Thank You for posting this show idea! My baby boy ia TSC, neurogenic bladder, fatty filum & bowel issues; yet to be diagnosed. He has so much nerve damage in his thighs, many have told us he is never going to walk alone. This is a LIFETIME illness for which there is no cure & very little known long-term treatment.

My daughter has TSC and was misdiagnosed at birth. No one knows what it is when we tell them what she has. She has permanent nerve damage to one leg and foot and will have to be followed by a neurosurgeon, urologist, GI and orthopedist for her entire life.

This is a great show idea. My 5 year old son has had 3 surgeries in 6 months because of TSC and has bladder and bowel problems as well as cramping/spasms up to 20 times/day and the doctors have no idea what it is, please please help us.

I have Arnold Chiari Malformation and Ehlers Danlos. My spinal cord was de-tethered to cut some of the major symptoms of my Chiari, as well as some symptoms from a minor tethering of my cord.

My son suffered from many seemingly unrelated health issues - headaches, nausea, bladder and bowel problems, insomnia, depression, drug abuse - until he was diagnosed with chiari malformation and syringomyelia at the age of 19. Even after decompression surgery removed the cerebral tonsiils he has continued to have issues. Most of the doctors we have dealt with have no understanding of this disease and how it impairs the quality of his life. He feels like a pariah and I feel like I am frustrated.

Research into these conditions shows a lot of confusion from doctors and patients alike. We need to shed some light on these diseases, and get to the best treatments available for the ones who are suffering. Please use this on a show.

An informative show like this would be a great forum to share what little is know about this condition. At the very least, it would help those and their families feel connected. Our friends' young son has this condition, and they have had to be so brave and courageous, visiting different doctors, doing their own research, and enduring three scary surgeries, without much hope for improvement or a cure.

I have three nieces with Ehler's...they are in their late teens and the oldest suffers tremendously from pain and disability

My 10 year old bedwetter wiht 25% scoliosis, also has a tethered spinal cord and will have surgery to release it. I wish they would do a show on tethered spinal cord!

I am very interested in seeing a show, especially about Chiari 1 Malformation. I am 46 and was not diagnosed until age 45. I had learned to quit complaining about headaches at the back of my head about 10 years before I was diagnosed! No doctor would listen to me. I was told it was from depression and given anti-depressants. A new family medicine doctor picked up on my slurring of words. He then asked if I also had headaches. I said yes, and he ordered a brain MRI. I was diagnosed with a Chiari Malformation of 14mm. I was sent to a neurologist who sent me to a neurosurgeon who recommended surgery. I waited a year to make my decision to have surgery. I had begun to choke on my own saliva and on food, as well as having nonstop Chiari headaches, and other Chiari symptoms. On July 27th, 2009, I had posterior fossa decompression surgery with C1 laminectomy and duraplasty. Within 3 days, my Chiari headaches were gone! And the headaches have not returned!!! :) On Sept. 15th, 2009, I had repair surgery for a large pseudomeningocele. My own dura had frayed. I am now on the road to recovery. My neurosurgeon has told me that it will take a year for me to recover from having to have 2 surgeries withing 7 weeks. I am having some other issues, but NO chiari headaches!!!! :) And other Chiari symptoms are improving, too!! I have bulging discs, some cord compression, and degenerative disc disease to deal with. My neurosurgeon and neurologist is helping me with this problems. My neurologist has now diagnosed me with migraines!! I continue to have all-over body pain. I was diagnosed with fibromyalgia in May 2004. And I have osteoarthritis in several joints. And I have chronic myofascial pain syndrome. Plus, I have a whole list of other illnesses. But, I have NO Chiari headaches!!!!! :) I am so glad that I had decompression surgery in July. I feel somewhat better. I may have some related Chiari diseases (tethered cord, etc), but I can now better handle them without those horrible Chiari headaches. Chiari Awareness is needed. And exposure on national TV would be great!!!!!!!! :) Each state, including ND, needs a Chiari Awareness Month!!! ;)

was diagnosed with this condition in December 2009. I had never even heard of it and all of the sudden it was completey changing my life. I went from a healthy 32 yr old stay at home mom to being unable to care for my two children or myself most days. It would be wonderful to raise awareness about this condition so that it wouldn't be so terrifying for new patients being diagnosed. Also, more awareness would help more people find a daignosis they've been looking for for years. Unfortunately, most are made to feel like hypochondriacs until they finally happen upon a doctor who is familiar with the condition. The condition can cause lasting problems when not diagnosed early enough. It could also increase the number of specialists that are desperately needed. I'm blessed to live only two and a half hours away from a specialist. I know of people who have to fly to see a doctor. PLEASE consider doing a show about Chiari and Syringomyelia.

My 6 1/2 year old son has Chiari, syringomyelia and now tethered spinal cord. He was originally diagnosed in April 2008, had decompression surgery in August 2008 and will be having tethered cord surgery on 7/9/10. Please, please help us get the word out about these conditions and hopefully help get more funding funneled their way.

My name is santosh and I am 24 years old male.I have TCS and recently operated for a Dermoid tumor which is a free gift with the TCS. and i have a small hole at my lower back from my birth and doctors failed to warn my parents as they are not aware of this TCS. Doctors finally found that i have this problem and another operation is needed to untether my spinal cord. So what you people are doing i great and a kind of developmental deformity must be known by every doctor and parent.... so that no other person in the world will face this pain as TCS can be treated in the childhood itself... Santosh India uday.santosh@gmail.com