NFT: Chiari 1 Malformation

My child was diagnosed with this a year and a half ago. He subsequently had decompression surgery at CHOP and thankfully his syrinx has shrunk to half the size it was prior to surgery.

Obviously, there is a lot more to the story, but know you are not alone! In fact, Niagara Falls was illuminated purple to bring awareness to Chiari not too long ago.

I'm not sure if it is the same as a Chiari 1 Malformation.
Apparently it is hereditary, and of the 21 or so symptoms, I display at least 10 of them as well, but I have never had myself checked for it.
I believe there are many different Chiari Malformations, mostly unrelated, in different areas of the body. They are named after the Dr. who documented them in post mortem examinations.
All the best to you.

Ive never even heard of the conditions youre referencing but I wish you and your family the best. Listen to the docs and stay positive.

who have it. Both pushing 60. So far the only symptoms are occasional noise sensitivity and occasional panic attacks. Nothing life threatening.
The noise can be an issue for example one of them had to leave the house when the smoke alarm battery was low and chirping.
Wish you the best.

Found a couple years ago looking for something causing other pains but this wasn't the cause. I freaked out and it is a scary thing to think about (don't watch the spinal surgery videos btw). You aren't alone. I got MRI's every 3months for a year and now just annual to monitor if they grow/change but I fortunately am unaffected otherwise. In fact I have a strange back ache last few days, probably from raking leaves, but it makes me think something is up so I might move up my MRI. Apparently they find these things more now since we are lucky to even have MRI and many people have them naturally not knowing it until a MRI for something else and/or it is no big deal. Certainly though this is the spinal cord and it can be serious. Try to stay calm, pray, and see the best doctors you can. You aren't alone and I wish you the best.

Sorry to hear about your recent diagnosis. I was diagnosed with Chiari 1 malformation with Syringomyelia in 2004. I was seen at the Chiari Institute on Long Island. My symptoms were mimicking a heart attack due to the placement of my two syrinx. Unfortunately, like you said, surgery was my only option with this disease. My surgery lasted 8 hours and the recovery was very hard at times.

The best piece of advice I can give you is to get multiple opinions. If surgery is recommended, then find a doctor who does this type of surgery on a regular basis. There is a lot that goes into this and you’re going to want a well versed doctor.

Best of luck to you, if you need any info about who I saw, just let me know.

In comment 15458145 PGN111317 said:

Quote:

My child was diagnosed with this a year and a half ago. He subsequently had decompression surgery at CHOP and thankfully his syrinx has shrunk to half the size it was prior to surgery. Obviously, there is a lot more to the story, but know you are not alone! In fact, Niagara Falls was illuminated purple to bring awareness to Chiari not too long ago.

My son had the exact same surgery at CHOP. He had two syrinx down his cord. Both have now shrunk. He had surgery at 16. He is 27. After decompression continued his wrestling career all the way through college and is now a fireman.

If you are asymptomatic and without syrinx you most likely only have to monitor over time. I have another kid man I coached who discovered he had Chari at around the same time we discovered my sons. He was asymptomatic and to this day is still asymptomatic.

If you want to talk about our experience I am always willing to help people who are in the situation we were. I have a lot of notes and info saved. If you are over 18 obviously CHOP is not an option but I would suggest only going to one of three hospitals in our area. UPENN or NY Presbyterian/ Weil Cornell or Johns Hopkins. If you have to have surgery do not play around. Go to the best.

In comment 15458660 MrHankey said:

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Sorry to hear about your recent diagnosis. I was diagnosed with Chiari 1 malformation with Syringomyelia in 2004. I was seen at the Chiari Institute on Long Island. My symptoms were mimicking a heart attack due to the placement of my two syrinx. Unfortunately, like you said, surgery was my only option with this disease. My surgery lasted 8 hours and the recovery was very hard at times. The best piece of advice I can give you is to get multiple opinions. If surgery is recommended, then find a doctor who does this type of surgery on a regular basis. There is a lot that goes into this and you’re going to want a well versed doctor. Best of luck to you, if you need any info about who I saw, just let me know.

What was your experience at The Chiari Institute? When researching for my son we decided to stay FAR AWAY!

My Chiari Institute experience was a good one, although I understand why you would be hesitant to go there after the scandal of Dr Milhorat. At one time people traveled the country to go there, but that reputation quickly evaporated over his actions. My one recommendation, if at all possible would be to see their neurologist, Dr Kula. I’m not even sure if he’s practicing anymore, (age), but he was by far the most thorough neurologist I have ever been too, and I’ve been to many.

Like I said, currently asymptomatic but I have calls in to Hopkins and Mayo Clinic in case I need to pursue further.

In comment 15458737 OnTap said:

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Like I said, currently asymptomatic but I have calls in to Hopkins and Mayo Clinic in case I need to pursue further.

How old are you if you don’t mind me asking?

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In comment 15458660 MrHankey said:

Quote:

Sorry to hear about your recent diagnosis. I was diagnosed with Chiari 1 malformation with Syringomyelia in 2004. I was seen at the Chiari Institute on Long Island. My symptoms were mimicking a heart attack due to the placement of my two syrinx. Unfortunately, like you said, surgery was my only option with this disease. My surgery lasted 8 hours and the recovery was very hard at times. The best piece of advice I can give you is to get multiple opinions. If surgery is recommended, then find a doctor who does this type of surgery on a regular basis. There is a lot that goes into this and you’re going to want a well versed doctor. Best of luck to you, if you need any info about who I saw, just let me know.

How has life been post-surgery? I have a C Spine MRI coming up to determine if there's a syrinx. I have no symptoms, and nothing showed in the limited view on the head MRI but I'm terrified to the point I don't want to do anything active.