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Science and Technology




Exploradio: Engineering a Chiari breakthrough
Engineers in Akron are developing the new science of neuro-hydrodynamics to better understand a rare and painful brain disorder
by WKSU's JEFF ST. CLAIR
This story is part of a special series.


Reporter / Host
Jeff St. Clair
 
Executive Director Frank Loth (left) and Director Bryn Martin (right) are founders of the Conquer Chiari Research Center at the University of Akron. The center uses mechanical engineering models to understand the dynamics of cerebrospinal fluid.
Courtesy of Jeff St.Clair
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A pair of mechanical engineers at the University of Akron is studying the mechanics of the human body to help fight a rare brain disease.

In this week’s Exploradio, WKSU’s Jeff St.Clair takes us inside the new Chiari Research Center.

Exploradio: Engineering a Chiari breakthrough

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Fear of sneezing
Growing up, Audra Beers had a fear of sneezing. Every sneeze and cough brought blinding pain.  Beers thought what was happening to her was normal. It wasn’t until she was 37 that an unrelated sports injury led to an MRI, and the discovery of what was causing her lifetime of headaches, numbness, and painful sneezes. Every symptom, from the headaches to the neck pain suddenly made sense.  She says “every single symptom I had was Chiari related."  After decades undiagnosed, she finally knew what was causing her wide ranging maladies, and although it meant brain surgery, Beers was elated to finally know what was wrong with her.

She remains frustrated that the many doctors she saw over the years had never put the symptoms together under the name Chiari.  She realized she wasn't "crazy" and,"that it truly was the Chiari that was causing all my issues.” Two surgeries later she has partial paralysis in her left side and continuing pain, but also peace of mind.

Building a better diagnosis
It’s estimated that 1 in 1000 people in the US have Chiari malformation.  It’s named after Hans Chiari, a 19th century Austrian doctor who first described the disease.  Chiari is caused by a slight malformation at the base of the skull that allows the hind-brain to slip down into the spinal column.  This herniation, as it’s called, blocks the flow of spinal fluid, and causes terrible headaches that start in the back of the head.  About 300,000 Americans are estimated to have Chiari, and many don’t even know they have it.

That got Rick Labuda working to improve the diagnosis of this mysterious condition.  Labuda is head of the Conquer Chiari Foundation based in Pittsburgh.  He has Chiari, AND he’s an electrical engineer.  The combination gave him an idea. He says the conditions of Chiari, a skull that’s not large enough, and a brain that herniates and blocks the flow of fluid from the brain to the spine, "screams out for an engineering analysis and an engineering approach.” And that’s why Labuda and his foundation invested close to half a million dollars this year to set-up the Conquer Chiari Research Center at the University of Akron, run by mechanical engineers Frank Loth and Bryn Martin.

Engineering a fluid flow model for Chiari
In the new lab, director Bryn Martin demonstrates his model of the human spine, complete with flowing cerebrospinal fluid, my finger acting as the Chiari blockage. He's developing tools to measure the 1cc flow of cerebrospinal fluid that pulses in and out of the skull with every heartbeat, but the simulated blockage creates a jagged readout on the colored graph that measures the rhythm.  

Engineering professor Frank Loth is also part of the team.  He says as the plastic spine model is refined, data from MRI images from living patients begin to make more sense, and the two are combined to build an accurate understanding of fluid dynamics inside the spine. Loth says combining the information from the model and patient MRI's helps them, "arrive at the true result."  Loth says,"we’re not going to cut somebody open and do pressure measurements inside somebody’s body, we’re not going to do that.”

Bridging the creativity gap
Surgeons, for now, rely on intuition and experience to treat Chiari patients.  But the engineers at Akron’s new Chiari research center are helping that effort by building a mechanical model of the disease based on anatomy and fluid dynamics in a new approach Martin calls neurohydrodynamics.  Engineers, says Loth, "bring to the table a critical thinking methodology that’s different than the neurosurgeons."  He and Martin have launched a multi-disciplinary attack to conquer Chiari.  They’ve enlisted a psychologist to study cognitive effects of the disease, and a molecular biologist to tackle questions of the chemistry inside the spine.

Martin says, as pioneers in this field, the center's main engineering challenge is putting enough imagination into creative problem solving.  He says having time to test each idea, “is the barrier, not the technical aspects."  By combining creativity and engineering Martin's immediate goal is to develop better diagnostic tools for clinicians hoping to one day conquer Chiari.

(Click image for larger view.)


Related Links & Resources
Bryn Martin's music web page

Listener Comments:

I co-ordinate a walk for Conquer Chiari. This organization and now Research Center are amazing and supportive. Thank you for doing research on something that before 6 years ago, I knew nothing about. Had seizures as a toddler, headaches, tinnitus, light-headed feeling, blurred vision, and pressure behind my eyes. I was diagnosed with Chronic Sinusitis in Spring of 2008 and then Chiari in Fall of 2008. I was decompressed and had a removal of my C1 ring in Feb 2009. I would be happy to speak with anyone about my journey, symptoms, etc. to help further research!! I can't travel out to Akron though. Sorry!


Posted by: Diana Casavecchia (Worcester, MA) on March 11, 2014 12:03PM
30 MM herniation here,and how can I sign up to be a guinea pig? Or have my csf flow charted?


Posted by: April Ellis (United States) on March 7, 2014 5:03AM
Suffered for years! Looking back it was preteen when the headaches started. Wasn't till 2000. with my family Dr. we got it figured out! Surgery in Jan 01 !!! So many issues answered finally! Also what's weird is we all seem to have other major birth defects! Wish Dr.s would stop telling us we're crazy


Posted by: Cindy (knoxville TN.) on March 5, 2014 8:03AM
acm 1/hydro~ Decompressed age 32. Life long battle with not being believed. Pain beyond what words can express, Mind, body and soul. After my decompression I was told that I should not have this severe pain, There for little help with pain relief. Anyone with chiari knows this despair. Just to be treated as a human that matters.Thank you for giving us hope. For pioneering a path for our chiari sister and brothers to come. May they never have to endure pain as we do today. Because these studies will reveal the scientific truth of this suffering. May they have a cure. Until then I just pray they are simply believed!! You are hero's!!!!!! God Bless you!


Posted by: Angie Culp (Lakeville MN.) on December 31, 2013 3:12AM
I have been diagnosed with Arnold Chiari 1, I wonder if you know about the surgical technique section of the terminal filament iventada by Dr. Royo, it really is effective and whether it is worth risking, performing the technique that was indicated by institute and because the doctors think the Brazil institute Chiari Spain and malfeasance?


Posted by: Cristine (Brazil) on July 28, 2013 8:07AM
I have syringomyelia/chiari and quickly had to educate myself on the condition. Since chiari is a structural problem and engineer's approach is obvious! Thanks for jumping right in and giving us hope! I have NOT been decompressed, so far I can manage, but it would be nice to know there are options out there that will have been well-researched!


Posted by: Robin Roderick (Bakersfield, CA) on July 28, 2013 2:07AM
BTW... I am not able to hear the broadcast here on the page, nor are either of the downloads working. Just thought you should be aware!


Posted by: Lori Ratterman (OH) on March 6, 2013 6:03AM
BTW... I couldn't hear the broadcast on this page, nor would either download work. I just thought you should be aware!


Posted by: Lori Ratterman (OH) on March 6, 2013 6:03AM
I have read all of the posts above and our stories, though they may differ slightly, are for the most part the same. Many years of no diagnosis, then diagnosis, but in some cases, such as mine, the diagnosis is blown off - even by the neuro community - then finally a doc who knows what's going on and tries to treat it. But with me, as many others, it was too little too late.

I was decompressed in 2010 (at age 48) and received minimal relief from the surgery. I have permanent nerve damage as a result of years of compression and restricted spinal flow. Today I must rely on a walker to assist me due to the nerve damage and balance issues. I am still plagued by all the other ugly symptoms of Chiari, as well as other rare disorders/diseases.

I am so happy to see something moving forward with Chiari research that is not completely "surgery" driven. Doctors have used their "best guess scenarios" for whether or not we need surgical intervention, and I, personally, think they have been way off base when I hear other people's stories.

It will be a restricted spring for us here, but I am hoping I can find a way to get to the Open House. I submit myself to you for studies, if needed and if I can get back and forth, as I don't really drive anymore (especially not that far, as I am near Columbus).

Thank you, Rick at Conquer Chiari and thank you Frank and Bryn for all of the thought and heart you are putting into this! I am praying that this is a breakthrough for the younger people who are more recently diagnosed and those individuals that will be diagnosed in the years to come!

Thoughts and prayers are with you!!!


Posted by: Lori Ratterman (OH) on March 6, 2013 6:03AM
Thank you. Your research makes perfect sense and gives us all so much hope. Our recenlty turned 8 yr old son has had two operations for a 23mm herniation and still lives in daily pain, although the debilitating headahces were ameliorated to a large degree after the first surgery. As others say, he lives with it. We will help and support your efforts in any way. Thank you, Regina (MSEd Counseling


Posted by: Regina VS (East Quogue. NY) on March 6, 2013 1:03AM
Diagnosed by Radiologist with Drs. Hill


Posted by: Linda (Medina, Ohio) on March 5, 2013 11:03AM
I was diagnosed with Chiari 1 Malformation with Syringomyelia caused by the pulsating blockage. Decompressed early 2011 with VP shunt. Symptoms almost all disappeared dizziness, vertigo, pulsating debilitating headache when bending or laughing, neck pains, eye problems, ear and sinus problems. Some are returning but not severely at present. When diagnosed it was a blessing and a curse as no one else seemed to have it. Felt isolated until I joined the Facebook support pages. They are a godsend and full of experienced individuals who help and support. I would suggest you go take a visit to these sites as there is much you can learn from the sufferers themselves. Good luck with your research and I pray that you find a cure.


Posted by: Kaz (England UK) on March 5, 2013 10:03AM
My whole life, I have had major headaches. When I see people laugh, I would wonder, "doesn 't that hurt their head?" Iwasn 't diagnosed till I was 35. Since then, I have had a TBI and now, every joint in my body hurts. Now, all I hear is, Chiari wouldn 't be causing all your pain. I need a change. I am 50 now and so fed up, yet I have to still move along like nothing is wrong. I am just.....tired.
Thank you for the help you will be providing the children diagnosed early. They won 't have to live the way many of us have. :)


Posted by: Denise (Waterbury) on March 5, 2013 9:03AM
Our daughter, Amber has Chiari 1.5. She had decompression surgery at age 10. She is 16 now, a Junior in High School and is 7th in her class. Her surgery was the best success possible. When diagnosed in 2005, we had 3 places to choose from to do the surgery. Texas, NY and Duke. We live near Duke, so it was done there.

We are on a local facebook page of Chiarians. I read about symptoms and periodically ask Amber about them. She says yes, I have that, but it passes. The one that concerns me most sometimes is the band of pain around her chest where she has to wait to take a breath. This one freaks me out on the inside.

She lives with Chiari. Surgery relieved the headache immediately. But the syrnixs left nerve damage in her legs. She will never be able to hold a job where she stands or walks a lot. It's also hard to find a lifestyle exercise.

In closing, I talked to our pediatrician about it seems the earlier the surgery the best the people are. The older you are, if there was a reset button on the brain after surgery to reset the loop of symptoms and pain that the brain is stuck in.

Thank you for studying the symptoms. Hopes that you will find a way to correct those too!! It's the daily living with Chiari that can be the battle.


Posted by: Arliss Ferrell (Zebulon, NC) on March 5, 2013 8:03AM
I have two daughters with Chiari. One has had seven surgeries for Chiari and its related disorders. My youngest has not had surgery yet but has Chiari 0, Syringomyelia and tethered cord. They both have Ehlers Danlos Syndrome. I'm beyond thrilled with any research and hope it will include EDS.


Posted by: Kelly Hain (Salisbury , NC) on March 5, 2013 6:03AM
Thank you for trying to help us!


Posted by: Anonymous on March 5, 2013 4:03AM
My daughter had decompression surgery in 2010. She has Chairi 1 and scoliosis. She is amazing and only 11 years old.
I am so happy to see research for this medical condition.


Posted by: Michelle (Hawaii) on March 5, 2013 1:03AM
I am very glad to see my Alma Mata working on an issue near and dear to me. I was diagnoses in Feb. 2011 and have had two brain surgeries to attempt to elevate symptoms since with minimal success. Maybe a few Zips can find some answers for us zipperheads.
Ken Owensby
U of A, 1980


Posted by: Ken Owensby (Canton, GA) on March 4, 2013 12:03PM
I am very glad to see my Alma Mata working on an issue near and dear to me. I was diagnoses in Feb. 2011 and have had two brain surgeries to attempt to elevate symptoms since with minimal success. Maybe a few Zips can find some answers for us zipperheads.
Ken Owensby
University of Akron, 1980
Canton, GA


Posted by: Anonymous on March 4, 2013 12:03PM
Thank you so much for looking in to this more and doing your research. I also have chiari i had surgery 11yrs ago and still have alot of problems and have them saying they did surgery nothing else they can do.I also get botox injections to try and calm my neck muscles down and all over my head for the headaches! plz let me know if you learn anything else. thank you!


Posted by: Brenda Fields (lebanon oregon) on March 4, 2013 12:03PM
Thank you!! Amazing work that you guys are doing. For a Chiari patient, this is a giant step in the right direction! I have Chiari, was diagnosed July 1, 2003 and decompressed 8/29/03 but still having a lot of pain


Posted by: Belinda Walters (Erie, Pa) on March 4, 2013 11:03AM
This is wonderful news...keep up research and awareness. I am 10 years postop and have issues off and on. I am excited that this awful disease is finally get some acknowledgment and research. Thank you.


Posted by: judy marshall (bostin ma) on March 4, 2013 11:03AM
Awesome that they are looking at this from a different angle! Hopefully it will lead to a "cure" or some kind of non-surgical treatment.
Thank you to all for your hard work and investment in my future!
R.Wewer 7mm herniation, not decompressed.


Posted by: Rebecca Wewer (Theresa, NY) on March 4, 2013 11:03AM
Great news for all of us hopefully leading to a quick diagnosis for everyone fighting for an answer. Together we will win this battle thru research, awareness and refusal to stop until the fight is won. Thank you for this research from all of us Chiari Warriors!!!!!


Posted by: K Mason (Thunder Bay, Canada) on March 4, 2013 11:03AM
I enjoy reading and learning more and more about Chiari. I have Chiari Malformation type 2 and I've had two surgeries so far and I almost died from menengitis. I am proud to say that I'm winning this battle even tho I suffer with aches and pain everyday. Thanks for all ur team is doing.


Posted by: Sue Deyo (Niagara Falls, New York) on March 4, 2013 11:03AM
I am OVERLY THRILLED to see that someone is finally looking into helping those with Chiari. It blows my mind, how many neurologist have dismissed my Chiari as its affects on the entire body. I won't go into the misdiagnosis and other related "wrong information" related to Chiari that I have been given in the past by Neurologist. I will say that I have 2 GREAT neurosurgeons! One in Augusta, GA and one in Atlanta, GA. Thanks for all you are doing. Too many children (and adults) have died from misdiagnosis and/or Chiari being "dismissed" by neurologist. I try and post everyday to facebook and twitter to Help Raise Chiari Awareness. THANK YOU, THANK YOU, THANK YOU!!!! Now we need to get someone to look into improving the 50% failure rate of shunts. (I also have Arnold's Chiari/Hydrocephalus that I believe is from Chiari not being diganosed soon enough. I believe the pressure caused on the brain from Chiari damaged my aquaducts which led to the CSF problem. I was not correctly diagnosed until 48 years old............... THANK YOU AGAIN!


Posted by: Donna Caldwell (Augusta, GA) on March 4, 2013 10:03AM
I enjoyed listening to this broadcast. Our 2.5 yr old granddaughter has been diagnosed with Chiari and we are so frightened. She had an MRI this past friday and now we are awaiting results. This broadcast gave me some hope....thank you so very much.

A very concerned Nana....


Posted by: Vickie (Nova Scotia) on March 4, 2013 10:03AM
thank you for doing research in this condition. my daughter has just been diagnosed by an opthamologist after yrs of being treated as a psych patient. your research represents a ray of hope in this vast sea of stupidity in the medical community. now here's hoping i can find someone to help my child, we are medicaid patients in indiana, it's like a third world country here.


Posted by: sandy friday (indiana) on March 4, 2013 10:03AM
My grandson has Chiari; he was diagnosed around age 1. Thank you for the research and the possibilities that it presents for us.


Posted by: Lola (Oklahoma) on March 4, 2013 10:03AM
Amazing research, I am a Clinical Psychologist with Chiari and know all about cognitive issues associated with it. I suffered from severe headaches thru my teens up until my surgery in 2004 at the age of 34. I also had vertigo, balance issues and could not lay flat on my back without being overtaken by severe dizziness until I turned my head to the side. I now have a neurostimulator implanted in my chest with electrodes that run up along my occipital nerve on the right side, to help deal with residual pain from the decomprression surgery. I am all for research and anything that will help diagnose and treat chiari in the future.


Posted by: Kristy Helm (Colorado Springs) on March 4, 2013 10:03AM
I was told I have Chairi 1 malformation 3 mo.ago Nov.2012 I'm 49 years old ! My so called neurosurgeon said" if I have the surgery I'll DIE " so I guess I'm stuck with all the severe symptoms headaches leg pain dizziness blurred vision and so on !


Posted by: lisa (calif.) on March 4, 2013 10:03AM
Hi, I am so happy to hear this, I have Chiari and have had surgery. I have remaining pressure issues and due to have Lumbar to determine CSF pressure. I would love to participate if you need people for your research.

Share Your research on the "Doctor Show" and news! Get the word out. I was a Nurse for 20 years and had no idea what Chiari was when I was Diagnosed.
Sincerely, and thank you!

Joanne McQuinn


Posted by: Joanne McQuinn (New Brunswick Canada) on March 4, 2013 10:03AM
Thank you for investigating this very underdiagnosed condition. I have been a RN for 33 years and never learned about this until it hit my family. My daughter has significant syringomyelia related to Chiari and I would love to see more research about syringomyelia as well. Thank you!


Posted by: Kathy Sullivan (Easton PA) on March 4, 2013 10:03AM
I am diagnosed Chiari malformation. I suffer from severe headaches in the back of my at least two ti three times daily. I also suffer from vertigo. I have been followed by an Ent Nuerosurgeon who says I have fluid in my vestibular organ. Siffer from severe dizzy spells, have lost my balance several time and fallen. Thank God I hve strong bones. Since my vertigo has worsen my Ent specualist conferred with my OrthoNuerosurgeon. The agreed I have surgery to repair the right side vestibular (I suffer with both right


Posted by: Gloria M. Hernandez (San Antonio, Tx) on March 4, 2013 10:03AM
13 years of migraines, falling, stumbling like I had just came out of a bar, when people look at me I just say it my brain got to much of it. Then when you go to the Drs they look at you the same way...like you just came out of the bar...
decompression 2000


Posted by: Lisa Miracle (Knoxville, TN) on March 4, 2013 9:03AM
I was first diagnosed with chiari in 2005


Posted by: Sherry Zechman (Winfield, PA) on March 4, 2013 8:03AM
I do NOT have Chiari, but I have many friends who do, and I have seen them go through so many doctors who really don't even know what Chiari is, or how to treat it! My friends have gone through so much pain, frustration and expense just trying to find a doctor who understands and will help them, that is soooo wrong! I know your research and raising more awareness will be an added benefit to all the Chiari and related conditions family! Thank you so much for all your efforts, please keep them up, they are so appreciated!


Posted by: Kathie Fierro (Cypress, CA) on March 4, 2013 7:03AM
Thank you, I have been fighting Chiari since 2003 and still no where I have now been diagnosed with Tarlov cysts disease that no one seems to know about either, I feel like my spine is falling apart, so THANK YOU FOR ALL YOU DO....Tammy


Posted by: Tammy S (NC) on March 4, 2013 7:03AM
I am from Springfield,OH ( farmers daughter)and in 1988 I had my chiari surgery. MRI was quite new then and I was only 38 and Army wife with 2 small children. I am 61 and soon too be 62 and I still have problems and never been to a real Chiari doctor. I use exercise to stay strong and yoga for balance...my son was in Easter Seals and I know about using different sports to help myself,but still I hurt,sometimes. Anything you find out about this disease is great! caring is so important


Posted by: Deborah Luten (Fort Worth,TX) on March 4, 2013 6:03AM
So happy to read this! I have a 10mm Chiari and it has taken over 5 years to finally figure out all of my crazy little symptoms. I still have not had surgery and am trying to put it off as long as possible as I am not debilitated by it at this point. Maybe, I will be fortunate enough to benefit from your research! Blessings to you all in your efforts to conquer chiari.


Posted by: Tracy (Roanoke, VA) on March 4, 2013 4:03AM
So exciting to see Engineers working on ways to better determine flow studies and aiding physicians to understand how surgery could correct many problems. So glad funds have been put to good use. May answers be found sooner than later. Thank you


Posted by: Jan Grizzel (Murrayville) on March 4, 2013 4:03AM
My chiari was diagnosed /activated after a neck injury due to an auto mobile accident. Im very interested in following your research and I would like to attend your Research open house. Thank you.


Posted by: Kelly R (Columbus,Ohio) on March 4, 2013 3:03AM
Dear all,

We are really happy to see you comments and interest in our research on Chiari. It is very motivating. The Conquer Chiari Research Center will be hosting a research open-house this spring 2013 at University of Akron. We would like to meet you all and get ideas for our next research studies. We may also conduct some research when you come! Details/dates will be posted on the CCRC facebook page soon: https://www.facebook.com/chiariresearch


Posted by: Bryn Martin (Akron, OH) on March 4, 2013 1:03AM
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