Where to go,when your very frustrated

Hi, I'm very new here. This is the short version of my story. July 2008 my daughter was diagnosed with chiari malformation, 4 months after her diagnosed I also was diagnosed with chiari. She had her first surgery Nov. 2008. Everything seemed to be getting better and her syrinx started to shrink. Then 4 months after her surgery she was hit in the back of the head right where they did the surgery with a baseball. No she was not playing baseball,she was at school out side and some boy found the ball went to throw it to his friend and it hit my daughter. So couple months later she started to have problems again. So Nov. 2009 she had another surgery this time they just removed the C1 vertebrae due to it was causing a tourniquet around her spinal cord. Some symptoms got better some stay the same. The begging of 2011 her symptoms started to get worse again and new symptoms started. Her headache got worse, her leg pain got worse and she started to choke everytime she swollows. She can not sleep at night due to pain and incontinence. Nov. of 2011 she was admitted into the hospital for very extreme back pain,she could not walk due to the back pain. The Dr at the hospital tryed to tell me it was in my daughter head and even brought in a psychologist and they said it was not in my daughter head. I knew it was not in her head. The Dr could not found out what was wrong and said probbally because of her spinal cord and sent her home in pain. She end up in a wheelchair due to not being able to walk,the end Dec. she started to use a walker to walk. She has very hard time with balance. Jan 12 my daughter was admitted again to the hospital due to her right arm swollen from her shoulder down to her finger and extreme pain. After several test they told me they could not find out what was wrong. These are the same Dr she had last time,being the person I'm I asked them dont you want to bring in the psychologist to make sure its not in her head,I'm sure some how she making her brain make her arm swollen lol.They sent her home again in pain and vomiting. After many Dr appts and trips to the Er we found out her colon has stop working. Has anyone else had extreme back pain,swollen arm,colon stop working? Does anyone if hormones have any effects? We are trying to find new Dr to treat her. Its very hard since she is pediatric.


Your poor daughter and you have already been through so much:( I am so sorry:( It breaks my heart when I hear about children suffering with this. My pain/symptoms didn’t start until I was in a car accident at the age of 27. I hate that some doctors have the nerve to say it’s in our heads! I loved your comeback to them when you went to the ER for her painful and swolen arm. In regards to your questions, I haven’t heard about colon problems before but maybe someone else on here has. I do have experience with severe back pain though. I have ruptured discs in my lower back and syrinxs in my lower and upper back. I have horrible back pain from top to bottom. Has your daughter had a full spine MRI to check for a syrinx? A syrinx, which is a related disorder of Chiari, causes severe pain and numbness. A syrinx is basically a cyst of cerebral spinal fluid in your spine. I haven’t had my arm swell like your daughter, but my legs and feet are now swolen a large majority of the time. My NS didn’t take my pain/symptoms seriously either. So, I’m going to travel up to Seattle to see a NS that specializes in Chiari. There is a list of NS that specialize in Chiari on a previous discussion. If possible, you should take your daughter to see one of them. I hope this helps and your daughter feels better soon!


Thank You Crystal, she has syrinx its all down her spinal cord. She still has blood in her spinal cord. She also has hemorrhage pockets on her spinal cord. Her NS being doing this for over 25 yrs. he said he has heard of the hemorrhage pockets on the spinal cord,my daughter is the first one he has ever seen. There is total 13 case of it since 1920 but know one knows how to treat it. I will look at that list of Dr. Its worse when your a child,they think she making it up to get out of stuff. I know is not the case at all. Good luck with your apppt with the NS in Seattle.