Replies to This Discussion

Permalink Reply by Jen on October 1, 2013 at 10:10pm

Hello Madmasoo,

I asked my derm the same question that you are asking and he said that the disease can stay under the skin and attack the transplanted hair. I am also concerned that any type of surgery (even a needle prick) in the affected area could cause the immune system to over react and cause more hair loss.

I have very curly coarse hair and cannot find any hairpieces (curly bangs) that would blend with my natural hair.

Regards,
Jen

Permalink Reply by Mary on October 8, 2013 at 10:41am

I have curly hair too, and there are no hairpieces (no toppers or bangs) that are curly and will blend with my natural hair. What I did was buy straight-hair pieces ("toppers" and also "bangs"--I have a bunch of them, both synthetic and real hair)and I curl them myself. With synthetic hair, I wet the hair, rollthem spiral-syle on small rollers, secure the hair with clips on the rollers. Then, to really set the sythetic hair, I boil water in a small glass bowl in the microwave, allow the water to cool just a little bit, dunk the rolled hair into the hot water for several seconds. Then I allow the hair to dry overnight on a wig head. The next day, after I unroll the hair, it's curly! With real hair, I just set the wet hair on rollers (again, spiraling the hair on the roller), and secure with clips. I don't have to dunk real hair into hot water. The rollers I use are mesh rollers(I took a picture and I've uploaded it) because mesh rollers don't have bristles on them (that can pull the hair out) and I can put long pins through the rollers to secure the rollered hairpiece to a head to dry (I use a styrofoam head). It really works--the hair blends well, and people don't know that my curly bangs aren't mine.

Attachments:

• mesh rollers.pdf, 576 KB

Permalink Reply by Jen on October 8, 2013 at 10:56am

Thanks Mary,
I measured my curls and they are half inch spirals when then are not frizzy. I will try this if I can find rollers that measure up. I am not sure which country you are in but I will check here in Canada for these rollers.

Jen.

Permalink Reply by Sam on October 1, 2013 at 10:51pm

Hi, I'm 41 too btw. I agree that surgery could advance it. I actually noticed much more loss since the biopsy I had done and one of my derms said that surgery is known to make it worse but he didn't think a biopsy would, yet I am watching it happen. So annoying. Do you notice a difference with the doxy?

Permalink Reply by Debs on October 2, 2013 at 6:46am

Surgery would only be possible once the FFA has burnt itself out otherwise you are taking healthy grafts and transplanting them into an area with active FFA.

Permalink Reply by purplemainst on October 21, 2013 at 6:45pm

Has anybody ever gotten to the point where this burns out and can get the grafts?  

Permalink Reply by Madmasoo on October 2, 2013 at 2:18pm

It seems as if I should clarify: this is not hair transplant surgery/grafting, it is actual hairline advancement and from what I have searched on the topic, is generally performed specifically for transgender (male to female) patients. This is due to the fact that men have receding hairlines and when undergoing the change to female, this is problematic. It is also performed on women who have a natural hairline that is further back. Hairline forward/forehead shortened. So, the actual hairline (in our case, the scared section/band that has lost hair, i.e. a couple of inches) is surgically removed and where the hair starts again, is brought forward. It is often performed in conjunction with hair transplant surgery. Apparently you must have a flexible scalp and if one doesn't, they balloon expand the skin to move forward. Does this make sense?

Permalink Reply by Jen on October 2, 2013 at 2:39pm

I understand what you are saying. The scarred scalp is removed and the hairline pulled forward. The problem that I see with this is that scarring disease is sometimes under the skin all the way to the eyebrows and pulling unaffected skin into the affected area exposes the good hair to the problem that killed off the original hairline. Added to that my experience has been that even a needle prick has caused hair loss. If what you are suggesting could be done successfully then I would be first in line.

Permalink Reply by Brenda, IL US on October 3, 2013 at 8:12am

That sounds very interesting. I will ask my derm. Is the doxy helping? My derm hasn't presribed an antibiotic.

Permalink Reply by Madmasoo on October 3, 2013 at 2:47pm

Yea, was just brainstorming on options and decided to do a more in depth search for surgery options. Let me know what you all come up with if you look into it further.

Everything seems to be working that I am taking currently, but the process is so slow and I am recently diagnosed. Maybe some slight increase in loss on the sides of my scalp right above my ears, nothing really in the front. We will see. . .I have a f/u with the dermatologist soon and she took pictures as well.

Take care!

Permalink Reply by Debs on October 5, 2013 at 6:19am

I have read a post about this procedure on the Alopecia UK website, a lady on there had an 'expander' fitted underneath her scalp, it was made bigger every few weeks to stretch the skin so that is could be bought forwards to replace the area of scalp that was bald... it is needless to say a painful procedure, she does not have FFA, this surgery would I am sure be possible for an FFA patient but.... we would need to wait until the FFA burns itself out before proceeding with it. It would also depend on how far back the FFA travels before it burns out. This is an option that some of us could use in the future and definately something for us all to be aware of. The more options we have the more empowevered we can be and find ways to work round this condition. Thanks for raising this. I don't think any of our derms in the UK have mentioned it in relation to FFA although it is avaiable on our national health service for alopecia so it is something we can discuss.

Permalink Reply by Mary on October 8, 2013 at 10:16am

I have frontal fibrosing alopecia (ffa) for over six years now (I'm not sure exactly when it started, but I was diagnosed in 2007, and had hoped to use hair transplant surgery to restore my hairline. My dermatologist(Dr. Jerry Shapiro in NYC, one of two dermatologists I've gone to for treatments and a leading specialist in frontal fibrosing alopecia) told me that if the condition were to go into "remission," perhaps hair transplants could be tried. I contacted Dr. Robert M. Bernstein this past July at his hair transplant center in NYC (Dr. Bernstein is a Clinical Professor of Dermatology at Columbia University in New York and a world renowned hair transplant surgeon) for a consultation at his hair transplant clinic here in New York. He would not do a hair transplant on me because he said the ffa can reappear at any time and destroy the transplanted hair and all the money I would spend on transplants would be for naught. I would be wasting thousands of dollars. So I didn't do any hair transplants. I bet that I could find a hair transplant clinic that would agree to try a transplant, but for now, I'm heeding Dr. Bernstein's advice. Is there anyone out there with ffa who has had successful hair transplants?? (P.S. I still have my eyebrows, which Dr. Shapiro said is highly unusual, although they are less thick than they used to be. But THEY'RE THERE--and for that I'm wildly grateful.)

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