by sympathetic nerves. It has been noted that patients with a unilateral lesion in the sympathetic pathway to the face have impaired thermoregulatory sweating and flushing on the denervated side. Taken together, these findings suggest that cervical sympathetic out-flow may be a promising therapeutic target for patients with neurogenic rosacea."
    https://www.ncbi.nlm.nih.gov/pubmed/22351842

    2. UK's NICE guidelines suggest ETS as a treatment for primary blushing (not flushing) where other treatments have not worked and it is debilitating: https://www.nice.org.uk/guidance/ipg...ecommendations

    3. The experienced surgeon I've seen quotes that 70-90% of patients do not have compensatory sweating, 10-30% do have it but do not regret the surgery, and 1 in 50 regret the surgery because of compensatory sweating. He does T2 and T3 sympathectomy. He notes the procedure does not affect heat or exercise related redness as that's often a local cutaneous reflex. (I wonder if that's the case for someone with primary blushing, but if there may be some benefit in those who also have type 1 rosacea or KPRF related flushing where there seems to be aberrant SNS activity)

    It may be a good idea in my case as I have facial hyper-hidrosis and blushing which are sympathetic nervous system-driven, and I don't want to give the impression it is a blanket treatment for flushing (anecdotes on this forum suggest it did nothing for them..).

    Any thoughts?
    Hi

    I have had ETS surgery for type 1 rosacea flushing and it is the worst decision that i ever made. In my opinion this surgery should be banned, as it has no effect whatsoever on flushing, but instead gives you more complications and problems to deal with such as compensatory sweating and increased core temperature. Please don't even consider it as it is not the answer.

    kind regards

    burner.

  3. #3
    Senior Member laser_cat's Avatar
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    Maybe look into botox or stellate ganglion blocks.

    I was more inclined to try these over ETS since far less risky / not permanent. Botox helped my ear flushing some (when it is injected into side burn area). I am unclear as to whether a series of SG blocks would be needed to retrain the nerves.

    I sure hope you get relief one way or another.

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    Two of the most experienced rosacea doctors in the UK advised me strongly against ETS treatment, having seen the negative impact on patients they had been looking after who got it done by other doctors. IPL and laser seems very risky for rosacea, but ETS has very few success stories for rosacea.


    The things that work most frequently for Type 1 rosacea are a combination of anti-flushing medications and diet. It may seem sensible to try one medication at a time, but actually may you need to use a combination to get the best effect if your flushing is bad. The medications that are likely to help is some combination of clonidine or moxondine, mirtazapine, hydroxychloroquine, mepacrine, propranolol. Just because one of these does not work does not mean that the right combination will not help significantly.


    Diet is also very important, see for example 'The Plant Paradox' by Steven Gundry.


    Botox can be helpful, although the injections can damage the delicate rosacea inflamed vessels, so you need someone very trustworthy and experienced to do this - but much lower risk than ETS surgery.

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