I just need someone who understands me!
Posted , 8 users are following.
I'm 13 years old and was recently diagnosed with Chiari Malformation. I have about every symptom and they are very bad. Along with Chiari Malformation I suffer from Complex Migraines. Due to all off that I was recently put in the hospital. It was very scary. It looked like I was having a stroke. Nobody knoes what I am going through. I haven't really told a lot of my friends. The ones I have just crack jokes and I just laugh through it. Then you have others who say are you sure you was sick. My family just feel bad for me. I need to talk to someone that can relate to me.
1 like, 18 replies
OccultEnemy madalyn_22940
Posted
Hi I know how your feeling with the headaches everyday. My solution when you get them because I too have borderline chirai 1 malformation is too lay down and rest. That has always worked for me. I take a very strong, I wouldn't say Motrin or Tylenol but something a lot stronger than them and it's over the counter extended migraine and it works wonders. If you say your friends are making crack jokes then they aren't your friends simple as that, I know too I'm only 15 I've been through the same thing but with other things. People make fun of me because I'm being tested for Cystic fibrosis also. Keep living life one day at a time. It'll get better just always keep in touch with your doctors.
madalyn_22940 OccultEnemy
Posted
Helperrt madalyn_22940
Posted
My daughter was 11 yes old when she had her 1st surgery which was minimally invasive, that's a surgery nevertheless that's takes about 3 to 4 hours and you stay in the hospital to ck that's all goes well. That's surgery relived all her pain in her head, stomach, yes the stomach pain was said to not be related to her chiari type 1 malformation. Please know that's 97 percent of her doctors had zero knowledge and all misdiagnosed her condition. Including two chief neurologists and one neurologist and two neurosurgeonseparate. Saying she has tension headaches or abdominal migranes, she had chiari malformations type 1, the most common type. That's 1st surgery lasted g for 4 and 1/2months then pain again, did another mri, very important to include the spine, which they felt not needed. You must insist they do the mri of your spine as well as head and neck. This as she had a continuing syrinx; a fluid filled sacrifice that's is a common result of the chiari, that's following decompression surgery typically will go away. My daughter then needed a end surgery to really decompress her chiari, that's nvolvrs opening the spinal cover a making a patch to give more tomorrow I advise you take tedeschi decompression surgery with a due platy that's Ives the most decompression to the condition. It worked but the longer you wait to decompress via the surgery the longer nerve problems can occur. Feel better. Wishing you God's healing.