Hi Everybody

HI MY NAME IS TINA.I'M 32 YRS. OLD.I FIRST FOUND OUT I HAD A BRAIN TUMOR WAS 1 MONTH AFTER MY 20TH BIRTHDAY.I HAD REALLY BAD HEADACHES.

I KEPT GOING 2 THE DRS.THEY SAID I HAD A PULLED MUCSLE IN MY NECK.THEN MY EYES WENT CROSE.FINALLY FOUND THE RITE DR.WHO DID MY FIRST  3 BRAIN SURGERIES.

THE DRS.TOLD ME I HAD VERY RARE BRAIN TUMOR.LHERMITTE-DUCLOS SYNDROME

THEN I HAD 2 GO 2 ANOTHER DR.BECAUSE MY HEALTH GOT WORSE.AT FIRST I WAS REALLY UPSET,BUT MY NEW DR. IS GREAT.

ALL 2GETHER I HAVE HAD 5 BRAIN SURGERIES,AND1 ON MY NECK.(HAD A FATTY TUMOR)

MY LAST SURGERY WAS OCT.29 2009.

I WENT 4 A CHECK UP THE OTHER DAY.DOING GOOD.NO SIGN OF TUMOR,AND NO PRESSURE ON MY BRAIN STEM.

tinaarlene tinaarlene
31-35, F
4 Responses Feb 20, 2009

hi everyone, im so glad i have finally come upon people who have this extremely rare disease. My name is Amanda, and my son Kyron who is 5yrs old was diagnosed 3 years ago, during this time ive felt very alone in this and ive been trying to find people with this, i have so many questions and the hospital feed me jargon words which i havent a clus as to what they mean. obviously as a parent i worry about my son and what effects this disease will have on him as he gets older etc. his last mri scan was march 2013 and luckily there has been no change in his scans since when we first found out he had lhermitte duclos, so now they are scanning him yearly instead of every 6 months. if anyone who has this could please write back just to talk about this id appreciate it soo much.

HI--My name is Karen and I also have Lhermitte Duclose Disease and Cowden Syndrome. I had my first surgery about 20 years ago and then had to have a second surgery to put in a shunt for hydrocephalus. I see a neurosurgeon regularly and he tells me that the tumor is growing back and that I will need another surgery. It could be tomorrow and then it could be several years--just looking for more severe symptoms. There is a group on facebook called "LDD friends" if either of you would like to join. Karen

Hi Karen i know you made this post a few years ago but ive only just found this website, ive tried looking on facebook for the group but had no luck in finding it x

Hi<br />
my brother has just been told he has this may I ask you some questions about this as info is not very clear on the net<br />
kind regards<br />
Joanne

That's great