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I am thinking this is En Coup De Sabre...

en coup de sabre localized scleroderma indentation on forehead

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#1 Athora80

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Posted 28 May 2014 - 10:13 AM

So my life has been hectic, we moved across the country 6 months ago and are trying to adjust to the new place. I think my indentation line on my forehead started before we moved, it was barely apparent. I think it is becoming more apparent and I tried to take the best picture I could. It comes across from my hairline to the start of my right eyebrow. You can really only see it at a certain angle and in certain light. I have no other symptoms other than my right eye aches sometimes but not too bad. I am going to make a doctor appointment for my physical exam and bring it up then. Is it likely he won't know what En Coup De Sabre is? Will I most likely be referred to a Dermatologist? Also, I am almost 33 years old and female, never shown any signs of this before sometime a few months ago and even then I thought the indent was weird but not alarming...until I googled it. Is there any chance it could be something else? Aging? I seem to worry a lot anyway so my husband thinks this is no big deal. I thought I would come here while I wait to see the doctor. If anyone has any advice for me I would appreciate it :)



#2 Athora80

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Posted 28 May 2014 - 10:50 AM

Just figured out how to get a picture on here, hehe. Here is the best pic of my forehead I could get.

 

 



#3 Joelf

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Posted 28 May 2014 - 11:29 AM

Hi Athora80,

 

Welcome to these forums!

 

I'm sorry to hear that you're concerned about possibly suffering with En Coup De Sabre and I've included a link to our medical page to give you some more information.

 

Unfortunately, having no actual medical training, I'm unable to advise you. It's possible that when you have your doctor's appointment, he will refer you to a dermatologist, as it is important to obtain good medical advice for any type of Scleroderma. However, I would advise against googling worrying symptoms until you've seen your doctor  (been there...done that! ;) ) as you could be worrying yourself unnecessarily.

 

I've included another link to a previous thread on En Coup De Sabre, which I hope you'll find helpful.

 

Kind regards,


Jo Frowde
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#4 Shelley Ensz

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Posted 28 May 2014 - 05:49 PM

Hi Athora,

 

Welcome to Sclero Forums!  I'm sorry that you have concerns about possible en coup de sabre.  I also have no medical training at all, however I must admit that I am rather hard put to think of anything else it might be.

 

While you are waiting, I'd suggest that you take photos of it once a week, under the same conditions. Even if you can't detect a change; this might help tell, eventually, whether it is progressing and if so, how fast.

 

It is usually easier to prevent the progression of localized forms of scleroderma than to treat them after they have gotten a lot worse.  You don't need to go to the emergency room, but also try not to dally around too long waiting for appointments, either.  You could also make an appointment with the doctor only for this, and have your physical as a separate event. Most clinics have very short appointment times nowadays, often 10 to 15 minutes even for physicals, making it very hard to cover even one topic.  You might also want to bring a printout of our en coup page, or even this thread, in the very likely event that your doctor has never encountered such a thing before.

 

Most of us encountered difficulty during the onset of scleroderma in that the initial skin changes can be very subtle. But to the best of my understanding, aging tends to cause horizontal lines on the forehead, not long vertical indentations from the scalp to the eyebrow.  You could also start browsing for scleroderma experts.  Many of them specialize in the systemic varieties so it is necessary to learn the difference between the different types of scleroderma and then browse the various lists.

 

And, should this turn out to be "nothing", as some things do, or something other than en coup, will you please let us know in this thread?  We are always eager to learn more so that we can guide people most appropriately.

 

:emoticons-group-hug:


Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#5 Amanda Thorpe

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Posted 31 May 2014 - 03:08 AM

Hello Athora

I have no medical training either but if that's ageing I'm a monkeys aunt! That said I don't know if it is en coupe de sabre but as already said it's hard to say what else it could be.

If it's scleroderma it needs an appointment all of its own sooner rather than later. Taking weekly photos is such a good idea as is taking in information about en coupe with you to your appointment. Maybe pick a doctor open to suggestions and start with "is this..."

Please let us know how you get on and keep posting.

Take care.
Amanda Thorpe
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#6 miocean

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Posted 31 May 2014 - 05:22 PM

I was going through some old photos of me and found several with a prominent line down my forehead, similar to Athora's photo. These were also when I was in my late 20's/early 30's when I parted my hair down the middle. Oh No! I had en coupe de sabre years ago and didn't know it! GASP!

 

I started looking a pictures of it online and mine wasn't nearly as severe as what I saw. I then searched for "prominent forehead vein" and came up with images that look more like my forehead. With my skin hardening, softening and atrophying it isn't that visible now but I can still see it. I've worn bangs for years so I sort of forgot all about it.

 

Athora, I hope you find an answer to this line on your forehead and whatever it is it eases your mind. My example is to show how easily we can think we have something we do not just by reading the symptoms. I hope you find a good doctor who can help you. Please let us know.

 

miocean

 

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#7 Athora80

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Posted 02 June 2014 - 08:13 AM

Thank you guys, my doc's appointment is in 2 days. I also noticed another indent that I can just feel going horizontal from the ending of my right eye brow into my hairline. I also have a cheek indent that is barely noticable on my right side, my right eye aches sometimes. I didn't think En Coup De Sabre extended down past your eye but Parry Romberg does.

 

What's bad is we relocated to Ohio for a job for my husband, now that job isn't looking too steady and we might be moving back to California in a month or two. So I will have to find a new doctor when we move. I just hope this doctor can help or will know someone who can. Even if it isn't Sclero or Parry Romberg, I have learned so much about two diseases I knew nothing about before, awareness is a good thing. And if it is, it looks like there is great support groups out there. Thank goodness for technology and social media! I will keep you guys posted and I do have a question...we were going to try for another child after the move. Does Linear Sclero cause issues with pregnancy?



#8 Joelf

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Posted 02 June 2014 - 11:50 PM

Hi Athora,

 

We do have a medical page on Pregnancy and Scleroderma; however, this does relate to systemic Scleroderma and not the localised forms such as Linear and Morphea. I've also included a link to some of our Personal Stories: Pregnancy and Scleroderma, which I hope you'll find interesting and helpful.

 

I've also included a link to our page on ISN: Scleroderma Experts to help you to find a Scleroderma specialist should you move back to California.

 

Please do let us know how you get on with your doctor's appointment.

 

Kind regards,


Jo Frowde
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#9 Shelley Ensz

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Posted 10 June 2014 - 07:51 AM

Athora, I am thinking about you. Have you seen the doctor yet?

 

:emoticons-group-hug:


Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#10 Athora80

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Posted 12 June 2014 - 04:35 AM

So sorry I didn't update sooner, I can to reschedule my doctors appointment but it is today at 2. So I will update tonight on what he says :)



#11 Athora80

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Posted 14 June 2014 - 03:24 PM

So I saw my doctor Thursday, he didn't seemed concerned over the indent line on my forehead. He says we have a sinus there and he thinks it is just where my vein is. But he couldn't tell me why it was indented and didn't think it seemed weird that my right side cheek has some fat loss. He said the indent on forehead is normal and has seen it before, if it was Scleroderma it would be hardened skin which mine is not. Do I need a second opinion?



#12 Joelf

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Posted 15 June 2014 - 05:16 AM

Hi Athora,

 

Unfortunately, it is difficult for doctors to diagnose linear Scleroderma, as so few ever encounter it. As you're obviously still concerned about it, it might be worth obtaining a referral to a Scleroderma expert, who specialises in localised Scleroderma, where further tests could be done. As Amanda and Shelley have said, Scleroderma is better treated sooner than later and hopefully if it is En Coup De Sabre, it can be treated appropriately, or if not, at least it would set your mind at ease.

 

Kind regards,


Jo Frowde
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ISN Sclero Forums Manager
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ISN Chat Host
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#13 Amanda Thorpe

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Posted 24 June 2014 - 03:38 AM

Hello Athora

 

I was told by one doctor that the tight skin on my shins was leaking veins, actually it was systemic sclerosis.

 

Here's the thing, this is happening to you and if your doctor is wrong he's not the one experiencing the consequences you are. It would be a good idea to ask to be referred to a scleroderma expert because even if they say it's not en coupe at least you will know for sure. Scleroderma is so complex and most doctors have not seen it so bearing that in mind how can they competently say it's not scleroderma? Does the doctor in question even know what it looks like? How many patients have they seen with en coupe?

 

Take care.


Amanda Thorpe
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#14 miocean

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Posted 24 June 2014 - 06:22 PM

Althora,

Please see if there is a scleroderma specialist in your area and even if you have to travel a distance for a visit, please go. Scleroderma is difficult to diagnosis. I went to so many doctors trying to find out what was wrong with me that it was a relief to finally get a diagnosis. I wish I had gotten it sooner as the disease had progressed rapidly within 6 months.

 

If you are still concerned about it, set your mind at rest by seeing a specialist. 

 

Keep us posted.

 

miocean


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