Chiari in the Media

Hope you all had a wonderful Thanksgiving! I have been sick since then. Sinus Infection, Bronchitis, blah. Day number 15 for this. I went to the doctors on Tuesday and was given meds. Hopefully they work.

My boyfriend gave a presentation in his class this past week on Chiari Malformation. I'm happy he did so; he's showing support and spreading awareness! Too bad I was sick and had to miss it. I would've loved to sit in or act as a visual aid.

Anywhoo...onto Chiari in the Media:

We want more awareness right? So far it has been on some local news stations, newspapers, tv shows like House, Private Practice, and Extreme Makeover: Home Edition, and Discovery Health.
(If you have anything I don't list...please post it in a comment! I'd love to see it!)

Although they may not all be the best representations of Chiari Malformation...it is at least getting the name out there. Spreading Awareness is a big deal in helping with research.

TV:
Discovery Health:
"Chiari TV Special"

CSI Las Vegas Episode
"Internal Combustion"

Private Practice
"A Better Place To Be" (google for link)

House
"The Choice" (google for link)

News Articles:
HealthMad
Living with Chiari

Conquer Chiari
Conquer Chiari Walk 2010

WTOV - 9 (Ohio)
Hundreds Walk for Chiari Malformation

WKBW-News 7
Chiari Malformation & Syringomyelia

ABC-Good Morning America
Medical Mystery: The Boy Who Couldn't Sleep

KULR - 8 (Montana)
Chiari Malformation

The computer is freaking out from searching right now...so I may post more later! Again, if you have any links on news articles, videos, etc please post them!! Thanks!

Don't forget to share my blog on your site and help spread Chiari Awareness!!

-Alicia

Research

First off...

Happy Thanksgiving!!

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Onto research...

Here is what I've found on some recent research going on for CM/SM:

(I've only posted a few.)

DUKE CENTER FOR HUMAN GENETICS STUDY
The Duke Center for Human Genetics is actively recruiting families who have TWO OR MORE family members with Chiari type I malformations (CMI), with or without syringomyelia. These family members must be related to each other by blood, and BOTH must be willing to participate. Our work is centered on determining whether or not there is a genetic cause to the development of CMI. Hopefully in the future this will lead to better ways to diagnose and treat CMI.
Participation in the study involves:
1. Read and sign consent forms
2. Provide a blood sample from family members both with and without CMI
3. Family history telephone interview
4. Complete a medical history questionnaire
5. Review medical records and MRIs to confirm the diagnosis of CMI/S
For more information or to enroll in the study, please contact the study coordinator at 1-877-825-1694 or chiari@chg.duhs.duke.edu.

(Taken from www.csfinfo.com/research)


Study by ASAP

Prospective Evaluation of Cognitive Function (Brain Fog) Among Individuals with or without Syringomyelia Before Decompression Surgery as Compared to Post Surgery

Purpose of the study: Patients with Chiari I Malformation often complain of cloudy thinking which can impair their productivity at work and their personal interactions. Improved understanding of these cognitive (thinking) problems in patients with Chiari I may lead to better treatment strategies. Research is required to answer these important questions: 1) Do cognitive (thinking) problems in patients with Chiari I Malformation result directly from the malformation or from another cause? 2) Do cognitive problems improve after surgery?
Researchers at Spalding Rehabilitation Hospital, Aurora, Colorado, have designed a prospective clinical research study of 50 patients with Chiari I malformation who are candidates for surgery. The intent of the research is to evaluate if Chiari I malformation affects cognitive function (normal thought processes). Dr. Cammy Chicota, a clinical neuropsychologist, is the Principal Investigator for this study. Standardized interviews and pen-and-paper tests will be used. Patients will be tested before and again 3 months after surgery to see if the surgical procedure resulted in any changes in these tests. A single neurosurgeon, a single type of surgical procedure, and a sole neuropsychologist will be involved, which makes it likely that any change after surgery will be related to the surgical procedure and not to other factors. An ASAP grant in the amount of $24,020 has been awarded to support this important clinical research study.

(Taken from http://www.asap.org/) More research posted there.


Enjoy your turkey!:)Well that's all the time I have for now to look things up! I will post more when I have the chance!

Handbook

I found this .pdf handbook on ASAP. It's 43 pages and has a lot of information on CM and SM.

A Handbook for Patients and Families

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Another repost:
Living With Chiari

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I'm hoping to have more time to post stuff. Eventually I'd like to post other Chiarians stories! If you would like to share your story on my blog, send me message on facebook!


Comments are appreciated! Suggestions for what you would like me to post about are welcome too:)

A Real Horror

My story

I’ve always had headaches and migraines. During 7^th-10^th grades they got progressively worse. It was sophomore year in March/April of 2003, when the pain got the best of me. I was waking up in the mornings with so much head and neck pain, that it forced me to throw up. The puking eased the head pain for awhile. I was missing a lot of school or was late because sometimes it was so bad that I just couldn’t deal with it. There were days where I couldn’t move my neck or turn my head at all. Some other symptoms I experienced were numbness/tingling in my limbs, lightheadedness/dizziness, decreased sensitivity to temperature, balance problems and more. Finally I went to my family doctors to see what was going on. He had me try Imitrex for ‘migraines’. It didn’t help at all. In fact, it only added muscle pain in my shoulders while it was in my system. I went back to him again, this time while my head wouldn't turn. He ordered an MRI and then referred me to a Neurosurgeon without us even seeing the results.

I saw Dr. Robert Schlegel of York Neurosurgical Associates in York, Pa. Dr. Schlegel ordered some more MRI’s and there we found out I had something called Chiari (Key-r-ee) Malformation and Syringomyelia (sear-IN-go-my-ELL-ya). At the time I didn’t fully understand what it was but I got the gist. I understood that the lower part of my brain was growing down through the hole in my skull (foramen magnum) and putting pressure on the back causing the head/neck pain and vomiting. Also, that I had a pocket of fluid in my spine that was caused from the pressure in my head. Dr. Schlegel told us about Decompression Surgery and how it could help relieve the pressure but was not a cure. They would remove a small part of the base of the skull. And if they had to, part of the cervical vertebra (C1). (I wasn’t taking it all in at the time. When I realized I had to have surgery I was worried about the fact that part of my hair was going to be shaved off and that was pretty much it.)

Surgery was scheduled for July 25^th, 2003 at York Hospital. Dr. Schlegel and Dr. Winer performed the surgery. I was told afterwards that it was good they got in there when they did because the base of my skull was eggshell thin. I was in ICU (Intensive Care Unit) for a little while recovering. The pain after surgery felt much worse than before. It felt like my brain was trying to push out from every opening it could find. There were constant ‘explosions’ of pain going off inside my head. I was constantly puking from the pain. I couldn’t keep any food down. I was ‘eating’ ice-chips. The pain medicine they gave me didn’t seem to help. I hardly slept. My mom stayed with me every night because I didn’t want to be alone. I was finally moved to a regular room but unfortunately, I was put on the pediatric ward. There was always some kid crying or screaming, that didn’t help. All I wanted was to go home. They wouldn’t let me leave until I was able to get food down and keep it down. I also need to get up and walk around daily. My walks around the nurses’ station were blurry. I couldn’t see (because I wear contacts/glasses and didn’t have them because I was in too much pain to bother) and was very dizzy. I was in the hospital for a week.

I was finally able to go home when I kept some food down. Dr. Schlegel sent me home with Percocet for pain; which did not help at all. We hardly made it half way home before I started vomiting again. Every bump and turn was murder. The following week I had a follow-up MRI and visit with Dr. Schlegel. I was still having trouble keeping food down. Mom bought something like Pedialyte and I was at least able to drink that for some kind of nutrition. I still couldn’t sleep and the pain was not getting any better. Dr. Schlegel prescribed a different medicine for pain and to help me sleep. After taking that (I do not remember what it was) the pain started to subside and I was finally able to get sleep. I was beginning to keep food down. It took about 4 weeks to recover and start getting back to being myself. When school was starting I was given the chance to hold off until January, I did not want to fall behind. I fought hard to start school and live through the pain I still had. I was not symptom-free. It was not the same pain. Nowhere near as bad. I was not puking every day. I am restricted in the activities I can do. I can no longer ride roller coasters, play contact sports, and things like that. I have friend 'head gaurds' at rock concerts when jerks throw glass beer bottles through the crowd and mosh. Haha they cover and protect me well!

Today I still have head and neck pain, numbness/tingling in my hands and feet, lightheadedness and dizziness, balance issues, trip over my words, etc. I may look fine and normal, but looks can be deceiving. Not to say that I’m always in pain, but Chiari is usually kicking me somewhere.

Chiari Malformation affects about 1 in 1,000 people. 

Comments are appreciated :)

Treatment and Pain Management

Treatment
(Your doctor will suggest the best option)

Posterior Fossa (Brain) Decompression Surgery - A piece from the base of your skull and sometimes the top part of the C1 vertebrae is removed. This is to allow more room for the brain and to relieve pressure. The relief of pressure should help the flow of Cerebralspinalfluid (CSF).

Illustrated explanation

Pain Management

For me personally, when I have head and neck pain... I go right for my icepack. It's a rectangular shape and molds around my neck. It freezes the pain. It doesn't always work; but 9/10 times it helps better than heat for me.

There are the usual pain relievers...which don't work at all for me. (Tylenol, Ibuprofen, Aleve, etc)
 As always consulting your doctor is the best for pain management. It is hard to find things that truly work to stop the pain. There are migraine preventative medicines and ones to take at the onset of a migraine. Although, if the pain is not a normal headache/migraine...well we're pretty much screwed.

I am not a doctor. My information comes from personal experience and Internet research.


Other Stuff....
Just a repost for the article on Chiari...Please read the link:) Click it, read it, repost it on your site/blog/fb/twitter whichever!

Living with Chiari on Health Mad

Also, I just recently got my MRI's on a CD so I will be posting them soon.

Thats all for now:)
-Alicia

Symptoms List

Every person with Chiari is affected differently. This is a general list of symptoms.

• Headaches/Migraines
• Neck/Head pain
• Pressure in the head/neck
• Dizziness
• Lightheaded
• Tingling/Numbness in extremities
• Balance problems/clumsiness
• Memory problems
• Vision problems (spots, double vision, 'halos', etc)
• Restricted Movement
• Pain with bright lights and loud sounds
• Ringing in ears
• Decreased sensitivity to temperature
• Problems swallowing
• Vertigo
• Fatigue
• Muscle weakness
• Nausea
• Burning sensation in extremities
• Slurred speech
• Problems with Depth Perception

The list could go on as there are many more.

Article and Walk

I'd like to share a link to an article written by myself and my friend Allen. Please take the time to click and read. If you have a facebook or other site, please share it.

Living with Chiari

Me at the ChiariPeople of Pa walk September 18th, 2010



A group of walkers getting ready for the start.

(Photo credit for this one goes to Renee Tobias)

What is Chiari Life?

Chiari Life...

For starters my name is Alicia. I'm 23 years old and this is my life with Chiari Malformation and Syringomyelia. Never heard of them?

Chiari (key-r-e) Malformation (CM) - is a serious neurological disorder where the bottom part of the brain, the cerebellum, descends out of the skull toward the spinal cord, putting pressure on the brain, skull, and spine and causing many symptoms.

Syringomyelia (sear-IN-go-my-EEL-ya) (SM) - is a chronic disorder involving the spinal cord. The condition occurs when cerebrospinal fluid (normally found outside of the spinal cord and brain) enters the interior of the spinal cord, forming a cavity known as a syrinx. This syrinx often expands and elongates over time, destroying the center of the spinal cord. As the nerve fibers inside the spinal cord are damaged, a wide variety of symptoms can occur, depending upon the size and location of the syrinx.

More in my next post on symptoms and such.

Info sited from myself as well as:

www.asap.org
www.conquerchiari.org 

UPDATE: 02/18/15
Chiari-Life started as an outlet for me to vent frustrations, thoughts, and well... raise awareness. But really just a place I could type what I was thinking as it came up. Then I started a Facebook page not long after realizing there are a lot of other people who want to get the same frustrations and thoughts out. The same people also have questions and things they want to talk about. We have odd habits and symptoms unique to us. But it turns out with each new story and experience we are able to provide support, education, and awareness for Chiari Malformation.
I do my best to check the validity of the sources on any links I share on any of my pages. I read them and post them if I feel they are worth sharing for support, education, and awareness. Or even just a laugh. If I miss something or it turns out to be false I will look into it. 

I have Chiari Malformation and Syringomyelia and this is my Chiari-Life.

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