Tuesday, November 26, 2013

Exciting News: Chiari Angels Organization


There are many Chiari organizations raising funds for "research" with no direct impact to suffering patients. Chiari Angels is different in that we intend to help patients plan and finance appointments to Chiari Specialists.

As a Chiari patient and dedicated patient advocate I see Chiari patients needlessly suffering at the hands of uneducated doctors. The truth of the matter is there are only a handful of true Chiari Specialists across the nation. Says, Founder F.C. Kerr

The purpose of Chiari Angels organization is to fund specific Chiari projects which bring awareness, education, and hope to patients which suffer from Arnold Chiari Malformation and associated illnesses.

Chiari Malformation is a condition in which the cerebellar tonsils descend into the spinal canal causing compression of the brain stem and interruption of spinal fluid flow. The condition is VERY SERIOUS, yet most doctors dismiss the condition as a non-symptomatic anomaly found on MRI's. Many neurosurgeons can do posterior fossa decompression surgery, but few do it correctly! (resect & cauterize cerebellar tonsils) Most patients aren't even aware of the newest procedure which prevents re-herniation of cerebellar tonsils & re-compression of the brain stem.

Sick patients are shuffled from doc to doc and subjected to torturous tests, various drugs, and useless treatments. Minimally invasive surgeries leave many patients in worse shape than before surgery! Many patients have lost their income/insurance and are unable to afford the necessary appointment with a Chiari Specialist. There are only a handful of doctors that recognize Chiari Malformation symptoms, regardless of size. We want to help patients in need find ways to get to "true" Chiari Specialists. Quality of life can be dramatically improved by seeing a Chiari-Specializing Neurosurgeon.

Visit the Chiari Angels Start up Fundraiser.

Visit the Chiari Angels Site.

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Friday, September 13, 2013

Allie's Story



Hi everyone, this is Allie’s Mother. She is 14 years old and her story starts about 2 and a half years ago when she was constantly sick with 3 and 4 sinus infections a month. All of the doctors I spoke to kept telling me that it is normal for a kid to be sick this often because of the germs in school. Nevermind the fact that my son was never sick that much and he too was in school.

November came and with it came more sinus infections. She completed a round of antibiotics on a Friday night and was feeling better. Saturday came and she was a little stuffy, so no big deal. Then Sunday came and we were in the Emergency Room and she had pneumonia. Finally, I am able to get a doctor to agree with me that she is sick too much. A referral to an allergist to check her immune system showed an allergy to cats and dogs, but nothing severe. So we were told that we could keep our pets as the allergens would be in the air for up to 3 years anyway. They did skin testing on her back: 34 pokes. Then she started having trouble breathing, so they stopped the test. They were one step away from having to epi her when she finally started to respond to the Benadryl and breathing treatments. She is basically allergic to the outside world. Enter tons of meds and a nebulizer inhaler for asthma. We were told a cottonwood tree 5 miles away can kill her. We finally got her allergies at a manageable level, but the allergist didn’t see a reason for her to have soooo many headaches.




The referral to a neurologist took forever between finding one willing to take her between insurance and all. We drive 2 and half hours one way to see her. She orders an mri and wants to start her on amitriptyline to help with the headaches. But, with the family history of heart conditions she wants to get an ekg first. No problem, no worries. Almost a week goes by before I finally call them to see if she can safely start the meds. The nurse says the ekg came back showing something that she needs to discuss with the doctor. Two hours later, I’m still waiting for them to call me about the ekg. I call them again and I’m in tears scared out of my mind because they saw something. I’m told she has afib and right ventricular conduction delay and we received a referral to a cardiologist. Well they tried to find one close but the only pediatrician cardiologist around here that takes our insurance looked at her results and didn’t feel he was the best doctor for her. So, they refer us to a doctor 3 and a half hours away. This doctor says yes to the afib and right ventricular conduction delay and also long qt syndrome. No meds were prescribed; he just wants to keep an eye on her. The mri results come back showing Chiari One Malformation 6mm (now 7MM) and we receive a referral to a neurosurgeon 3 and a half hours away. The neurosurgeon says he wants to try other things before performing surgery. Back to the neurologist we tried topamax nerontin dyamox.... nothing is helping. We are referred to a headache clinic 2 and a half hours away. It takes MONTHS to finally get into the headache clinic. Meanwhile, she notices a lump on her foot. We call the family doctor and go in. He says it looks like an infected spider bite. It doesn’t respond to antibiotics, so we go back to him again and he does an ultrasound and he says its phlebitis. Steroids do not help either and now it’s in both feet. He orders an mri which shows synovitis. Synovitis doesn’t just happen, so now we have to find its cause. The blood work comes back negative for lupus and rheumatoid arthritis. So a referal to a rheumatologist 3 and a half hours away is made. She sees allie and says she has rsd: reflex sympathetic dystrophy. It’s basically ms only more painful. It can render her a vegetable at anytime. She begins having pain in the knee and we go back to the doctor. The doctor says it’s growing pains and if it’s not better in a couple of weeks to call back. Well, I’m sure you guessed it wasn’t better. The mri of the knee shows plica inflammation. It will reoccur whenever it wants. We go for a simple eye exam and she is diagnosed with severe astigmatism and photophobia. She had received an arthritis diagnosis in her wrist shortly before all this other stuff. She broke wrist her at one time.




So present day and many, many doctors later she also has been diagnosed this month with... pots and Nero cardiogenic syncope. Both of these are cardiac so now up to 5 heart conditions. She also has episodes of fainting and temporary paralysis. Wednesday, she was feeling icky, so doctor here we come. She’s diagnosed with a severe ear infection, severe sinus infection and mrsa. She hasn’t been to school since a little over half way through 7th grade. She is supposed to be a freshman this year. Luckily, she is going online and is way ahead of the game. We try really hard to keep our spirits up. She takes over 20 pills a day and that is just the pills not counting the 3 nasal sprays or the antibiotics that don’t seem to be helping again. If you made it through this whole post and read it all you are amazing!

If you wish to make a donation for Allie's care, please visit any of the following fundraisers:

T-Shirt Fundraiser: http://www.tfund.com/JENNYRAILING. CafePress donates a portion of the proceeds for each T-Shirt sold for Allie.

PayPal: http://www.paypal.com. You may send a secure donation through PayPal for free using your debit card, credit card or checking account. At this time, PayPal does not keep any portion of the money when sent using the friend or family member option. Please send PayPal donations for Allie to: jlrailing@att.net.



Thank you for your support and prayers for Allie!