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Continuation of 2003/4 skin over scalp hair issue

I have developed the same skin condition that was discussed by Beegirl and Carla in 2003/4.  I am seriously hoping that there have been some excellent developments since then.  The doctors response was basically that we would have to live with it.  That is not an option for me.   After dealing with tufts of hair growth and skin adhesions (folds that could be pulled apart to ezpose hair..long hairs in my case)  that were growing normally through normal scalp skin underneath, I finally figured out what was happening.   I have a bump at the base of my hairline (I suppose a hair folicle) which has grown a netlike (fascial tissue) structure on the back of my head over the long hair.  It contracts and pulls the hairline up (right side only in my case) and is soft and plyable but very strong.   I have uses a razorblade to gently cut the cross fibers and suddenly it will contract leaving a corrugated area of hair which is trapped under the longitudinal fibers.  When I gently cut the longitudnial fibers, the hair is fully released.  Now the skin over the net is not very sensitive, and if I am very carful not to reach the true scalp with the blade, it works well.   HOWEVER, this morning I have exposed net tissue with obvious long hair underneath, but the net is now drying in the air and shrinking, pulling the hair and scalp which is very painful.  I soften it with salt water, but I can't seem to get it to release.  I can't use the razor blade because it is too sensitive and too easy to hit the real scalp, which also hurts a lot because of the many times I slightly nicked it.   I have an appointment in the morning with the family doctor and will make a dermatological appointment if referred.   I WILL have this removed surgically, but someone needs to put this codition on the books and name it, as it is nowhere out there that I can find other than here with this forum.  PLEASE Beegirl and Carla...... let me know your outcomes.   I was worried that is was malignant, but now I believe it is just connective tissue (fascia) gone wild due to our irritating ("picking") at it.  Or maybe it is just a fluke thing that started and we responded by picking at it.  In anycase.  I will have it removed surgically.  I have worked too many hours on this neck doing self-surgery with good success until now to stop at a couple of dermatologists.  Believe me.  This is not something you just live with.  It continues until we excise it.   It has bee nearly 5 years.......what has the Medical community or Beegirl or Carla learned at this point?          


This discussion is related to Overgrowth of skin resulting in hair loss.
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Avatar universal
I have the same thing going on for the past few years. I also had a head injury at age 19 (seems to be a common thing with this) I have hair growing underneath my lips and in and out of my skin in a cross stitch pattern. It’s taking it’s toll on my head and body. I regularly get dizzy and lightheaded, have brain fog, and problems remembering things. I have had seizures now that started after this but it’s related I know. My beard and facial hair will grow in (or come out of) my skin randomly. More than one person has seen it happen. Dermatologist won’t listen or do a full body exam. I had a spot on my genitals they did a biopsy and came back with inflammation and infiltrate but was nonspecific or inconclusive. The hair is looping under my skin and it’s both head and body hair affected. I get the waxy scalp build up and nodules as well and just recently , I have the driest skin possible on both sides of my nostrils even moisturizing lotions of good quality only work for up to a half hour and then it’s flaky again. I’m mixed with black and white so my skin is tan but the hairline and on my feet have become hypopigmented and my ankles swell up so big they’re the size of softballs. I do have a connective tissue disorder (hEDS) and think it plays into whatever is wrong too. Has anyone received a diagnosis?
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It’s almost like my skin is turning inside out
Avatar universal
Hi, I became aware of this issue after pregnancy and nursing. I am basically dealing with new hair growth that is getting stuck under the scalp so am left with very deep and painful ingrown hair. I have been told it is due to hormomes and it has left me in so much agony, I feel like no one truly understands. I have visited 4 different derms but since you can't visually see anything on the scalp, they think nothing is wrong. I recently visited a "Japanese Headspa" in LA and received an exfoliation treatment. It has really helped loosen up the hair but I know I still have a long way to go. I am hopeful that after a few treatments, the hair will all come out and heal. I hope this is not something I will have to deal with forever!  Hope this info can help someone.
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Has anyone figured this out yet?  I’d write my experience but it’d be a lot of what has been said.  Started in January where skin was healing from a deep wound. Is there somewhere people are communicating?  I would really like to know what others have tried so I don’t waste time.  I saw something about vellous hair cysts and one person had had every treatment you can think of but found urea to be the answer.  I happen to have Kamea 20 and started using it last week.  I was super optimistic because I immediately noticed the white hairs loosening.  But now it seems the same and my hair looks thinner and frizzy.  I had really thick curly hair and can’t even cover the  scalp anymore.  Please please let me know if there is an answer.  
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I would like to add to a previous comment that apple cider vinegar is good to loosen the mounds of hair cemented to the scalp. I pour a small amount into a custard size bowl and use a cotton ball to apply where I am working with a flea comb to help loosen the hair.  I truly hope no one has as bad a case as I do. Mine was silent for over 60 years so there has been a lot to deal with in trying to control this. There is no cure for it, just keeping it under control. Sixty years of not knowing about it and giving any attention to controlling it has played havoc with my life now.
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I was in a supremely stressful situation when this got super bad! After a month of leaving the situation I started to improve. However there are CONSTANT signs that it is still present! How are you doing? What did surgery find?
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My story is too long. I believe my scalp problem silently began at age 4 after a chicken flew upon my head and clawed me.  I am 73 now and have been living with this condition since being made aware  of it eleven years ago, when I had to start on a survival mission.  I went to doctors who didn't know anything, searched the internet and tried everything until God made me aware of Nizoral 1% shampoo about 7 months ago.
Since that time, using this shampoo and a flea comb for many, many, hours a day, I feel that I have almost conquered this condition. About 3 yrs ago, I saw a dermatologist, who did get a biopsy report of my scalp which confirmed what I had thought it was; overproduction of keratin caused by the chicken scratch I received.  My hair has always remained thick. I know this is hard to understand, but just hope what I have found that helped me, may help someone else.  As a matter of fact, I became acquainted with Nizoral on this site.  It basically softened the buildup of spiraling hair entwined to my head each time I shampooed so that I could loosen the rows and rows of hair with  the flea comb. Good luck!
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Thank you for sharing your experience to help others with this!  
Avatar universal
I too have had this same condition for about 3 years and have been coined crazy. I even went on anti psychotic medication b cause I just believed the drs. Now with a shitzophrenia diagnosis on my file nobody will do any tests have been to 2 dermatologist appointments with not so much as a close look and offered more mental health meds. I have natural wavy hair and I too developed this around  the same time as a brain injury which add more weight to it being in my head I've lost so much hair that I'm now sporting a very creepy looking comb over a lot of different things keep it sort of at bay but nothing works to get rid of it best I have used is a shampoo that is designed for Fingal and bonspecific dermatitis in cats. My guess at the moment is it's malezia or due to my having been a florist for 5 years rose handlers disease sporotrichiosis. Which is also common in people who handle timber or hay and a common source if reinfection is cat scratches. Treatment I am about to try although have not yet fully researched suggested daily dosage is saturated iodide however anyone thinking of trying this should speak to their dr first as I believe the theriputic dose lies very near a toxic dose and may have adverse effects if there are other health issues present.. topically I have good results with antiseptic washes. One miracle cream that worked for me every time is a burn cream that rubs off the burn cream peels and takes whatever it is with it though I can never remember the name, I have a feeling that they hav changed the formula because the few times of late that I thought I bought the right product it didn't roll off like it used to but may have been the wrong one. Will keep u updated on saturated iodide
All the best folks... we'll get there
H
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Anyone come up with a name for this or anyone get help with it? I also suffer from this for 20 years. Doctors cant see it and suggest I see a psycholigist. Its very real. Mine may have started when I was on interferon  21 years ago. My hair was only suppose to thin out but I was only one doctors knew of that lost my whole head of hair.. they were baffled. Hair grows  back but now I have like a thick tough layer of skin on scalp and body  that traps hsir underneath it. Not all but enough to drive me crazy. So I shave my head to this day. And wear wigs. Its so frustrating . I wont see another doc for this becauae Im not crazy its very real. When I do try to grow my hair out it is so itchy and scalp hurts so bad to even brush it.  I think its some sort of yeast infection. Who knows.
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Avatar universal
I have been experiencing the same condition. It set in shortly after a brain injury and presented as a bald patch on my head for no reason after washing it. I had felt my hair wa thinning and it was think so I didn't pay much mind to it. Now I must wear a headband in public or I'm overcome w embarrassment. As a woman hair loss is brutal to self esteem. I feel I once was an attractive woman; now it's all a trick, my headband hides my (as I see it sometimes, maybe this is a bit dramatic) mark of Cain. I'm seeing a Dermatologist soon. Anyone PLEASE: HOW DO I DESCRIBE THIS TO A DOCTOR...AND HAVE THEM NOT DISMISS ME AS CRAZY HAIR PULLING....as has happened maybe 5 times now -Carolyn
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They ALL think I'm nuts - did you get any answers??? I"m so happy to have found this thread. My life has completely fallen apart because of this.
They ALL think I'm nuts - did you get any answers??? I"m so happy to have found this thread. My life has completely fallen apart because of this.
Avatar universal
Suffering the exact same thing...to a tee!   My rationale and observances begin at the scalp as hair grows with a slight curl, interlocking with the next hair.    The real trouble happens when the locks make contact with other locks. Tightening, twisting, spiraling. Multiply that action by 10,000 and my scalp has always been left wifh thick conditioners, always finger combed, its beyond a nightmare.  I have so many observations,  but no doctors want to hear.  This is real and painful.
Lots more to add, but rather awestruck that I've FINALLY found others that understand.

Could someone contact me directly?
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I'm sorry to hear that you have this dreadful scalp disorder. I have been struggling with a full blown case for eleven years now. Eight months ago, I began using Nizoral shampoo. It has helped to loosen the layers of cemented hair around my head and scalp. Shampooing with this, and along with a flea comb, I have made a lot of progress.  It is slow and tedious.

All I can say about doctors is that they should get more education, be more caring and divulge more information of what they do know instead of saying
"It's nothing there" or " It is all in your mind. A more thorough examination
might cause them to give a diagnosis.
Avatar universal
I've got the same condition and I had it 42 years ago when I was a teenager. I think the dermatologist told me that what happens is that your scalp has five layers and you get a wound on your scalp and the scalp grows an additional layer over the wound and your hair continues to grow under that layer.

More than that, there is a fungus involved that has  nematode-trapping loops that wrap the hair under the new layer of scalp into loops and it breads there and produces a web like home around it that sends out trailers to other parts of your scalp.

My condition is so bad that it's all over my body like tiny spider webs. I went to the doctors and they couldn't see anything and thought I was hallucinating and ordered blood and urine tests instead of taking a sample and sending it to the lab so that I could get some oral anti-fungal medication to treat it like the dermatologist way back in 1974 or 75 gave me that cleared this stuff up.

I'm going back to the doctors again today and this time I've got what "looks like" a long hair growing out of my ear with nothing attached to it.

But when I rub the side of my jaw 6 inches away you can see something is pulling this hair when it "looks like" there's nothing there between the 2 areas.


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YOU LITERALLY JUST DESCRIBED WHAT I HAVE!!! omg i'm so happy to see this. my is all over my body too and I know it stems from my scalp and it feels JUST like tiny webs all over my body and its made my face distorted in certain areas. Do you have any further info? A name? It's a miracle that I'm reading this.
Has anyone figured out a name for this? My best friend has it and I am trying to help her. Her Doctors are stumped as to why the hair in her sideburns area keeps growing under her skin where the side burns should be. She has described a net like skin she saw, underneath her facial skin. Her hair is retracted into her facial skin, it is so odd! Her sideburns is just blank now, with hair growing underneath!!
Avatar universal
From Beegirl....still suffering from this misunderstood condition that has no name.  
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Avatar universal
I experienced a similar condition while working in a warehouse with a lot of vinyl coated foam rubber products, i.e. boxing gloves, head protectors, and other sporting goods equipment.  I was also sweating alot and, due to a combination of low pay and old bills, I was living in my camper.  I wasn't getting a full shower every day but rather used sponge baths with alcohol and other methods.  I developed very hard plaque type skin on the back of my neck around the hairline and also numerous cyst-like acne spots on my face.  I've since been showering at a truck stop in lieu of the spit baths and that has helped.  I've also stopped working so furiously because sweating seems to be a significant contributor to the problem.  One type of sweat has bacteria in it and a alcohol rub without running water just isn't good enough to wash away the different things that can build up.  

The spots tend to become infected from picking and/or develop into cyst like sores that must be dug out very deeply to eradicate.  I've pulled several cyst like masses from those sores after spending hours chipping through the outside very hard layer down to the pulpy underneath, with very tiny hairs seemingly growing normally underneath and also large hair trapped underneath and forming a hard plague of web-like scale over my skin.

I've stopped using alcohol which I think worsens it, possibly due to drying.  I'm showering almost daily to keep the area clean and avoid infection.  If you sweat, I would shower as soon as possible following as that seems to be substantially related.  My condition has slowly improved and I'm left mainly with white patches, some of which might be scarring, and/or temporary pigmentation loss due to losing top layer skin.  Still others, I think, consist of a whitish plaque just under the skin, sometimes in creases, that can be scraped out with enough patience.  They are fairly deep but not terribly so.  The closest I've seen to this condition is along the lines of morphea, schleroderma, and vinyl chloride exposure in the workplace.  Not sure that any of those are correct though.  Good luck.
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