Plexis or Fibromas on scalp

Moderator: Vandaar

Plexis or Fibromas on scalp

Postby jules mom » Fri Nov 07, 2008 8:30 pm

Ok I noticed Jullian had one.Now tonight when I felt his head all at the back it almost feels like he has 4 or 5?I am curious what I should do?We have an MRI in Dec.Will they show?
Kathy Proud MOM to Jullian (19 NF1, Autism. Noah 15 smart a$$, Alexus 13 the DIVA and DAWSON 11 hockey dude.ALL the way in CANADA!! HATING THE LACK OF NF CARE HERE!!!!!!
jules mom
 
Posts: 2033
Joined: Mon Apr 09, 2001 9:01 pm
Location: toronto

Re: Plexis or Fibromas on scalp

Postby jules mom » Mon Nov 10, 2008 8:51 pm

ANYONE???
Kathy Proud MOM to Jullian (19 NF1, Autism. Noah 15 smart a$$, Alexus 13 the DIVA and DAWSON 11 hockey dude.ALL the way in CANADA!! HATING THE LACK OF NF CARE HERE!!!!!!
jules mom
 
Posts: 2033
Joined: Mon Apr 09, 2001 9:01 pm
Location: toronto

Re: Plexis or Fibromas on scalp

Postby Shawna » Mon Nov 10, 2008 9:42 pm

I feel for ya...I have searched for answers too and just dont have them. So sorry. My daughter has a couple pea sized bumps on her head, more around the area behind the ear, but still on the scalp. Months ago her ped said that one (she only had one at the time) was a swollen gland. I'm going to ask her oncologist about them when we see him on Thursday. We have our 3 month MRI on Dec 8th, I'll ask the dr about them showing up on the MRI as well. Will post if I get any good answers from him.
I'm curious what the difference between, lump, bumps, plexis and Fibromas are...I feel confused too.
-Shawna (mom to Mia, 2 yrs old, NF1, Optic Glioma on both optic nerves, starting Chemo on 9/15/08, lots of CAL's.) www.caringbridge.org/visit/miarashkind
"Ya gotta have rain to see the rainbow"
Shawna
 
Posts: 130
Joined: Mon Jul 21, 2008 3:40 pm

Re: Plexis or Fibromas on scalp

Postby Brenda2 » Tue Nov 11, 2008 11:20 am

This will probably not be of any help, but here has been our experience. At age 5 Jay had pea sized bumps & some a little larger grouped together behind his left ear. They were very tender to touch and maybe even slightly spongy. Our doctor for the next 4 years, said they were swollen lymph glands. Over the next 8 years(Jay is now 13) the bumps changed into longer ridges, not so much round anymore. But the main thing that alerted me to this being a possible plexi was that his hair started growing dark & VERY thick in that area of his scalp(around age 9). Then we started to get grey hair in that area along with thickening skin (around age 11) to the point that now I can hardly feel the bumps/ridges at all; his scalp just feels thick & rubbery. Also lately I have noticed an odor from his scalp that does not go away even after he washes his hair. I think it has to do with his hair folicles being damaged but that is just my guess. A couple of weeks ago a new doctor did confirm that he has a plexi on his scalp. My advice would be to just watch the area for changes. Jay really hasn't had any problem with his plexi; hair cuts are not so fun & we try to find ways of cutting his hair that hide the larger left side. Otherwise, we have learned to just continue living because sometimes there just aren't any answers or once you do get an answer, you find out nothing really changed anyway. One thing I have learned is that your intuition about your child is extremely important. I would have never found this doctor if I hadn't pushed & persisted even when other doctors treated me like I was stupid. Good luck - I hope this might answer some of your questions.
Brenda
Brenda2
 
Posts: 22
Joined: Mon Jul 30, 2007 9:01 pm

Re: Plexis or Fibromas on scalp

Postby Vera Ellis » Tue Nov 11, 2008 11:57 pm

Torr has one on the left side of his head but it is kind of hard as oppossed to very spongy. Dr. Korf told us last year that it is just a fibroma, similar to the ones just on the skins which look like bumps. He says the only problem it would present is that it might hurt a bit when Torr's hair gets brushed. I have also noticed a couple on my scalp, which I thought were pimples but they have been there for a while and Dr. Korf's was right, they kind hurt of I am not careful whe I brush my hair. Of course this is just our own experience so I am not so sure if it applies to you.
Vera

Mom to Victor (age 7) NF- orbital plexiform behind right eye with surgery at age 5 to partially debulk tumor, ODD, ADHD, sensory integration dysfunction, underdeveloped core, tic syndrome, Aspeger's Syndrome; Daniel (2 years) an extremely energetic handful! Wife to Gregory, loving father and gifted composer

Image
Vera Ellis
 
Posts: 866
Joined: Tue May 15, 2007 9:01 pm
Location: Huntsville, Alabama

Re: Plexis or Fibromas on scalp

Postby Guest » Fri Nov 28, 2008 10:38 pm

I think I just erased my message...I just got workable internet, I keep botching posts now!

My husband has a few fibromas on his scalp, they're really only an issue at haircut time...Genna has one tiny one that MRI sometimes picks up, but really it hasn't been an issue. So maybe that's encouraging?

peace,Kristin, Genna & Rosie's mom
Guest
 


Return to NF and Children

Who is online

Users browsing this forum: No registered users and 1 guest