This is our amazing daughters view on her condition. Video Rating: five / 5
20
comments:
pris72
said...
Hi sweetie. I was just diagnosed with pseudotumor cerebri last week, and I am just starting my journey with the tests and seeing various specialists. You are a very brave young lady. Stay strong, even though some days that may seem impossible.
Are you on Facebook? There is a group on there called Intracranial Hypertension Awareness. It's a great group that would be good for your folks. Hope to see you on there if you're not already there!
You are quite a smart young lady! I can't say I know what you are going thru since each one of us with this horrible disease suffers a little bit differently and I can't imagine what it must be like for you to be going thru this at your age. I am a Mom and have 2 little boys age 6 1/2 and 2 and I know how hard it is for me to take care of myself and to not only take care of them but to play with them too when I have constant headaches, etc. Good luck Sweetheart!
My heart goes out to you because I was diagnosed with psuedotumor cerebri and the I've been dealing with the same thing and hope that there is some day a cure I just found a research center in New York for our condition it's called the Mayo Clinic and I hopefully will find some help here so I'm in your same boat living with the problem and wishing that it would get better sometimes on top of the shunt I have to have a spinal tap.
You are a very strong little girl! I too know what you are going through, I've had Pseudotumor Cerebri for 2 years I was very scared and you are so young and so strong..Hang in there sweetie!
Oh sweet Kylie ... you are not alone so many of us know and understand your pain.. i wish you all the very best and i know there will be a cure one day soon .. xoxo
Kylie, You are a very strong little lady. My wife was diagnosed years after seeking treatment for unexplained headaches. I can only imagine the experience and feel for those who suffer from ICH everyday.
Kylie's Folks, I'm no doc but my wife only takes Diamox. Not sure of the whole story behind 17 pills but the diamox is the only thing she takes for the ICH. It is a diaretic (SP?) that reduces the amount of fluid she produces. It has helped but she still has some head aches. Hope that Helps
it's nice to know that I am not alone in this fight with PTC. I was diagnosed in 2007, right after I had my little girl. The constant migranes that kept me up all night for a whole year was horrible, I had a hard time taking care of my lil girl. finally I went to the Dr. for some help and my eye dr was the one who diagnosed me. I know exactly what your going through, and keep your chin up. I've lost my left eye vision, it comes back for a bit and then goes after a while.
My daughter Maura who is 8 was just diagnosed yesterday with Pseudotumor. Like you. She has Chiari Malformation as well. You are so brave and she is too. We are knew to the Pseudotumor but have been dealing with Chiari for 2 years.
We too would like to see more research on this disease. Keep fighting as will we. You did an awesome job on your video!
I have the same condition that you have. I had to go through a spinal tap recently. I am on diamox now and like you had to visit many doctors before I was correctly diagnosed. I loved this video and was really touching. Please don't ever feel like you are alone. Be strong little sweetie. We will both overcome this ;-)
Sweet girl... She's brave & a fighter, just like me :) ... I know exactly what she's going through. I too have Pseudotumor Cerebri, had it since 2000. PTC patients suffer on a daily basis, with so many different symptoms of this very painful & debilitating condition.
But we should not be terrified or give up hope. Just have faith, think positive & keep up the fight :)
I have an eight year old son that has been experiencing this since Nov 08. Sixth nerve palsy, severe papilidema, four failed lp shunts, too many taps to count, but with 3 pills a day, eyes better, headaches gone, but tap just Wed. was 41. Would love to talk parent to parent to find answers.
I know what she is going through. I'm so sorry that she has this. I also have Pseudotumor Cerebri had it since 1997. I was just wondering how much eye site has she lost if any? We will pray for her. I hope she doesn't have to go through a lot of surgerys like I have. I'm not young. Keep your head up I hope things get better!!!!!!! Cynthia
I also have Pseudotumor cerebri. I've had about 7 spinal taps. I'v had it since 2007. The doctors wanted to give me a shunt but they decided not to. its hard seeing and sometimes i get sad but i'll over come it one day soon. I almost had to spend my 14th b-day in the hospital! but i got out just b4 my b day. I hope your doing ok.
awh she is very sweet and she's a fighter. I also have a Pseudotumor cerebri had it since 2005. Had lots of surgeries and etc..Doe's she have an shunt?
What a brave little girl. I myself have just been diagnosed with Pseudotumor Cerebri. Hearing her talk warms my heart. I, a grown adult, am terrified and here is this little girl who has been through much more still staying strong. You have a good heart and will do great things. Keep fighting.
20 comments:
Hi sweetie. I was just diagnosed with pseudotumor cerebri last week, and I am just starting my journey with the tests and seeing various specialists. You are a very brave young lady. Stay strong, even though some days that may seem impossible.
Could I use this video in a future project for pseudotumor awareness?
i cried so much because this is word for word what happened to me, and i'm 18 years old and she's just a kid. Shes so brave.
Are you on Facebook? There is a group on there called Intracranial Hypertension Awareness. It's a great group that would be good for your folks. Hope to see you on there if you're not already there!
You are quite a smart young lady! I can't say I know what you are going thru since each one of us with this horrible disease suffers a little bit differently and I can't imagine what it must be like for you to be going thru this at your age. I am a Mom and have 2 little boys age 6 1/2 and 2 and I know how hard it is for me to take care of myself and to not only take care of them but to play with them too when I have constant headaches, etc. Good luck Sweetheart!
My heart goes out to you because I was diagnosed with psuedotumor cerebri and the I've been dealing with the same thing and hope that there is some day a cure I just found a research center in New York for our condition it's called the Mayo Clinic and I hopefully will find some help here so I'm in your same boat living with the problem and wishing that it would get better sometimes on top of the shunt I have to have a spinal tap.
I too suffer with this condition like you do. My heart goes out to you and your family. I too hope a cure will be found.
You are a very strong little girl! I too know what you are going through, I've had Pseudotumor Cerebri for 2 years I was very scared and you are so young and so strong..Hang in there sweetie!
Oh sweet Kylie ... you are not alone so many of us know and understand your pain.. i wish you all the very best and i know there will be a cure one day soon .. xoxo
Kylie,
You are a very strong little lady. My wife was diagnosed years after seeking treatment for unexplained headaches. I can only imagine the experience and feel for those who suffer from ICH everyday.
Kylie's Folks,
I'm no doc but my wife only takes Diamox. Not sure of the whole story behind 17 pills but the diamox is the only thing she takes for the ICH. It is a diaretic (SP?) that reduces the amount of fluid she produces. It has helped but she still has some head aches. Hope that Helps
Good luck on the research and if you need anyone hit me up :) thanks--sammi
it's nice to know that I am not alone in this fight with PTC. I was diagnosed in 2007, right after I had my little girl. The constant migranes that kept me up all night for a whole year was horrible, I had a hard time taking care of my lil girl. finally I went to the Dr. for some help and my eye dr was the one who diagnosed me. I know exactly what your going through, and keep your chin up. I've lost my left eye vision, it comes back for a bit and then goes after a while.
Hello,
My daughter Maura who is 8 was just diagnosed yesterday with Pseudotumor. Like you. She has Chiari Malformation as well. You are so brave and she is too. We are knew to the Pseudotumor but have been dealing with Chiari for 2 years.
We too would like to see more research on this disease. Keep fighting as will we. You did an awesome job on your video!
Hey Haylie-
I have the same condition that you have. I had to go through a spinal tap recently. I am on diamox now and like you had to visit many doctors before I was correctly diagnosed. I loved this video and was really touching. Please don't ever feel like you are alone. Be strong little sweetie. We will both overcome this ;-)
Sweet girl... She's brave & a fighter, just like me :) ... I know exactly what she's going through. I too have Pseudotumor Cerebri, had it since 2000. PTC patients suffer on a daily basis, with so many different symptoms of this very painful & debilitating condition.
But we should not be terrified or give up hope. Just have faith, think positive & keep up the fight :)
I have an eight year old son that has been experiencing this since Nov 08. Sixth nerve palsy, severe papilidema, four failed lp shunts, too many taps to count, but with 3 pills a day, eyes better, headaches gone, but tap just Wed. was 41. Would love to talk parent to parent to find answers.
I know what she is going through. I'm so sorry that she has this. I also have Pseudotumor Cerebri had it since 1997. I was just wondering how much eye site has she lost if any? We will pray for her. I hope she doesn't have to go through a lot of surgerys like I have. I'm not young. Keep your head up I hope things get better!!!!!!!
Cynthia
I also have Pseudotumor cerebri. I've had about 7 spinal taps. I'v had it since 2007. The doctors wanted to give me a shunt but they decided not to. its hard seeing and sometimes i get sad but i'll over come it one day soon. I almost had to spend my 14th b-day in the hospital! but i got out just b4 my b day. I hope your doing ok.
awh she is very sweet and she's a fighter. I also have a Pseudotumor cerebri had it since 2005. Had lots of surgeries and etc..Doe's she have an shunt?
What a brave little girl. I myself have just been diagnosed with Pseudotumor Cerebri. Hearing her talk warms my heart. I, a grown adult, am terrified and here is this little girl who has been through much more still staying strong. You have a good heart and will do great things. Keep fighting.
Post a Comment