All Blog Posts (182)

Dr. Oro said that my daughter has a very serious malformation, not the worst he has seen but very serious, 15mm. with very little flow. We are going to schedule surgery next Tuesday, I hope they are able to get her in soon. She has had so many problems for so long and always been diagnosed with something else. Now she can hardly function. Family support has been on and off. It has been a blessing to hear all of your story's, it has helped so much.

I’m the co-founder of this site and help run a group called Ben’s Friends (www.BensFriends.org) that builds patient support networks for people with rare conditions. I do this cause I love it. I’ve met so many wonderful friends on this journey.

It all started when my buddy, Ben Munoz, had a stroke caused by a rare condition called AVM. Ben survived but during recovery he couldn’t find a support group…so he started one called…

Sorry that I've been AWOL everyone.

I'm preparing for the fight of my life against my employer in regards to human rights violations.

Wish me luck... im gonna need it.

http://www.facebook.com/l.php?u=http%3A%2F%2Fsocsecnews.blogspot.com%2F2012%2F02%2Fposner-on-templates.html&h=GAQE6OT-nAQGMDkseXOFg7Hy3cOJXS9Qdy0HEOUBexpt1cw

This is an interesting read -

It was posted on Facebook by Roz Remmel.  I thought it an important topic to…

Yesterday I took my little guy back to his neuro dr. And now he wants to go ahead with the decompression. Being a Momma, I worry if this is the right decision. Or should we put it off a little longer. His symptons are mild, leg pain and head pain. his neuro doctor worries it could get worse. But I am just not sure if its the right thing to do. He is so little to have such a big surgery. Will this cure him from chiari if we go thru with it?

Thank you for all your warm welcomes.  not sure how to navigate on this website so forgive me if i dont know what im doing. 

Hi everyone,

Im just curious if anyone has ever had pain in there shoulder? I've had really bad pain in my shoulder since wednesday and it really hurts to move it. Sometimes the pain spreads to my back and chest but is mostly in my shoulder. Should i go to a doctor ive never had a pain like it before.

Thanks Love caroline

Hello, I developed a syrinx, syringohydromyelia from a slip on the ice Dec 9, 2007. Slammed my spine on the ground at thorcic 5 level and now years later have this spinal cord cyst filled with fluid from T5 through T10 and is growing downward. My neuro told me to go to support sites for Chiari so here I am. The possibility of me developing Chiari II malformation in the furture is eveident. I am looking for someone similar to speak to about treatment and symptoms. I have all types of awful…

Hi. I am looking for people who have syringohydromyelia, a spinal cord cyst filled with fluid that leads to Chiari II malformation. The shorter term is syrinx. Mine exists from a fall on Dec 9, 2007 on my spine due to slipping on the ice. It started from thoracic 5 and had spread to thoracic 10, (T5 to T10) last MRI Jan of 2011 and due for a new one...it is growing downward for now. I have other autoimmune disorders so I wanted to find the symptoms of the syrinx and talk to others so I can…

hello again...i was just wandering are there any good new stories out there?? My daughter is 3 months post op from decompression surgery and she is doing great (besides swelling...did a CT Scan and said no fluid so just will take time to go down) but i find it hard to get excited and let my guard down cause i read about chiari all the time and its all so bad...im hoping my daughter is a lucky one and this is the end of the road for her but im scared it wont be cause of all the bad stuff i…

Hi Everyone,

It's been a while since I've been on here and posted anything. I don't know how many of the people involved in this group also suffer from spina bifida or hydrocephalus, but if their is anyone that does or knows information about what I'm about to post, please feel free to respond.

I was born with spina bifida Myelomeningocele as well as hydrocephalus. Having had both since birth, I've also had a shunt…

Over the last year or so, I've been waking up on a daily basis with a very bad cough.  I would spend the first 45 minutes to an hour of my morning standing in the shower, feeling like I was going to cough out part of a lung.  I saw an allergist a couple of times, and was told that it was basically the result of a "nasal drip".

Months of Zyrtec use and a couple of expensive prescriptions later, and I'm still hacking like crazy.  Only now, it's more frequently.  

Within the last…

I had decompression surgery on February 11, 2010.  On March 18, 2010, it was determined I had a large psuedomengeocele.  I was placed into ICU and was tapped to remove CSF fluid.  I was told I had hydrocephelus due to psuedo tumor cerbri. On April 16, 2011 I surgery to get a right VP shunt. Everything got better...for a few months.  I started getting headaches again and blurry or double vision episodes.  I finally went to the ER in September.  The ER doctor said I had fluid again that I…

first my now 3 yr od had chiari decompression surgery on nov 8 of ast year and everything looks... fine we went to her ns for a follow up appt last thursday and she didnt like her swellingso the did a CT scan to see if she had a build up of spinal fluid and they called that afternoon with the results (no fluid build up!!!!!) and said we will do an MRI in 5 months if the swelling dosent go down but that it should sometimes it just takes a really long time...i was wandering if anyone else had…

So.....Within the last couple of weeks, I have been told everything from "Your symptoms can all be explained by fluctuations in your blood sugar", to "I can't find anything wrong with you".  Meanwhile, I have three...count them...three, MRIs since March of last year that show a 5mm Chiari.

Practically every single doctor's appointment I have had in the last 15-20 years can be explained by Chiari.  The stomach issues that I have continually had for the last 13 years.  Possibly…

I want to appologize to all for not being on and checking in lately we have been undergoing much in our house - good and bad. First the good my 5 year old started Kindergarten this year and we homeschool, and my oldest daughter who has been engaged since October told my husband and I in December that she was pregnant so I am going to be a grandma

Now for the bad - for the last 6 weeks Lily has been throwing up. I called to get her into see her GI specialist and found that he switched…

ChiariSupport Members, Friends and Family,

As we begin a brand new year, envigorated with greater joy and compassion, we renewed our greater commitments to our community. BensFriends grew tremendously in the past three years, and we want to take this moment both to thank you and to make a promise to continue fulfill our mission: to ensure that everyone in the world with a rare disease has a safe place to go and connect with others like…

My neurologist appointment is tomorrow morning and I'm getting pretty nervous. More nervous than I thought I'd be. The meds aren't helping so I'm sure we're going to discuss the botox injections and possibly even a pain block just to get me through the next few days.

With classes started back up, I'm getting even more stressed which is making my headaches worse. We're only a week into the spring semester and I'm already behind. All of my classes require a lot of reading and…

It's been three months since my surgery and stroke. After lots of physical therapy and frustration, I am finaly healthy.

It has been a long road. Learning to walk, talk, rite, even bath and brush my teeth and hair were very humbling. The whole time I keep one thing on my mind and that was I wanted to be alone with my childern. I couldn't then because i couldn't care for them on my own. So as long as they were in my mind I worked hard and i beat the stroke!!!!The surgery in my opinion…

My 2yr old little boy was diagnosed with chiari I at 9months. The doctors also found his spinal cord was tetherd. They did a tethered cord release back in Feb 2011. Now back in November he started saying "my leg hurt Mommy." At first I just thought he pulled a muscle. But on Christmas morning we woke crying & saying his leg hurt. I got reall worried, so off to the Dr we go. They did xrays, everything looked normal. So I called his neurosurgeon, he did another MRI to make sure his spinal…