I’m in the UK and I was diagnosed with lhermite duclos also and the Cowdenbeath syndrome after that. I was diagnosed 2 and a half years. It’s nice to see that I’m not alone.
Hi Kaitlyn. Thank you for posting your story. I have been diagnosed with the same condition that you had. My surgery is scheduled for Nov 2016. Will keep you posted.
Hi Debra Fredette i hope your doing well now, Please turn to Jesus He loves you and can heal you from any illness, He is the God of miracles, God bless you
Thanks Claire Bullimore, I'm all good with post-opp. Plus my surgery was back in 2015 when I was 24. I'm sorry that you can relate to my story/experiences. Subscribe to my channel and check out my other videos. I just had a double mastectomy because I had early stages of breast cancer, I made a vlog/video about my day of surgery. I also have a blog called Kaitlyn's Life, link can be found in the description box of this video.
Damn I am so sad you got it in the breast. Damn... Just makes me remember how it's never really cured...I really want it to be cured...look at the ingredients for food and drink. If the ingredients are past five words, don't buy that shit. Stay away from candy and soda too:( I hope you beat this sucker completely!
You are truly inspirational, your story moved me. You have been through so much. I hope you are still keeping well and still doing good nearly a year on from this video.
Thank you Carly Saville, you are so incredibly kind and I loved reading your message. Overall I'm doing fantastic with my health. There definitely has been some very challenging times, for example I was diagnosed with early-stage of breast cancer last year. I finally decided to have a double mastectomy this past April and my reconstruction surgery is in August. If you're interested I also have a surgery day video for my double mastectomy. I made this Brain tumor video and along with my other medical videos because I wanted to share my story and positive experience that I view with these hardships and medical challenges I will have for the rest of my life. Lastly, I have a personal blog called Kaitlyn's Life. I believe I linked my blog in the description box.
Sorry you have to go through such a difficult time in your life!! Your so young with a big future ahead of you. I will keep you in my prayers and hope everything gets better for you❤️🙏🙏🙏🙏🙏
Hi Kaitlyn, First of all my prayers go out to you and your family. secondly they will be answered because of what a special young girl you are. You are certainly an Inspiration to all of us. Stay strong and persevere, good luck with your chosen career and many happy decades throughout the rest of your long life!!
I know how bad those headaches can be. I also had major headaches caused by my brain tumor blocking my 3rd and 4th ventricle. Those headaches could be excruciatingly painful and painkillers wouldn't do anything for me. That may have been the worst pain I've ever experienced. Anyways, thanks so much for sharing your story, I hope you continue to improve and get better.
Thanks, Rob and also thank you for subscribing to my channel. I was lucky that the painkillers helped, a few others people that I talked to they said the same thing as you did. What type of tumor did you have?
I have craniopharyngioma. It's a tumor that grows on the stalk of the pituitary gland. Mine developed a cyst on it which basically meant a fluid filled balloon grew out of the tumor and caused all of my pain. Thankfully, post surgery, that's all behind me (at least for the time being).
Hi kaitlyn, you are really after i was diagnosed ldd and later cowden. Your videos are really informative for the scariest days in my life, and because of your videos I know more things about it. Almost done, with the hospital. You are my hero in these days!
an3ble Thank you, your so kind, I’m very glad that my videos were able to help you. I definitely relate and I also have been in those dark places/sad moments when you are facing so much medical things/plus added in it being rare doesn’t help either. I’m very glad that my videos internal could help you. When I was first diagnosed with a brain tumor I went on here to see if I can find any other stories, there is nothing. So I decided to share my story in hopes of connecting with others with the same brain tumor or anyone that can relate. I also have a blog at Kaitlynlife101 - I believe a link to the blog is in the description of this video.
Thank you for your comment back, I am now recovering from my ldd surgery. And over two days they are looking if my thyroid is clean of tumors. This indeed new for my, I will keep looking at your videos and your blog for energy! :-)
my doctor said that I was on good progess, and he was very happy. my thryiod is clean. but it looks thick and with noduls like a thryiod from someone with cowden. I think, I will wait next year scan. and if something changes, i wanted the thryiod out.
Hi Kaitlyn.You are inspiration to many people my son had a brain tumor in 2009 removed then 2015 removed again he has went threw chemotherapy.as a momma our children our our life's we love them with all our hearts keep the fight up my son has too 😀
Thanks D. c for your kindness, I also have a blog at kaitlynlife101.wordpress.com It would be so great if your can check out my blog, share with your friends and family and follow. I truly believe I was put on this earth to tell my story and by sharing my story, along with a positive attitude. I can help others.
Prayers for you and your family Kaitlyn. I am not a crying type person, but I definitely did during the part of the video when you said your mom drove to that new hospital to be with you. It is really awesome to have loving parents. Thank you for posting your story.
will do Kaitlyn, thank you...was meaning to ask you if you are a cubs fan? my wife and I went to the world series..game 4 at wrigley! It was really amazing. We love Chicago too. And that is cool you like to draw..,,our daughters love to draw too.
Andrew Safie oh yes, I'm defiantly a Cubs fans. That so cool you got to go to one of he World Series games. Yes, I do love to draw and also paint as well.
Hi there Kaitlyn, My name is Nichole, and my 4 year old little girl Malia was also diagnosed with Lhermitte Duclose about a year and a half ago now when she was only 3. She did go into surgery last March for a resection attempt, but unfortunately was not able to remove any part of her mass. She also got hydrocephalus and had to have a perminate shut placed. We are told that she will never beable to have any part of this tumor removed, so if or when her tumor grows we dont know what to do, or what is going to happen. No doctors really know much about these brain tumors, and It gets so frustrating at times, so I try and find other options and second, third, fourth opinions.. I think I know more then these doctors at times, just becasue I have spent countless hours studying up on my own, and passing the info that I find to her doctors to keep things going. I am so glad that you are doing well, and just know that you are not alone! I would really like to get in contact with you if you wouldn't mind, but I will leave that up to you :) you can find us on facebook ( Nichole N Kimo Garcia ) or my email: nichole.castro@rocketmail.com Best wishes and many prayers, Nichole
Hi Nichole, I'm very sorry to hear about your daughter's diagnoses/story. Thank you so much for leaving a comment and sharing. I know my mom and I can definitely relate to experiencing many doctors that have never heard of this tumor before and yes it is definitely very frustrating when you know more then they do. That's very interesting that they informed you that none of the tumor can be removed. I know mine could be but there is another lady she had a second tumor in between the two halts of her cerebellum. Her second tumor is apparently under healthy (brain) so it can't be removed. I connected with her through her blog, she also has the same brain as your daughter. Coming from a daughter's point of view, you are doing an amazing job so far and yes it's very frustrating and concerning about all of the medical care, future and finding answers. Not sure where you live but keep doing that research for a team/doctors and leaning as much as you can about this tumor. My mom and I were in the same boat a year after I graduated college and moved back home to Chicago. I'm hear for you, if you just want to talk or have any question for me. Please check out and follow my blog. Link is provided in the description box/more information in my video.
I had one question for you, how did you discover/find out that she had a brain tumor. Was your daughter experiencing headaches? Just was curious because I have only connected through social media to other people with this rare brain tumor and they are bother in their 40/50's. This type of tumor primarily appears in young adults so I was just curious on how you discovered the tumor.
Thank you Kaitlyn! I will definitely follow your blog :) We live in Spokane Washington, and we found out because she was having headaches, double vision, and losing her eyesight, so while getting her eyes checked they found that the stems from her eyes to her brain brain were disfigured meaning that something was not right. So that is how we got the MRI that found the tumor. Since her surgery she has had more complications with her words and balance, and still has headaches often. I too, have found a couple others with LDD as well, and also in thier 40/50's. When she was diagnosed I was told by John Hopkins that it is found more in people in thier 3rd stage of life? When Malia had her removal attempt her neurosurgeon told us that her tumor is embeded and intertwined in live brain cells that makes it impossible to remove. I guess that out of the small number of patients ever diagnosed she is one of a few that cannot have it even partially removed? We are now in the Genetics process of testing her for Cowdens Syndrome, Im sure you have been through as well, and she may be getting refferd to the Cleavland Clinic (Which is far away from here) so I guess we will see. :) Thank you so much for the reply, and look foward to chatting with you some more
+Nichole Castro +Nichole Castro Wow that's very interesting. I am very fascinated with the medical world and I wanted to learn more on how you discover the brain tumor. Amazing her tumor is intertwined with other brain cells. Genetic testing is great, I just got mine down one July 14,2016 and found out that I have a positive PTEN gene mutation or also known as Cowden syndrome. I defiantly here for you and your daughter and please keep me updated. I know you mentioned your daughter is having balance problems. Does she like to dance or any type of that kind of movement??? Just thought it might help because I have been dancing for age 3 and when I tell people about having a brain tumor on my cerbellum. They think it's so amazing because I have particularly good balance. I truly do believe the long/years of dance helped.
+Kaitlyn Keely yes small parts of it are, and parts of the tumor itself are active. So from my understanding she and only 5 others ever with LDD have had this problem. And also, it is beginning to wrap around her brain stem.. We are told that she had to of been born with it due to the size and her only 3 when diagnosed. I actually was about to put her dance! that is a fantastic idea.. her balance is not too bad, but definitely noticeable during some activities. anything that will help and most if all make her happy :) but all in all, she is doing amazing right now! It is so nice to be able to talk to someone that relates, wish it was different circumstances, but we too are here if you have any questions and for support
Hi kaitlyn, I too have the pten gene, I was diagnosed 3 years ago, along with my son, my brother, my dad, my nephews. We live in the UK, the only treatment we have is checks on our thyroids, and my brother had a endoscopy. I have no further tests, I just have to be vigilant with our health, my son is 8 years old, and autistic so I worry about his future health, plus he has a fear of hospitals. I do suffer with alot of headaches but I put that down too my contraception which I think causes hormonal headaches, I am currently getting this changed. Your story do scare me but I am also so pleased you found out the cause and are in good health, thanks for sharing your stories xxx
THANKS Louise Brown for your connection and families story, Along with your kind words. Yes, I was very fortunate that I had a ER doctor back during my junior year of college that really listened to my symptoms and therefore brought me to have a CT scan. My mom doesn’t have the a PTEN gene issues but I know she can relate with being scared for her child. At least your son has many family members that can go through this very hard journey with him. I’m the only one in my family, that we know of. Well, I’m here if you ever want to talk and please check on my other videos on my channel and subscribe. I also have a blog where I write about my life journey, check that out. Link should be in the description box or you can search Kaitlyn Life 101.
Kaitlyn Keely I have already subscribed, 😁 and I have watched your breast story, thyroid story and epilepsy story 😁 are you in the pten group on Facebook, with Emmi Dack? I often feel so alone with having the pten, most doctors have no clue with what I am talking about, you are the only channel that I can find where the patient is talking about their experiences, the rest is all medical jargon that I struggle to understand, I forgot to mention that I have quite a few scans on my womb just to double check, and I have had a good check up on my eyes when I told him I had the pten, as well as the dentist who looked throughly at my teeth and mouth x
Louise Brown Wow - Thank you for watching and subscribe to my channel. That’s why I wanted to share my story because when I was diagnosed last year, I went on you-tube to see if there was any stories - nothing. Yes, I’m a part of that Facebook page. It’s definitely great to have a group to talk and relate to. Definitely been there with doctors having a hard time understanding. My mom and I worked very hard to find the right hospital, with the right team of doctors. Even though I was their first patient, they learned and embraced someone with a complicated medical history and future. If they don’t know, then they learn as much as they can.
you are so sweet & very kind .you are the one who shines.if you would ever just like to text our talk it would be extremely nice .see as a momma myself it's actually our kids who we look up too 😀
Thanks Bobbi Reid, I did have symptoms and that's what brought me to the ER during my junior year and then when I graduate college and went for my check up my symptoms were changing,walking was funny. That's were we found out the tumor grew. My tumor may seem large, it was but I also wanted to say my tumor is a part of my brain. When they went in to take the tumor out they also had to take health parts because everything was tangled together. Thanks for watching my brain tumor video. 😀😀😀😀
please help me plese talk to me , im scared i got brain tumer surgry and 4 timr doctore chang medecine , i still taking seasure medecine i can get hop if u talk to me u can give me some good advise
Thank you, I do feel better but even though it's been 3 years since my brain surgery. Things definitely have been rough with my overall health. You are very kind when you have a chance. Check out my other medical videos on my channel.
Hi there :) I was diagnosed with LDD when I was like 7, they haven't done much about it, but as I've gotten older I feel like my symptoms have gotten worse and the though of me going off to college and this potentially doing worse scares me to death, would you mind emailing me with any doctors or anything that you worked with that might be able to know anything about this first hand and be able to help?
Kaitlyn Keely we have, once I year I go to get an mri, it hasn’t grown much but I’m still really young and it’s mostly seen in older groups in their 30/40 so who knows when it’ll start really really causing issues
True, I head the same thing from the original doctor that diagnosed back in college. LDD tumor is slow growing and very rare. You can contact/e-mail me through my blog at Kaitlynlife101
53mandevilla Left side of my cerebellum (just 1 brain tumor), nothing to do with my life style or food. I was born with a rare gentic medical condition. If you have more question about my diagnoses of a brain tumor, you can research Lhermitte-Duclos disease. Image: Left image, while look at the picture it’s that large mass on the right half of the cerebellum. facebook.com/photo.php?fbid=10153778548669878&set=a.436001954877.227051.736489877&type=3
I know it's a year later, but I did want to mention that social media is very prominent now, more people can openly/publicly speak about medical conditions. Also, years ago brain tumors were much more lethal, so people were dying rather than posting on social media, if it existed then lol. Rare conditions have always been around, media availability not so much
GOD change every thing all in your life .the only thing you just doing strong believe and praying that's all . You are so cute and smart thank you for sharing .I will pray too🙏🙏🙏
My doctors suspect I have Cowden's Syndrome now. Like you, I have a large head circumference, I had thyroid cancer, triple negative breast cancer and now Paget''s disease of the breast. I was told about 2 years ago I had a lymphoma in in my brain, noting to worry about. I have thought about it a lot. I have been a very sick person for 11 years. I'm old enough to be your mom so I have to say, I admire how brave you are. I admire how open you are and how determined you are to do what you need to do. I've seen some of your other videos so I know you've gone through things no young person should ever go through. It's hard enough for me and I'm in my 50's. God bless you. I pray for you that you will not continue to get cancers and tumors. I pray that you will have a normal life and continue to share your story for those of us who feel like no one could possibly understand how we feel.
Hi am kind of confused i always have a headache, i went for check up the doc said is just a migraine. i now have this sharp pain like someone is putting a needle in my head, it last for secs
Aliyu Mai Umar sorry you are dealing with headaches as well. What are you confused about? Defiantly can be a pain communicating with doctors and trying to figure out what's wrong. If you still dealing with pain and headaches, my best advise would be to go see a specialist.
To everyone reading this please turn to Jesus He loves you and wants to save you from the pain you are going through, Only Jesus can truly heal you, He is the God of miracles, the bible tells us in Romans 10:13 For whosoever shall call upon the name of the Lord shall be saved, I seen God do amazing things in my life and in the lifes of people I know, God saved someone I love from illness leading to death, There is nothing impossible to God, Its as simple as asking Him to show you He is there and if you really want to know Jesus will answer you, I know this because it happened to me when I called out to God
Only God can Help us to overcome .we should have faith in God.He can do everything With the Stripes of Jesus.I also had brain Tumor,but Jesus Help me to get cured by Chemo therapy.please pray for me.Thank You
