Dan with Ethan

Sorry, no Scripture passage today, but a prayer request. As you may have seen in a previous blog, my son Daniel has chiari symptoms: continual headaches, fatigue, random stabbing pain, sore throat, tingling scalp, difficulty concentrating, random trouble with vision, and I could go on and on. They change over time. He has had the symptoms since August. We finally got an appointment with a specialist. He said most people have had the symptoms 8 years before they get to him.

If his insurance company oks it, we’ll leave for Milwaukee on the 8th of February and by the afternoon of the 10th have a diagnosis and suggested plan of treatment, surgery or otherwise.  Thank you so much for your prayers! Daniel was very proactive in learning to read his MRI and finding what caused the symptoms. He can talk like a doctor about the brain stem. You can tell I’m a proud dad. I’m also aching for him all the time knowing he is constantly suffering as he tries to hold down his job (programmer). He’s a fighter, but a very quiet, mellow one that trusts the Lord.

So here is my prayer request. Pray that we do get approved, get the right diagnosis and treatment plan, and a safe trip on the icy streets of Milwaukee. This AZ boy (Paul) isn’t use to driving on ice. BUT ALSO, pray for the thousands of undiagnosed and misdiagnosed people with chiari that are suffering day in and day out. Here is a link to the Discovery Health story of one young lady with chiari malformation. http://www.chiaritvspecial.com/chiarivideo.html

Her chiari condition is very similar to Daniels in that it was difficult to diagnose. Thank you all so much for your prayers!

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Today won’t be my regular blog from Scripture but instead sharing with you a prayer request for my son.  He’ll be 30 in March. In August he was at a camp and did something that yanked his head. He began having constant severe headaches like migraines,  Chronic fatigue, problems with his eyes, tingling in arms and scalp, and he could go on and on with the syptoms. Doctors couldn’t figure it out. He noticed the MRI had a note -borderline chiari. He looked it up and the symptoms match.

Chiari is a crowding of the brainstem. Many people have the malformation without symptoms, but for some reason, often brought on by trauma like he had at camp, the symptoms come on like a Mac truck. The problem is there is no easy way to diagnose it and many neurologists are unfamiliar with it, though it affects about 1 in 1000.  Some people just waste away never able to figure out what is going on. Discovery health did a special on one girl (affects women more than men) who after 4 years of suffering was pretty much wheelchair bound. Eventually it can damage the top of the spinal cord and cause paraplegia.

Daniel at work

Once Daniel knew what it was he started looking for a doctor. There are only 3 in the USA that specialize in it. The closest to us is in Colorado. The problem is they are so backed up. Doctors are discovering that a number of illnesses like scoliosis and fibramyalgia and even MS are actually chiari, so chiari specialists have a waiting list. It has been five weeks since Daniel got all his paper work in to the Doc in Colorado and the doctor hasn’t seen it yet. Meanwhile, Daniel is struggling to keep his job. Working at any hour he is able.

The doctor may not take him once he does look at Daniel’s info. Because Daniel is borderline – meaning the protrusion of the brain into past the skull is less than 5mm  – even though he has all the symptoms, he could decide not to do it. Doctors are afraid of lawsuits. I don’t know if that is the case with this one. We pray it isn’t. So here we are – waiting – enduring, knowing the answer, but just hoping the Doctor will take him.  Please pray with us.

The solution is a divine touch from God OR decompression surgery, which basically means removing some of the skull. Thanks for your prayers!

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