Oropharyngeal dysphagia = when your upper esophageal sphincter, pharynx, larynx, and/or tongue fail to coordinate properly when trying to swallow.

Can occur when one or more of the following nerves is damaged or compressed: facial nerve (CN VII), glossopharyngeal nerve (CN IX), vagus nerve (CN X), and hypoglossal nerve (CN XII).

Now that you know it’s a thing… ask your doctor for a swallow test to confirm it.


Some names have no meaning and some names mean absolutely everything to and about the bearer of the name. Our name falls into the latter category. Despite the more popular acronym, WTF! stands for Worth The Fight!

The origins of our name began with someone that I love to the moon and back, who was struggling with depression. This person was cutting themselves and trying to mask their pain with drugs and alcohol, and attempted suicide before I realized what was going on with them.

Life isn’t easy for a Chiari family. From the moment that I was told that my head and neck pain wasn’t just pain, but something wrong with my brain, everything in our family changed. Everything became centered on me.

“Don’t stress mom out.” “Let mom rest.” “Can’t you see how much pain she’s in?”

Surgery came just weeks after diagnosis for me. It was in hopes that I could become the wife and mother that I once was, the wife and mother that my family so desperately needed me to be. Two years after decompression, I had a revision to fix a pseudomeningocele (leak) with an SP shunt (Subgaleo-peritoneal). It was about a month after this second brain surgery that I realized that there was much more going on in my house than I’d ever dreamed.

It was just after 2 am when there was a bone-chilling pounding on our front door. It was the kind of pounding that would awaken even the heaviest of sleepers – the kind of pounding that you’d never forget. My husband and I rushed to the front room, greeted by siren lights and multiple people shining flashlights into our windows. It was a firetruck, an ambulance, and the police. We opened the door and one of the officers informed us that they had reason to believe that our daughter had attempted suicide. Words could never express the feelings that I had as I ran desperately to her room unsure about what I’d find when I opened the door. She was alive, but incoherent and unaware of her surroundings. The officer intervened to assess her condition, asking if she was able to get up and come out of her room to talk. The one officer talked to her and another two pulled us aside to talk to us, as the paramedics stood by. Everything was surreal. How could I concentrate on hearing and answering questions when I didn’t even know if our daughter was going to live or die? The officer explained that she had called a friend after taking pills with wine or champagne. The friend told his mom and together they called the police while he continued talking with her. She had initially told this friend that she was in a park across town, so the police had been scouring the park looking for an overdosed teenage girl, and when they couldn’t find her, they pinged her cell phone which led them to our home just in the nick of time. My emotions raced. How could this be when she had come to our room earlier that night, looking tired, telling us how much she loved us, and that she was going to bed? (We should have known that something was wrong, but again, I had been so lost in my own world that I couldn’t see all that my children were going through at the time.) After assessing our daughter, the attempt was deemed “credible and in immediate need of emergency care,” and she was transported by ambulance to the county hospital emergency room.

My husband and I followed in our car. At the hospital, we were informed that she had taken multiple doses of my husband’s blood pressure medications and multiple doses of my opioids. The doctors said that the first concern was her heart, “if” she survived through the night. The next concern would be liver toxicity since the opioids all contained Tylenol. And that if she survived and made it through those steps and deemed stable, she would be held on a 5150 (Involuntary Psychiatric Hold). While we prayed at her side her blood pressure dropped down to the lower 50s/20s. We called for the doctor and they told us that there was nothing more they could do (it was too late to try to pump her stomach), she would either survive the night or wouldn’t. They told us to try to keep her awake, so we walked laps around the ER every single time her blood pressure dropped in an attempt to keep her awake. I don’t know how I held up my head that night, I was running on pure adrenaline at the thought of losing my only daughter. She survived the night and while we still had to wait for the toxicity reports on the liver tests, they allowed us to walk with her over to the Psychiatric Department of the hospital.

After a twenty-four-hour evaluation, our daughter was moved to a San Francisco hospital for a week-long intensive therapy program. We couldn’t visit her for the first few days. We were limited to scheduled phone conversations. At first, she just wanted us to go get her. It’s incredibly hard as a parent to be in a position where you legally cannot just take your child home. But we knew she needed help beyond what we could offer, and eventually, she realized that she needed that too.

Over the week, she worked on herself and we worked on creating a safer environment for her to come home to (they actually have a checklist when something like this happens involving a teen). I won’t go into all the details of how we tried to safeguard our home and family after realizing that Chiari hadn’t simply set out to steal just from me physically, but its attack extended to our entire family in every way. But there was a website that I happened by that really caught my attention.

I happened upon a story “To Write Love On Her Arms” by Jamie Tworkowski. It’s a story of a group of friends learning how to fiercely love a friend struggling with depression, addiction, self-injury, and suicide. They would write the word “LOVE” on her arms; the same arms that she had been carving the words, “FUCK UP” on. They figured that if she went to cut her arms again, she’d be reminded how greatly loved she really was.

Chronic pain conditions (such as Ehlers-Danlos, Chiari Malformation, and the other comorbids) can take a toll on us and how we think, how we see our future and the value that we see us having in this world. As we see ourselves become increasingly dependent on our family members, we see the burden that it places on them, and it hurts. We know that they say that we’re ‘not a burden,’ but we see it. When we hear those that we love, deny that a burden exists, we know they’re just saying that because they love us. “It’s nothing,” they tell us. IT’S NOT NOTHING! IT’S EVERYTHING! BECAUSE THEY MEAN EVERYTHING TO US! Perhaps it would be healthier to say that ‘we’re worth the burden,’ instead. No mother can deny that having a newborn baby is a burden of love. It’s absolutely exhausting, but we know that despite the burden, no matter how hard it gets, that little baby in our weary arms is absolutely worth the work! (Just like my daughter and all that she went through, there’s nothing that I wouldn’t have given to see her through it. She was worth it!” And as I continued with my fight, I realized that I was too and if we were going to fight to win this battle, we had to have very real conversations about my fight. My family had to be allowed [encouraged even] to admit that they get exhausted without fear of hurting me or offending me. It enabled us as a family to put the blame on my conditions so that it was Chiari that has robbed us, not me. It had robbed all of us, and we weren’t going to play games and put it on anything or anyone else. We were going to fight back as a family. So if anyone has a problem with our name or our acronym, I’m perfectly okay with letting that be THEIR PROBLEM.

If you have a family member struggling with EDS/Chiari/Comorbids, whatever, you’re going to have to strengthen one another. WE HAVE TO STOP DENYING THE MAGNITUDE OF THE FIGHT, acknowledge it (every part of it), and fight back as a family, where every single person in that family KNOWS (beyond a shadow of a doubt) that they’re WORTHY! That even if we as a family must go to the ends of the earth together, it’s worth it, because each of us is WORTH THE FIGHT! And if someone forgets, write it on their arm to remind them!


This article is dedicated to my daughter, MyKaella, who taught me what it means to live knowing that we’re WTF! I’m so proud of the woman you’ve become and the woman that you helped me to become!


‘Twas the night before Christmas and despite the sleeping spouse, there was still one stirring in the Chiarian’s house. The stockings were hung by the chimney with care as she hoped despite the pain, she’d be able to be there. The family was nestled all snug in their beds, while fear of disappointment danced through her head.


While everyone’s talking about holiday cheer and how there’s laughter in the air, for the chronic pain patient it’s not that easy to get into the holiday spirit. We remember the happier holidays of the past and all that people want to see in us, but there are so many thoughts acting as obstacles in our path.

Will I have the spoons (energy) that I need to make it through the day?
We speak of energy in terms of spoons (The Spoon Theory, by Christine Miserandino). We know what it was like to have normal levels of energy to accomplish tasks and how much more energy every task requires now that our bodies went crazy. You don’t appreciate the energy it takes to get ready for something until you need a nap after every shower you take.

What will I do if I experience a pain flare and how will everyone else respond to me if I do?
Almost worse than the pain itself is living in fear of the pain, especially when we know how it seems to ruin everything for everyone, not just us. For the patient and their family, they know far too well how pain can ruin even the most important of occasions. And for the patient, we know the look on the faces of those we love when we have to cancel or depart early. It’s one thing to see those faces a time or two in a lifetime, but it’s a lot harder when it happens time and time again, and there’s nothing you can do about it.

Will I be able to engage?
People rarely realize how much time we really spend alone (or at least alone in our thoughts). We think about so many things. Should I tell them about what I’m facing? Should I answer how I’m really feeling, or just say, “I’m fine”? Am I talking too much about my conditions? Is it just me and my brain, or is it them? Are my feelings about this even rational? Am I losing my mind? Most of these thoughts are actually healthy thoughts, but when we second guess engaging with the world and live in constant fear of offending, it becomes detrimental to the way we see our value on this earth.

How many days of pain will I experience after the holiday is over?
We’ve learned from those times that we’ve tried to “push through the pain,” that this will be a factor nearly 100% of the time. While the healthier us could push through the pain, that often backfires when it comes to chronic pain. After a few hours of festivities (no matter how light the festivities seem to be), our nervous systems usually respond to the stress with inflammation and pain (which can last several days or even weeks).

Will I live up to what’s expected of me or am I going to let down everyone I love, yet again?
Even when nobody around us expects much from us, there’s always a part of us that still longs to be like our former selves – to have the strength and energy that we once had. The truth is, despite everything we’ve been through, we want to be more for those that we love. Our lives were forever altered and reconciling that with a lifetime of dreams isn’t easy. We’re not feeling sorry for ourselves, we’re mourning and trying to adapt to the reality of all that we face. It hasn’t been easy on our families either, they’re in mourning too. Chiari/comorbids have stolen hopes and dreams from all of us, but we don’t have to let it dominate us. We can figure it all out together and be a stronger family for it!

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Neurosurgeons on this list are ones that have focused much of their practice on Chiari Malformation and Comorbid Conditions. Not everybody will agree with who is on this list and that’s okay. While we do encourage members to share THEIR OWN EXPERIENCES WITH THEIR DOCTORS, we DO NOT ALLOW DOCTOR BASHING in our groups! The doctors that have concerns (some of which are serious/major concerns), amongst patients in our group/site, we have marked with a (!) after their name. It might be worth asking in the group for those that have had negative experiences to share with you about what happened through private message.


ADULTS:

Dr. Petra Klinge – Rhode Island, USA
https://brownneurosurgery.com/our-team/petra-klinge-md-phd/
593 Eddy Street, APC 6, Providence RI, 02903; Ph. 1(401)793-9139 or 1(401)793 9166
Specializes in Tethered Cord and Occult Tethered Cord. *No remote consultations.

Dr. Fraser Henderson – Maryland, USA
http://metropolitanneurosurgery.org/practice/henderson.html
Spine Team Maryland 8116 Good Luck Road, Suite 205 Lanham, MD 20706; Ph. 1(301)654-9390
Specializes in Problems of the Craniocervical Junction (CCI/AAI/BI). Does craniocervical fusions. Insurance might be an issue. *No remote consultations.

Dr. Paolo A. Bolognese (!) – New York, USA
https://nspc.com/physician/paolo-bolognese/
Chiari Neurosurgical Center at NSPC 1991 Marcus Avenue, Suite 108 Lake Success, NY 11042
Ph. 1(516)321-2586; email pbolognese@chiarinsc.com
Specializes in Complex Chiari & Problems of the Craniocervical Junction (CCI/AAI/BI). Does craniocervical fusions. *Known to do video consults for $300. To initiate consultation for 2nd opinion, contact
Jeffrey.Wood@snch.org.

Dr. Gerald Grant – North Carolina, USA
https://med.stanford.edu/profiles/gerald-grant
Duke Children’s Health Center Neurosurgery Clinic, 2301 Erwin Rd, Durham, NC 27710-4699
Ph. 1(919)668-8557 or 1(919)684-5013
Chief of NS. Specializes in Pediatric NS > Chiari & Fusions.

Dr. Anthony L. Capocelli (!) – Arkansas, USA
http://www.orthoarkansas.com/capocelli.php
Ortho Arkansas – Orthopedics & Sports Medicine 10301 Kanis Rd. Little Rock, AR 72205
Ph. 1(501) 604-6900 (800) 264-5633
Neurosurgeon specializing in Chiari. Does craniocervical fusions.

Dr. Dan S. Heffez (!) – Wisconsin, USA
https://www.heffezchiari.com/
Private Practice Milwaukee, WI
Ph. 1(414)955-7188
Neurosurgeon claiming to specialize in Chiari.

Dr. Holly Gilmer (!) – Michigan, USA
https://www2.mhsi.us/doctors/holly-gilmer
Michigan Head and Spine Institute 29275 Northwestern Hwy., Suite 100, Southfield, MI, 48034
Ph. 1(248)784-3667
Neurosurgeon claiming to specialize in Chiari.


PEDIATRICS:

Dr. Douglas L. Brockmeyer – Utah, USA
https://healthcare.utah.edu/fad/mddetail.php?physicianID=u0034828
The University of Utah Health 50 North Medical Drive, Salt Lake City, UT 84132
Ph: 1(801)581-2121 douglas.brockmeyer@hsc.utah.edu
Specializes in Pediatric NS > Chiari & Fusions.

Dr. Richard C. Anderson – New Jersey, USA
https://www.valleyhealth.com/doctors/richard-c-anderson-md
Valley Hospital Health System 1200 East Ridgewood Ave Suite 200, Ridgewood, NJ 07450 Ph: 1(201)327-8600, 1(212)305-0219, Joanna (nurse) 1(973)758-3616 Rca24@cumc.columbia.eds
Specializes in Pediatric NS > Chiari (not sure about fusions).

Dr. Jeffrey Greenfield (!) – New York, USA
https://weillcornell.org/jpgreenfield
Weill Cornell Brain & Spine Center 1305 York Avenue, 9th Floor New York, NY 10021
Ph. 1(212) 746-2363
Specializes in Pediatric NS (but does take adults) > Chiari, some comorbids, does not do fusions, but contracts them out to another surgeon. Known to do remote online for $300 and phone consults for $500.


OTHER SPECIALTIES:

Dr. Wouter Schievink: LEAK SPECIALIST (NS) – California, USA
https://www.cedars-sinai.edu/Patients/Programs-and-Services/Neurosurgery/Centers-and-Programs/Cerebrospinal-Fluid-Leak/
Cedars-Sinai Advanced Health Sciences Pavilion, 127 South San Vicente Blvd. Suite A6600 Los Angeles, CA 90048
Ph. 1(310)423-3277 Wouter.schievink@cshs.org
Neurosurgeon who specializes in leaks. Known to review MRIs for free in patients with low pressure symptoms.

Dr. Ian Carroll: SPINAL LEAKS (EBP, Anesthesia, PM) – California, USA
Stanford 430 Broadway St., Pavilion C, RM 462; MC 6343, Redwood City, California 94063
Ph. 1(650)721-7286 (office) ic38@stanford.edu
Not a neurosurgeon, but his daughter had an Acquired Chiari secondary to a spinal leak, and therefore is VERY PASSIONATE about trying to find leaks in patients dx’d with Chiari if they have low pressure symptoms.

Dr. Kenneth C. Liu: VASCULAR NS – Michigan, USA
https://www.bronsonhealth.com/doctors/kenneth-liu/
Bronson Neuroscience Center – Kalamazoo 601 John St., Suite M-124 Kalamazoo, MI 49007
Ph. 1(269) 341-7500 kenneth.c.liu.md@gmail.com
Specializes in Neuroendovascular Surgery, Venous Hypertension, Intracranial Hypertension


RETIRED/NO LONGER TAKING PATIENTS

Dr. John Oró
https://auroramed.com/service/ccc
Colorado Chiari Institute – The Medical Center of Aurora 1501 S. Potomac Street Aurora, CO 80012
Ph. 1(303)695-2663 ChiariCare@HealthONEcares.com
RETIRED AS SURGEON, but oversees Colorado Chiari Institute

Dr. Faheem A. Sandhu
https://www.medstarhealth.org/doctor/dr-faheem-akram-sandhu-md/
MedStar Georgetown University Hospital – Neurosurgery 10401 Hospital Drive, Suite 101 Clinton, MD 20735
Ph. 1(301) 856-2323
NO LONGER ACCEPTING EDS PATIENTS

Voting is now closed.