1. Community
  2. Symptoms
  3. Sweating

Craniofacial Hyperhidrosis (severe head and face sweating)

Posted , 6 users are following.

Rsmensen
Rsmensen

There are tons of forums out there for hyperhidrosis but the majority of poster have excessive hand, feet or armpit sweating. I find myself weeding through to see if anyone is talking about excessive head, face and/or neck sweating - craniofacial hyperhidrosis. We face (pun intended) a different kind of embarrassment from those with sweaty hands and feet. Not to minimize anyone's issues. But it is different. 

I'm a 53 year old female and I've had craniofacial hyperhidrosis (severe sweating of the head and face) for most of my adult life. I've been to doctors. I've tried the medications. I've tried just about everything but no relief. I can't wear makeup, I despise getting dressed up when I know my clothes will be soaked in 20 minutes. But most of all, I hate having to try to convince people I'm not some kind of crack-whore  eek.

The best way I can describe this feeling is claustrophobic. When the temp in your house is 60 degrees and you're laying naked under the ceiling fan set on high and you still can't stop sweating, it feels like you'll never stop and you're trapped. I envy people that are always cold. I'd gladly put on more clothes but I can only get so naked. 

Last week I went to see a thoracic surgeon. I had to wait in the exam room for 45 minutes but that turned out to be a good thing. Because as I sat there, doing absolutely nothing, I started sweating. And like most of you have described, once it starts, there's no stopping it. The doctor came in and shook my hand and said, "whoa, you got a problem!" He noted that my hands were completely dry but he had never seen anyone sweat so much on their head and face. I told him to step back because sometimes it's projectile sweating  redface . 

Anyway, he told me he could help me by doing a bilateral sympathectomy, also known as ETS, endoscopic thoracic sympathectomy. It's a relatively straight-forward procedure where they interrupt the sympathetic nerve chain around the top of the 2nd or 3rd rib. It's minimally invasive but not without risk. Get more info at http://www.sts.org/patient-information/other-types-surgery/hyperhidrosis. I've been reading up on it and have found that it has been miraculous for some who have undergone the procedure while it has destroyed the lives of others. 

​I guess it's a personal decision but I think I'm going to do it. I'm tentatively scheduled for 10/6/2015. I'll write back and report on the results. In the meantime, anyone else done the surgery, and if so what were your results?

1 like, 7 replies

7 Replies

  • Ellie1943
    Ellie1943 Rsmensen

    Posted

    Hi, I've had this problem for most of my life too, I'm now 72. I would be interested to know if the procedure was successful. You put the date as 10/6/2015. Does that mean June 10th or October 6th? People seem to use different ways of writing the date. If it was June I guess you've already had the OP and hopefully recovering now.

    Best Wishes Ellie rolleyes

    • Rsmensen
      Rsmensen Ellie1943

      Posted

      Sorry, I'm in the U.S. So it's coming up on Oct 6th.
  • jlp72
    jlp72 Rsmensen

    Posted

    I have not had the operation but I want to wish you the best of luck. I'm a 43 yr old female suffering from the same thing and it's so embarressing. As I sit here in my air conditioned apt my neck and head are wet and sweaty. I hate showering just to get out and begin sweating all over again. I don't even want to go out with my family. We go to the beach, I drip sweat just getting my towel down on the sand. sad

    I will be looking forward to your recovery posts. Best wishes to you!

  • michelle05386
    michelle05386 Rsmensen

    Posted

    Hello.  I hope the procedure went well for you and was not uncomfortable and that you are recovering nicely.  I am the same sex and age as you and have exactly the same problem.  I have to have a fan blowing in my face all the time for comfort.  I crop my hair shorter and shorter all the time because I can't stand it.  I'm anxious to know what the results are of your test and what your doctor can do for you.  First and foremost though - I wish you all the best and hope you are OK and that the test did not hurt you in any way.

    Michelle in Canada

  • Rsmensen
    Rsmensen

    Posted

    Today is Nov 7, 2015 and it's been 1 month since my bilateral sympathectomy. I wanted to wait at least a month before I posted anything so I could give a better picture of the results. Because I had recently undergone thoracic surgery for TOS, the surgeon had to work around some scar tissue which resulted in a 3 hour surgery as opposed to the normal 1 hour. I also had to stay in the hospital a couple of days as I had to have chest tubes for drainage. Most symathectomies are don on an outpatient basis so you go home the same day. 

    The procedure was an instant success. I have sweated on my head or face a little bit but only because I was exerting myself. So basically just normal sweating. I have not experienced any compensatory sweating, excessive sweating in another area of the the body, which is the most common side effect of this procedure.

    But this has not been a pain-free experience. I have had horrible chest and rib pain. It's an excruciating pain that wraps around my rib cage from just under my arms to the bottom of my ribs. And my upper torso, arm pits and around the back of my biceps is completely numb. The Dr said this can last up to 6 months. It is quite debilitating.

    On my first follow up visit with the surgeon a week after the procedure, I had gained 16lbs. Obviously this was fluid retention. He gave me a 3 day course of Lasix to eliminate the edema. It got rid of most of it but it still took a couple of weeks before I didn't feel like the the Pillsbury Dough Boy.

    If the chest pain (also known as intercostal neuralgia), which is very common in any kind of chest surgery, Goes away soon, I will call the surgery a success. It feels slightly better than it did in the beginning, but still very painful. 

    I would hesitate to recommend this procedure only because there are a lot of horror stories about it on the net. But if you are interested in pursuing it, find a surgeon with experience a ask for some references or testimonials from other patients who have undergone the procedure with that Dr. Remember, this surgery is about cutting a sympathetic nerve next to your spine. A lot could go wrong.

  • Ellie1943
    Ellie1943 Rsmensen

    Posted

    Hi. Thanks for the update. I'm not sure I want to go through that at my age but I hope it works for you in time. I have lots of pain from OA in spine so don't think it would be advisable anyway. All my best wishes that it's successful in your case. Keep us posted! rolleyes
Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.