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Expressive Writings

The Origin of the “WTF!” Name

Published: 1 May 2024
Written by Michelle Cole
No comments
Categories: Expressive Writings, Faith Through The Fire, Faith-based, Mental Health Resources, Testimonials, WorthTheFight

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[3]. 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 CSF[9] Leaks cmtt_Idiopathic[4] Intracranial Hypertension[2] (IIH[10])" data-mobile-support="0" data-gt-translate-attributes='[{"attribute":"data-cmtooltip", "format":"html"}]' tabindex='0' role='link'>pseudomeningocele[1] (leak) with an SP shunt[7] (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 OTC[11])" data-mobile-support="0" data-gt-translate-attributes='[{"attribute":"data-cmtooltip", "format":"html"}]' tabindex='0' role='link'>Tylenol[8]. 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[5] pain conditions (such as Ehlers-Danlos, Chiari Malformation, and the other comorbids[6]) 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[12]/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!

Terms definitions
1. ↑ pseudomeningocele. An abnormal collection of cerebrospinal fluid (CSF) that forms a pocket inside the cranium, just outside of the dura. Generally occurs as a complication of duraplasty (a common part of a Chiari Decompression surgery). While a small amount of fluid getting through the dura patch is normal after surgery, the body should absorb it and it should resolve within the first month or two. If it fails to reduce in size and resolve, that is a good indication that there is a cranial dura leak exists. A pseudomeningocele are most common amongst patients with an underlying connective tissue disorder (such as Ehlers-Danlos Syndromes) as their dural tissue is more fragile than that of the general population, they are more likely to have problems with the adherence of the patch, and they are more likely to have other comorbid conditions that can further complicate the healing process (such as Intracranial Hypertension, where the untreated high pressure can actually cause a cranial leak). Since the pseudomeningocele is inside the cranium, it can cause a "mass effect" that can raise intracranial pressure.
2. ↑ Hypertension ( Hypertension ) High blood pressure.  It is relatively normal to have high blood pressure from time to time.  It is when there is long-term force of high blood pressure against your artery walls that you need to be concerned.  Long-term high pressure can cause damage to the blood vessels and lead to heart attack, heart disease and stroke.  Symptoms of hypertension include headaches, shortness of breath and/or nosebleeds.  Unfortunately by the time these symptoms surface the hypertension may have reached a severe or life-threatening stage.  Fortunately, it is easily detected and if found quickly there are many medical treatments.
3. ↑ depression. A persistent depressed or saddened state in which people may lose interest in activities. Since Chiari Malformation involves the brain and often the pituitary gland (see Empty Sella Syndrome), depression should be looked at from a physiological/neurological point of view and not just a psychological perspective.
4. ↑ Idiopathic ( Idiopathic ) Having unknown causes, spontaneous in origin.
5. ↑ Chronic ( Chronic ) An illness, symptom, or condition that lasts a long duration (sometimes life long) and/or is constantly recurring.

Struggling Through the Holidays

Published: 12 November 2023
Written by Michelle C.
No comments
Categories: Inspirational, To Family/Friends

‘Twas the night before Christmas and despite the sleeping spouse, there was still one stirring in the Chiarian[13]’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!

Terms definitions
1. ↑ pseudomeningocele. An abnormal collection of cerebrospinal fluid (CSF) that forms a pocket inside the cranium, just outside of the dura. Generally occurs as a complication of duraplasty (a common part of a Chiari Decompression surgery). While a small amount of fluid getting through the dura patch is normal after surgery, the body should absorb it and it should resolve within the first month or two. If it fails to reduce in size and resolve, that is a good indication that there is a cranial dura leak exists. A pseudomeningocele are most common amongst patients with an underlying connective tissue disorder (such as Ehlers-Danlos Syndromes) as their dural tissue is more fragile than that of the general population, they are more likely to have problems with the adherence of the patch, and they are more likely to have other comorbid conditions that can further complicate the healing process (such as Intracranial Hypertension, where the untreated high pressure can actually cause a cranial leak). Since the pseudomeningocele is inside the cranium, it can cause a "mass effect" that can raise intracranial pressure.
2. ↑ Hypertension ( Hypertension ) High blood pressure.  It is relatively normal to have high blood pressure from time to time.  It is when there is long-term force of high blood pressure against your artery walls that you need to be concerned.  Long-term high pressure can cause damage to the blood vessels and lead to heart attack, heart disease and stroke.  Symptoms of hypertension include headaches, shortness of breath and/or nosebleeds.  Unfortunately by the time these symptoms surface the hypertension may have reached a severe or life-threatening stage.  Fortunately, it is easily detected and if found quickly there are many medical treatments.
3. ↑ depression. A persistent depressed or saddened state in which people may lose interest in activities. Since Chiari Malformation involves the brain and often the pituitary gland (see Empty Sella Syndrome), depression should be looked at from a physiological/neurological point of view and not just a psychological perspective.
4. ↑ Idiopathic ( Idiopathic ) Having unknown causes, spontaneous in origin.
5. ↑ Chronic ( Chronic ) An illness, symptom, or condition that lasts a long duration (sometimes life long) and/or is constantly recurring.
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September Is Chiari Awareness Month

Published: 16 September 2023
Written by Michelle C.
No comments
Categories: Acquired Chiari Malformation, Expressive Writings, WorthTheFight

It’s hard having a chronic illness that isn’t all that understood.

As patients, we have to fight on absolutely every level!

Before diagnoses, we fight for someone to hear us when:

  • We explain to them that our neck is to weak to hold up our head.
  • We’re trying to hold our heads up with our hands when laying back isn’t an option.
  • Our necks start spasming to the point that we feel like we’ve been internally decapitated.
  • We have to ride in the front seat to try and minimize the car sickness.
  • We suddenly can’t balance to walk.
  • Our eyes start twitching beyond what could ever be considered normal.
  • We aren’t able to do what we could just a short time ago, or even a few hours ago.
  • That we want to scream and cry because of the pain, but we know it will only make it worse.
  • We go to say something and can’t find the right word because it just isn’t in our memory bank at that moment.
  • We spontaneously can’t read because we have double vision, blurred vision, or our eyes wont stop jerking around to focus, yet an hour later we’re fine.
  • We explain that doctors not knowing what’s wrong doesn’t mean that nothing is wrong (even when they say nothing is wrong).

Around diagnoses, we fight to:

  • Process the magnitude of what we’re facing.
  • Learn all we can so we’re prepared for the important decisions before us.
  • Find the right doctors who are knowledgeable and trained in our condition(s).
  • Fight to be stoic when we know that it’s not just our bodies enduring all of this – something is breaking in our souls and we’re fighting to not let it change us for the worse.

When our doctors continue to dismiss our symptoms, we need our friends and families to understand:

  • That we’re still the same wife/husband, mother/father, sister/brother, aunt/uncle, and/or friend that you’ve known and loved for all these years, and we need you now more than ever!
  • That decompression is not a cure! In fact it typically fails to relieve symptoms over the long term nearly 50% of the time when pathological[14] conditions aren’t treated beforehand.

Terms definitions
1. ↑ pseudomeningocele. An abnormal collection of cerebrospinal fluid (CSF) that forms a pocket inside the cranium, just outside of the dura. Generally occurs as a complication of duraplasty (a common part of a Chiari Decompression surgery). While a small amount of fluid getting through the dura patch is normal after surgery, the body should absorb it and it should resolve within the first month or two. If it fails to reduce in size and resolve, that is a good indication that there is a cranial dura leak exists. A pseudomeningocele are most common amongst patients with an underlying connective tissue disorder (such as Ehlers-Danlos Syndromes) as their dural tissue is more fragile than that of the general population, they are more likely to have problems with the adherence of the patch, and they are more likely to have other comorbid conditions that can further complicate the healing process (such as Intracranial Hypertension, where the untreated high pressure can actually cause a cranial leak). Since the pseudomeningocele is inside the cranium, it can cause a "mass effect" that can raise intracranial pressure.
2. ↑ Hypertension ( Hypertension ) High blood pressure.  It is relatively normal to have high blood pressure from time to time.  It is when there is long-term force of high blood pressure against your artery walls that you need to be concerned.  Long-term high pressure can cause damage to the blood vessels and lead to heart attack, heart disease and stroke.  Symptoms of hypertension include headaches, shortness of breath and/or nosebleeds.  Unfortunately by the time these symptoms surface the hypertension may have reached a severe or life-threatening stage.  Fortunately, it is easily detected and if found quickly there are many medical treatments.
3. ↑ depression. A persistent depressed or saddened state in which people may lose interest in activities. Since Chiari Malformation involves the brain and often the pituitary gland (see Empty Sella Syndrome), depression should be looked at from a physiological/neurological point of view and not just a psychological perspective.
4. ↑ Idiopathic ( Idiopathic ) Having unknown causes, spontaneous in origin.
5. ↑ Chronic ( Chronic ) An illness, symptom, or condition that lasts a long duration (sometimes life long) and/or is constantly recurring.

Christmas Presence

Published: 25 December 2022
Written by Michelle Cole
No comments
Categories: Expressive Writings, Inspirational, To Family/Friends

Making homemade stockings and cutting flowers for wreaths.

Baking treats and devouring them with hot cocoa by the tree that we spent hours decorating.

Shopping for just the right gifts and wrapping them meticulously, so those I love know just how special they are.

I remember all the traditions that we did together as a family before my symptoms hit hard.

Now, I am reduced to shopping the internet for gifts, but still, I do the best I can to find something special.

I usually start out trying to help decorate, just to end up on the couch watching everyone do what I can no longer do.

I sit here and watch despite the pain I feel from the few decorations I put on the tree because I so want to stay a part of things as much as I can, while I can, even if it’s nothing more than a shadow of what I once was.

Do they know how much I still long to be a part of it all? How much I long to be a part of them?

I sit here and as I ponder how much things have changed and all that I am now, I find myself stuck in my head.

Do they see how stuck I am?

Do they see how afraid I am, that each holiday might be the last that I have with them, and they have with me?

I’ve got to get out of my head and be present.

The best present that I can give them really is just me, fully engaged in showing them that they’re the best that has ever happened to me!

Terms definitions
1. ↑ pseudomeningocele. An abnormal collection of cerebrospinal fluid (CSF) that forms a pocket inside the cranium, just outside of the dura. Generally occurs as a complication of duraplasty (a common part of a Chiari Decompression surgery). While a small amount of fluid getting through the dura patch is normal after surgery, the body should absorb it and it should resolve within the first month or two. If it fails to reduce in size and resolve, that is a good indication that there is a cranial dura leak exists. A pseudomeningocele are most common amongst patients with an underlying connective tissue disorder (such as Ehlers-Danlos Syndromes) as their dural tissue is more fragile than that of the general population, they are more likely to have problems with the adherence of the patch, and they are more likely to have other comorbid conditions that can further complicate the healing process (such as Intracranial Hypertension, where the untreated high pressure can actually cause a cranial leak). Since the pseudomeningocele is inside the cranium, it can cause a "mass effect" that can raise intracranial pressure.
2. ↑ Hypertension ( Hypertension ) High blood pressure.  It is relatively normal to have high blood pressure from time to time.  It is when there is long-term force of high blood pressure against your artery walls that you need to be concerned.  Long-term high pressure can cause damage to the blood vessels and lead to heart attack, heart disease and stroke.  Symptoms of hypertension include headaches, shortness of breath and/or nosebleeds.  Unfortunately by the time these symptoms surface the hypertension may have reached a severe or life-threatening stage.  Fortunately, it is easily detected and if found quickly there are many medical treatments.
3. ↑ depression. A persistent depressed or saddened state in which people may lose interest in activities. Since Chiari Malformation involves the brain and often the pituitary gland (see Empty Sella Syndrome), depression should be looked at from a physiological/neurological point of view and not just a psychological perspective.
4. ↑ Idiopathic ( Idiopathic ) Having unknown causes, spontaneous in origin.
5. ↑ Chronic ( Chronic ) An illness, symptom, or condition that lasts a long duration (sometimes life long) and/or is constantly recurring.

Holiday Hug

Published: 21 December 2021
Written by Connie W.
No comments
Categories: Inspirational

The week before Christmas in my home is filled with gift wrapping, cookie baking, dogs barking, people talking (loudly)… On a normal day, we feel the pain in the stiff neck, the backache, the headache, (the list could go on). When we are surrounded by stressors, they can take a toll on a person, especially a chronic pain patient, so it’s important that we “just take a minute” when it’s needed.

Christine Miserandino created a theory called The Spoon Theory as she struggled to explain her chronic pain (from Lupus) to a friend. The theory basically goes like this. Every day we get twelve spoons. Every activity we do uses a spoon or more. For example, a shower may use three spoons, leaving us only nine for the rest of the day. During this time of year, we have to be careful how we use our spoons, so we aren’t trying to borrow spoons from the next day/week, because the old adage is true… what we do today, we pay for tomorrow.

I’m learning to let go of things that I simply can’t do anymore or ask for help when it’s available. If you have family, ask for help and put them to work. Let them wrap the gifts or do the cookies. Allow them to help. I’m not very good at that. I know how I like my stuff done, but I’m learning to be gracious even if it’s not all ‘my way.’ I saw a meme the other day that said, “the first Christmas wasn’t perfect so it’s okay if yours isn’t either.” There are no truer words.

Many of us struggle with sensory overload. We can’t deal with loud noises, flickering lights, crowded places, etc. I have chronic tinnitus[15]. It’s always there. So, when it gets too loud for me – when people are over-talking each other, the TV is blaring, grand-kids are running, and the dogs are barking – I excuse myself and I go to the bathroom and take a few minutes to just ‘be.’ They really will not follow ya to the bathroom, so take your moment and breathe, and allow peace to come in. Do that as many times as you need to. I promise it makes a difference. If you are asked, just say, “Well, I have to do what I got to do,” and let that be that.

I hear many times of families who just aren’t very understanding or supportive. We will not convince them in one visit. Michelle Cole wrote an amazing article called Dear Family. It’s on how to tell families and friends what we need from them. I would encourage all to read that. Should there be that one family member who just starts on how yoga helps or how we aren’t praying enough, whatever their “answer” is for our issues, as much as we would like to come back at them, don’t! It’s not the time, and it’s not worth the spoons, so for their sake and the sake of others there (and for your sanity), just let it go. We know the truth. We know some will never understand no matter what, because honestly unless it happens to them, they can’t know. Enjoy your day no matter the naysayers.

Pace yourselves. Do a little each day. Epsom salts baths are a Godsend for me because they help tired sore muscles and joints. If your body says to ‘lay down,’ listen. Our bodies dictate what we need and we have to be mindful. Remember, stress exacerbates our symptoms. As best you can, try to be as stress-free as possible. I know it’s hard. I really do, but none of us need or want a flare (or to spend the next week in bed). Remember, if you can’t do anything (if you can’t do the first cookie, wrap the first gift, buy the first gift), that is okay too! It really is! Above all, give yourself grace! Oftentimes, we extend grace to others but leave ourselves out. Don’t do that! Give yourself grace and while you’re at it, give yourself a little holiday hug!

I pray we all have the best Christmas, remembering why it’s celebrated in the first place. As the admin of our Chiari Prayer Group, my prayer is “May God bless you and keep you. May The Lord make His face shine upon you and be gracious to you. May the Lord lift up His countenance upon you and give you peace!” (Numbers 6:24-26)

Terms definitions
1. ↑ pseudomeningocele. An abnormal collection of cerebrospinal fluid (CSF) that forms a pocket inside the cranium, just outside of the dura. Generally occurs as a complication of duraplasty (a common part of a Chiari Decompression surgery). While a small amount of fluid getting through the dura patch is normal after surgery, the body should absorb it and it should resolve within the first month or two. If it fails to reduce in size and resolve, that is a good indication that there is a cranial dura leak exists. A pseudomeningocele are most common amongst patients with an underlying connective tissue disorder (such as Ehlers-Danlos Syndromes) as their dural tissue is more fragile than that of the general population, they are more likely to have problems with the adherence of the patch, and they are more likely to have other comorbid conditions that can further complicate the healing process (such as Intracranial Hypertension, where the untreated high pressure can actually cause a cranial leak). Since the pseudomeningocele is inside the cranium, it can cause a "mass effect" that can raise intracranial pressure.
2. ↑ Hypertension ( Hypertension ) High blood pressure.  It is relatively normal to have high blood pressure from time to time.  It is when there is long-term force of high blood pressure against your artery walls that you need to be concerned.  Long-term high pressure can cause damage to the blood vessels and lead to heart attack, heart disease and stroke.  Symptoms of hypertension include headaches, shortness of breath and/or nosebleeds.  Unfortunately by the time these symptoms surface the hypertension may have reached a severe or life-threatening stage.  Fortunately, it is easily detected and if found quickly there are many medical treatments.
3. ↑ depression. A persistent depressed or saddened state in which people may lose interest in activities. Since Chiari Malformation involves the brain and often the pituitary gland (see Empty Sella Syndrome), depression should be looked at from a physiological/neurological point of view and not just a psychological perspective.
4. ↑ Idiopathic ( Idiopathic ) Having unknown causes, spontaneous in origin.
5. ↑ Chronic ( Chronic ) An illness, symptom, or condition that lasts a long duration (sometimes life long) and/or is constantly recurring.

The Prayer of An EDS/Chiari/Comorbid Patient

Published: 21 June 2021
Written by Michelle C.
No comments
Categories: Expressive Writings, Faith-based, Inspirational, Poetry
 
My sister asked me how she could pray for us specifically. Here’s what I’ve come up with.
 
 
 

As we lift up a warrior fighting EDS, Chiari, and/or Comorbids,
We are believing You for:

Knowledgeable doctors/surgeons
With hearts for the patients that are trusting them
Ears to hear them
And a willingness to unlearn and relearn

CSF leaks to seal
Cranial masses to disappear
Narrowed venous structures to widen
And cranial pressures restored to normal

Sticky filums to release
Stretched spinal cords to retract
Conus Medullaris’ to rise
And elongated medullas restored without consequence

Collagen[18] restored without mutation
Intravertebral discs moving back into their rightful place
Laxity issues resolved
Straightened odontoids and clivus[21] bones
And craniums to rise

Spines to straighten
Cerebellar tonsils[16] to rise
CSF flow restored
And syringes[19] (syrinxes) dissipated

Muscles reconditioned
Paralysis[17] reversed
Vision completely restore
Ringing in the ears to cease

Habitual good night’s rests
No insomnia[20], painsomnia, chronic fatigue[22], or narcolepsy
Breathing issues corrected
Restless legs calmed

Nerves decompressed
Even vagus restored
Motility perfected
Inflammation gone
And pain a thing of the past

Depression replaced
Hearts seasoned with grace
Families restored
Where no one’s needs are ignored

Thank You, Father,
That despite all we’ve endured,
Your grace continues to be sufficient.
That none of this has taken You by surprise;
You knew all we’d face, yet You still chose each of us and call us Yours.
Our hope is in You and You alone,
The Author and Perfector of our faith,
We stand on Your promise that You still have a plan for each of us!
We might not know what it is or understand how we’ll get there,
but You are a good Father, and we trust You completely.

In Jesus’ Name, Amen!

(Note: This prayer was written to become a collaborative prayer, that we can add to as needed.)

Terms definitions
1. ↑ pseudomeningocele. An abnormal collection of cerebrospinal fluid (CSF) that forms a pocket inside the cranium, just outside of the dura. Generally occurs as a complication of duraplasty (a common part of a Chiari Decompression surgery). While a small amount of fluid getting through the dura patch is normal after surgery, the body should absorb it and it should resolve within the first month or two. If it fails to reduce in size and resolve, that is a good indication that there is a cranial dura leak exists. A pseudomeningocele are most common amongst patients with an underlying connective tissue disorder (such as Ehlers-Danlos Syndromes) as their dural tissue is more fragile than that of the general population, they are more likely to have problems with the adherence of the patch, and they are more likely to have other comorbid conditions that can further complicate the healing process (such as Intracranial Hypertension, where the untreated high pressure can actually cause a cranial leak). Since the pseudomeningocele is inside the cranium, it can cause a "mass effect" that can raise intracranial pressure.
2. ↑ Hypertension ( Hypertension ) High blood pressure.  It is relatively normal to have high blood pressure from time to time.  It is when there is long-term force of high blood pressure against your artery walls that you need to be concerned.  Long-term high pressure can cause damage to the blood vessels and lead to heart attack, heart disease and stroke.  Symptoms of hypertension include headaches, shortness of breath and/or nosebleeds.  Unfortunately by the time these symptoms surface the hypertension may have reached a severe or life-threatening stage.  Fortunately, it is easily detected and if found quickly there are many medical treatments.
3. ↑ depression. A persistent depressed or saddened state in which people may lose interest in activities. Since Chiari Malformation involves the brain and often the pituitary gland (see Empty Sella Syndrome), depression should be looked at from a physiological/neurological point of view and not just a psychological perspective.
4. ↑ Idiopathic ( Idiopathic ) Having unknown causes, spontaneous in origin.
5. ↑ Chronic ( Chronic ) An illness, symptom, or condition that lasts a long duration (sometimes life long) and/or is constantly recurring.

More Than a Headache – A Warrior’s Poem

Published: 7 November 2019
Written by Lindsey Lewis
1 Comment
Categories: Expressive Writings, Inspirational, Poetry

It started with a headache,
But it didn’t go away.
Soon I would find out
That it was here to stay.

They all say, ‘the sun’s out,
go out and get some air!’
But my wobbly legs ache,
not to mention every strand of my hair.

Every Doctor says, ‘You look just fine!
It must be stress. Just get some rest.
Here’s more meds to try to help,
And we’ll run a bunch of tests.’

As time went on and
the headaches got worse,
No meds would work
This felt like a curse.

I couldn’t work.
I couldn’t clean.
I couldn’t cook.
Still not knowing what this means.

I wouldn’t give up
Until I knew what was wrong.
It’s a Chiari Malformation,
So you must stay strong.

So, I have a malformation
In the back of my head.
There isn’t a cure
So I plead and I plead.

Please take this away
And I promise I’ll be the best.
I want to live my life
Please just run some more tests.

“Brain surgery may help you
But it’s not a guarantee.
We will remove part of your skull
And you should be headache free.”

As I walked into surgery
I felt a sense of peace.
I just knew I would be better
And it put my mind at ease.

Two surgeries later
And my symptoms are still here.
There’s no more options or treatments
And my pain won’t disappear.

My new life is different
And not what I had planned.
I still don’t know my purpose
And I don’t know where I stand.

One day at a time.
That’s all I can endure.
So I’ll keep raising awareness
Until Chiari Malformation has a cure.

Terms definitions
1. ↑ pseudomeningocele. An abnormal collection of cerebrospinal fluid (CSF) that forms a pocket inside the cranium, just outside of the dura. Generally occurs as a complication of duraplasty (a common part of a Chiari Decompression surgery). While a small amount of fluid getting through the dura patch is normal after surgery, the body should absorb it and it should resolve within the first month or two. If it fails to reduce in size and resolve, that is a good indication that there is a cranial dura leak exists. A pseudomeningocele are most common amongst patients with an underlying connective tissue disorder (such as Ehlers-Danlos Syndromes) as their dural tissue is more fragile than that of the general population, they are more likely to have problems with the adherence of the patch, and they are more likely to have other comorbid conditions that can further complicate the healing process (such as Intracranial Hypertension, where the untreated high pressure can actually cause a cranial leak). Since the pseudomeningocele is inside the cranium, it can cause a "mass effect" that can raise intracranial pressure.
2. ↑ Hypertension ( Hypertension ) High blood pressure.  It is relatively normal to have high blood pressure from time to time.  It is when there is long-term force of high blood pressure against your artery walls that you need to be concerned.  Long-term high pressure can cause damage to the blood vessels and lead to heart attack, heart disease and stroke.  Symptoms of hypertension include headaches, shortness of breath and/or nosebleeds.  Unfortunately by the time these symptoms surface the hypertension may have reached a severe or life-threatening stage.  Fortunately, it is easily detected and if found quickly there are many medical treatments.
3. ↑ depression. A persistent depressed or saddened state in which people may lose interest in activities. Since Chiari Malformation involves the brain and often the pituitary gland (see Empty Sella Syndrome), depression should be looked at from a physiological/neurological point of view and not just a psychological perspective.
4. ↑ Idiopathic ( Idiopathic ) Having unknown causes, spontaneous in origin.
5. ↑ Chronic ( Chronic ) An illness, symptom, or condition that lasts a long duration (sometimes life long) and/or is constantly recurring.

A Mother’s Story

Published: 11 June 2019
Written by Anonymous Author
3 Comments
Categories: Acquired Chiari Malformation, Atlantoaxial Instability, Comorbidities, Craniocervical Instability, Dysautonomia, Ehlers-Danlos Syndromes, Etiological Co-Factors, Expressive Writings, Heritable Disorders of Connective Tissue, Inspirational, Syringomyelia

Spring is in the air, yet I struggle to appreciate its presence. My daughters are at school, my son is at home in bed yet again. Like so many other days he is unable to get up. My son is 19 years old and looks just like any other 19 year old. You would never guess that this 19 year old is fighting a tremendously unfair battle every single day and has done so for several years.

Let me rewind.

My son was around 9 years old when he first complained of a lack of feeling on his right side and regular headaches. Doctors in Ireland, where we were living at the time, told him to drink more fluids after his daily soccer practice and put the numbness down to a trapped nerve. When he was 14 years old and living in Canada, he was told exactly the same by doctors there. However, when I finally insisted on him being referred to a neurologist[31], this very neurologist laughed at my son for wasting his time. He was told that it was all in his head. I vividly remember telling him off myself in the carpark on our way home.

I also remember being disappointed about his worsening school reports, blaming the onset of teenage years for his inability to concentrate and retain information. Blurred vision was also dismissed when his eye test came back just fine. Doctors didn’t grow concerned until he was 16 years old and living in France when a routine soccer medical check-up showed a sudden scoliosis[32] deterioration from 8 degrees to 40 degrees. Subsequent MRIs showed Chiari Malformation (CM) with extensive Syringomyelia[28].

Neurosurgeons[29] were quick to reassure him that all should be fine after a decompression surgery[24]. Nevertheless, I spent hours researching these unknown rare conditions and found two experienced neurosurgeons, one in England and one in Belgium, for second opinions. Whereas surgeons in France took a more traditional approach and talked about inserting a shunt, both these surgeons warned strongly against this and so we made the decision to go to Belgium for the surgery. We felt well informed and were full of hope when my son embarked on his healing process 3 years ago.

Let me tell you where we are now.

Doctors in Europe tell us that my son is one of the unlucky few as his health has drastically deteriorated. Scar tissue has attached itself to his brain tonsils but that only explains part of his deteriorated health. So I embarked on a mission to get to the bottom of these problems. Surely there was hope to be found in the health system in France, one of the best in the world! After countless appointments with multiple health professionals, we were dumbfounded by the complete lack of understanding, knowledge and pure arrogance in relation to CM and its associated conditions, which resulted in my son’s mental health being questioned yet again.

I started carrying out my own research, which clarified the distinct link between brain disorders and compromised immune/digestive systems. Whereas his doctors are reluctant to make that link, the evidence is clear. 18 months after surgery, my son got struck down by glandular fever. Again, we were hopeful that this would only be a temporary setback. Today however, my son suffers from chronic fatigue syndrome as well as Autoimmune[33] Disorder cmtt_Doctors" data-mobile-support="0" data-gt-translate-attributes='[{"attribute":"data-cmtooltip", "format":"html"}]' tabindex='0' role='link'>dysautonomia[30].

At our wits end last summer, we turned to a hospital in the United States that specialized in Chiari Malformation. Our first consultation with its Managing Director turned out to be an eye opener. This neurosurgeon could literally finish our sentences. My son was finally understood. It turns out that doctors in Europe had failed to diagnose another condition, Ehlers-Danlos Syndrome (EDS), which caused Connective Tissue[27] cmtt_Ehlers-Danlos Syndromes cmtt_Craniocervical Instability / Atlantoaxial Instability[25] cmtt_Etiological Co-factors[26] of CM" data-mobile-support="0" data-gt-translate-attributes='[{"attribute":"data-cmtooltip", "format":"html"}]' tabindex='0' role='link'>craniocervical instability[23]. This in itself can be a debilitating condition but the combination of craniocervical instability with brain decompression surgery can be a death sentence. He further explained that such patients are deemed to benefit from Occipitocervical Fixation (OC) Fusion[36] surgery. However, this surgery has not yet received the green light for these conditions from Health Services in Europe.

Armed with a diagnosis of Complex Chiari, we faithfully returned to my son’s French doctors, only to be met, yet again, by a lack of understanding. My request for an upright flexion[37]/extension[34] MRI[38] was seen as outlandish and peculiar. Turns out, an upright MRI is not yet available in France. Instead they still rely on flexion/extension X-ray images which fail to adequately detect craniocervical instability.

In recent discussions, our son’s Belgian neurosurgeon cautiously recognizes the link between CM and EDS. However, as these studies are in their infancy in Europe, doctors still carry out decompression surgeries without checking for EDS. He also questions the durability of an OC Fusion but agrees that much more extensive research needs to be carried out in Europe and that my son is extremely unfortunate this hasn’t happened yet.

So where does this leave my son? In the land of limbo. Knowing that Europe is trailing some 10 years behind the States in this field. France, with its inherent reluctance to change, probably closer to 15 years. School is no longer an option for my son as his brain fog[35] and memory loss have become more and more of a problem, his fatigue too debilitating and his headaches too frequent.

We are tired of fighting the system, tired from having to spell out the name of his conditions to health professionals, tired of being misunderstood. There are days I avoid going out as I don’t want to answer people’s well-meant questions. There are days I am ashamed of the anger that wells up inside me when friends air their worries about their children’s school results. There are days I feel like I am being punched in the stomach when I see his friends play a soccer match. People tell me I am strong. I don’t agree. I wish I had been strong all those years ago and believed my son over his doctors.

My son is my hero. My son is a fighter. My son has generally done what health professionals told him to do, taken every medication health professionals told him to take, followed the advice health professionals told him to take, yet the system continues to let him down. When I look into my son’s eyes, I still see this steadfast determination but I now also see pain and disillusionment. My son believed me when I told him we would overcome this together. My son believed me when I told him the worst would be over soon. My son doesn’t believe me anymore. I feel that I have failed him.

Complex Chiari diagnosed so late is a life sentence. It has brought pain, sadness and isolation, not only to my son but to my entire family. My husband and I are learning to compartmentalize, enjoy moments. We live in hope that our son’s better periods will begin to lengthen and pick ourselves up every time these come to an abrupt end. We have to. We owe it, not only to our son but to our daughters too.

We continue our journey through the unknown, thankful for the sources of information coming from the United States, usually met with skepticism and resistance by French health professionals. However, one thing I have learned from our journey so far is that we cannot fight these conditions and health services alone. Surely there must be more people out there in Europe. Surely, as a group we can start making a difference. Let’s unite! Let’s educate! Let’s raise awareness! Our children deserve so much better! Our children deserve to be heard, supported, and at the very least, understood!

Terms definitions
1. ↑ pseudomeningocele. An abnormal collection of cerebrospinal fluid (CSF) that forms a pocket inside the cranium, just outside of the dura. Generally occurs as a complication of duraplasty (a common part of a Chiari Decompression surgery). While a small amount of fluid getting through the dura patch is normal after surgery, the body should absorb it and it should resolve within the first month or two. If it fails to reduce in size and resolve, that is a good indication that there is a cranial dura leak exists. A pseudomeningocele are most common amongst patients with an underlying connective tissue disorder (such as Ehlers-Danlos Syndromes) as their dural tissue is more fragile than that of the general population, they are more likely to have problems with the adherence of the patch, and they are more likely to have other comorbid conditions that can further complicate the healing process (such as Intracranial Hypertension, where the untreated high pressure can actually cause a cranial leak). Since the pseudomeningocele is inside the cranium, it can cause a "mass effect" that can raise intracranial pressure.
2. ↑ Hypertension ( Hypertension ) High blood pressure.  It is relatively normal to have high blood pressure from time to time.  It is when there is long-term force of high blood pressure against your artery walls that you need to be concerned.  Long-term high pressure can cause damage to the blood vessels and lead to heart attack, heart disease and stroke.  Symptoms of hypertension include headaches, shortness of breath and/or nosebleeds.  Unfortunately by the time these symptoms surface the hypertension may have reached a severe or life-threatening stage.  Fortunately, it is easily detected and if found quickly there are many medical treatments.
3. ↑ depression. A persistent depressed or saddened state in which people may lose interest in activities. Since Chiari Malformation involves the brain and often the pituitary gland (see Empty Sella Syndrome), depression should be looked at from a physiological/neurological point of view and not just a psychological perspective.
4. ↑ Idiopathic ( Idiopathic ) Having unknown causes, spontaneous in origin.
5. ↑ Chronic ( Chronic ) An illness, symptom, or condition that lasts a long duration (sometimes life long) and/or is constantly recurring.
Read More

When A Chiari Woman Passes Away

Published: 21 February 2019
Written by Michelle Cole
1 Comment
Categories: Expressive Writings, The Fight of a Chiari Angel, To Family/Friends

When a Chiari woman passes away it changes so much for so many.

It leaves a hole in the hearts of the Chiari community because, even as dysfunctional as we are sometimes, we know we’re all in this together!

  • We know what it’s like to have conditions that so few understand, including our doctors.
  • We know how humiliating it is to watch our bodies change and our muscles deteriorate as we fight just to hold up our heads, even for just a few hours a day.
  • We know what it’s like to have our symptoms and pain consistently dismissed as psychosomatic.
  • We know what it’s like for doctors to say how easy the surgery will be only to find out that they had no clue of what they were talking about.
  • We know the heartbreak we feel when those we love the most choose to believe our doctors instead of us.
  • We know what it’s like to be told that the surgery cured us, while everything in our heads and necks seemingly rebel in disagreement.
  • We know what it’s like to have to fight for every aspect of our treatment, from imaging to specialist, and still have help denied to us.
  • We know what it’s like to have to find strength through the pain each day and still try and carry on the best that we can for those that we love so much. We long more than anything to get back to who and what we once were. To run and jump and enjoy life with those we love most, but the pain is too overwhelming. The truth is that those times that we did try left us in even more pain; so, we are forced to learn to choose what we do wisely.
  • We know the genetic[40] nature of what we have, even if our doctors don’t, and we all long to figure it all out and fix this very broken medical system that relies on information that is centuries old, before our children and their children are forced to face what we face.
  • We know what it’s like to live in fear of leaving all those we love, as they are our reason for living.

It leaves a hole in the hearts of her family that should be respected.

To them she is so much more than a Chiari Woman, she is my wife, my mother, my daughter, my grandma, my sister, my aunt, and the love of my life.

Chiari didn’t just rob their loved one, it’s robbed the entire family for years.

They too have longed for what was and often cried behind closed doors for all that likely would never again be.

Her husband has had days where he was so petrified at the thought of losing her. Sometimes that fear manifested as anger and frustration, but it wasn’t her that he was really mad at; He was mad at the Chiari that was taking his wife from him. He regretted those words from the very minute that he gazed upon her eyes as she heard them. He couldn’t make her forget those words, they pierced her soul too deeply, so he internally committed to just try and show her why he loves her. Despite his frustrations with the situation, he admired this amazingly strong woman who was facing more pain than he could ever understand. He’s cried out to God privately for this soul mate that he committed to so many years ago. He feared losing her and he did not know how he could ever hold everything together like she did, but he had to try because there was so much was on his shoulders. He never talked much about the weight he carried in it all, because he knew what she was facing was already more than she could handle. So, he learned to grieve as silently as he could – to understand what he could, to empathize as he could, to remain as strong for her and the family as best as he could.

Her children have learned to grieve in silence as well. They learned to face life and all the obstacles they faced without making waves at home. How could they? They saw the pain that flared when things had stressed her in the past. They didn’t want to cause that again. They longed having the mom that they used to have, the mom with the strength to climb every mountain with them, the mom that made every challenge in life seem conquerable. They admired her strength and never understood how they could admire so much in her yet hate the fact that she wasn’t always there for them anymore. Even when she so desperately tried to be there the brain fog often dominated and took over the conversation entirely, this conversation that she probably wouldn’t remember for long. They resented her for it but knew that it wasn’t her fault. Like everyone else that loved her the most, they said so many things that they regretted. They knew that they often came across like they hated her, but the real truth was there was no one in the world that they longed for more. They’ve always hated seeing her in pain, yet her pain served as a constant reminder of the future that they feared in their future. They remember when she told them about the hereditary[39] nature of the genes passed on to them, with tears in her eyes. Would they have what she had? Would they become as symptomatic? Would they have the courage to fight it as valiantly as she did? Should they have children one day? The reasons for concern were endless.

Depending on when she became symptomatic, her parents have likely spent endless days and nights in hospitals and emergency rooms. They’ve spent years learning all they could and even learned to recite her diagnoses with detailed explanations because they’d became so accustomed to these conditions that so few doctors could pronounce, much less treat. For years they made sure to always have her complete medical chart in hand with official documentation, in case they were challenged by a medical professional or anyone dared to call their daughter “a drug seeker” or “psychosomatic.” They spent countless hours trying to dull the tortuous pain they saw her go through, and spent many more hours researching creative home remedies to give her a sense of relief, even if it was only momentary. There were times they prayed for God to just go ahead and take her, so she wouldn’t be in anymore pain; and then felt guilty for even thinking it. Then one day the screaming stopped, the pain was gone, but with it so went their daughter.

As Chiarians, we all deal with thoughts of death more than “normal” people and “normal” families. We go from surgery to surgery knowing that this might be the surgery that ends our fight altogether, yet we hold on to hope that it will be the surgery that helps us to be all that we’ve yearned to be once again. Our community has found strength in our unity. As we remember those we’ve lost and face our fears about our morbidity, let us continue to unite to change this for us and our future generations that we love so much.

*This article is dedicated to all the Chiari Angels and their families, as well as those that are still fighting the fight. Hold your families close; forgive quickly and as often as necessary. We never know how much time we have and we usually never really know how much we’re truly loved until it’s too late.

**Note: This article was not to leave out all of our valiant Chiari brothers fighting the fight, it was just easier to write from one point of view.

Terms definitions
1. ↑ pseudomeningocele. An abnormal collection of cerebrospinal fluid (CSF) that forms a pocket inside the cranium, just outside of the dura. Generally occurs as a complication of duraplasty (a common part of a Chiari Decompression surgery). While a small amount of fluid getting through the dura patch is normal after surgery, the body should absorb it and it should resolve within the first month or two. If it fails to reduce in size and resolve, that is a good indication that there is a cranial dura leak exists. A pseudomeningocele are most common amongst patients with an underlying connective tissue disorder (such as Ehlers-Danlos Syndromes) as their dural tissue is more fragile than that of the general population, they are more likely to have problems with the adherence of the patch, and they are more likely to have other comorbid conditions that can further complicate the healing process (such as Intracranial Hypertension, where the untreated high pressure can actually cause a cranial leak). Since the pseudomeningocele is inside the cranium, it can cause a "mass effect" that can raise intracranial pressure.
2. ↑ Hypertension ( Hypertension ) High blood pressure.  It is relatively normal to have high blood pressure from time to time.  It is when there is long-term force of high blood pressure against your artery walls that you need to be concerned.  Long-term high pressure can cause damage to the blood vessels and lead to heart attack, heart disease and stroke.  Symptoms of hypertension include headaches, shortness of breath and/or nosebleeds.  Unfortunately by the time these symptoms surface the hypertension may have reached a severe or life-threatening stage.  Fortunately, it is easily detected and if found quickly there are many medical treatments.
3. ↑ depression. A persistent depressed or saddened state in which people may lose interest in activities. Since Chiari Malformation involves the brain and often the pituitary gland (see Empty Sella Syndrome), depression should be looked at from a physiological/neurological point of view and not just a psychological perspective.
4. ↑ Idiopathic ( Idiopathic ) Having unknown causes, spontaneous in origin.
5. ↑ Chronic ( Chronic ) An illness, symptom, or condition that lasts a long duration (sometimes life long) and/or is constantly recurring.
Read More

My Husband, My Caretaker, My Hero

Published: 14 February 2019
Written by Michelle Cole
No comments
Categories: Expressive Writings, Inspirational, To Family/Friends

Like any marriage, we’ve had our rocky moments. We’ve both showed our ugly sides more than we like to admit. I’m not sure when he changed, but somehow along the way in our 27 years of marriage, my husband morphed into this amazing man who is EXACTLY what I need in every way!

My husband doesn’t have the same responsibilities that most husbands have. He works full-time to provide for his family and does more than his fair share of household chores. But my husband has a wife with several chronic conditions. He has a wife that has been in some level of pain almost every day for over 18 years! He’s seen me through ten surgeries since we’ve been married, eight of them being in a five-year period. That is enough to exhaust the strongest of men, but exhausted or not he has stood by my side through all of it.

I first became symptomatic following a car accident. We were both 29 with three young kids (ages 2, 5 and 8). I was initially diagnosed with double whiplash, but when that failed to get better, I was left with no reason for why I couldn’t hold up my head. It felt like my neck lacked the strength to hold up my head for more than an hour at a time and on some days, not even that. To add insult to injury, I went without a diagnosis for over a decade. It couldn’t have been easy to stay by my side when all the doctors were saying that they couldn’t find anything wrong with me.

Over our decade without answers, I continued to decline. I started having severe cognitive[43] decline and memory loss. I’d have periods of time where I lost my ability to walk and use fine motor skills[42][41] (so I couldn’t write or pick up small things). He helped me walk to my classes and even helped me do my homework when I couldn’t write. He didn’t have the answers, but he knew that I desperately needed them, and he was determined to stay by my side even though by doing so it was putting an unfair burden on him. He didn’t have the help-meet that he needed in life. He just had this sick, scared wife, with no means to any end to her suffering.

When I was finally diagnosed, the choice for decompression was an easy one. It was 2010 and I was now 39 years old. I had lost 10 years and the possibility of getting my life back and engaging as a wife and mother again was something that I couldn’t pass up. We never expected this “easy surgery” to take the turn that it did. We knew that there was a chance that it would be unsuccessful at relieving all of my symptoms, but never in a million years did we think that decompression would open Pandora’s Box on my need for surgeries. From 2012-2015 I needed seven additional surgeries. Each surgery had its own recovery and complications. And with each additional surgery, I became increasingly dependent on my husband for help, but not once did he complain. This was affecting his life too, but not once did he concentrate on that. Not once did he think of it as being unfair to him to have to care for me, even though it really was. I’m now covered with scars on my left side from my neck to my groin, one night he raised my pajama shirt and gazed intensely upon them. He started kissing them. When he got to the scars covering my stomach, I pushed him away and with tears in my eyes, I told him that I wasn’t comfortable with him touching me there. He looked me in the eyes and told me that he didn’t see me the way that I see myself. He said that when he sees my scars, he’s reminded of all that I’ve had to fight through and what a strong woman he’s married to. “I wish that you could see yourself the way that I see you,” he exclaimed. All my insecurities just melted with his words of affirmation.

This man who vowed to love me for better or worse, richer or poorer, in sickness or in health, really meant it, and those vows were continually put to the test every day of his life. And he wasn’t seeing the polished-up version of me that others tend to see. He saw the frustrated me, the defeated me, the hopeless me. The me that went from one pair of pajamas to another. The me that gained over a hundred pounds on nerve meds that ultimately made me worse. The me that started to stutter and slur and hated myself for it. The me that drooled in front of people and whose nose ran uncontrollably when I sat down to eat. The me that lost control of both her bladder and bowels and that had to wear a diaper for years. The me that no longer could wipe herself or shower without his help. The me that took so much of my pain and frustrations out on him, when he’d take all of it upon himself in an instant if he could save me from it. Not only does he not complain or criticize, but he became my biggest cheerleader in life!

He listened to me as I read studies to increase my knowledge on what I’m facing. He lets me yell to him about the incompetency of doctors. He’d make small jokes to help me make light of the seriousness at hand. When he forgot things, he’d say that he was having a “Chiari moment.” I’d remind him that he wasn’t the one with Chiari and he insisted that it was sympathy pains. When he developed a herniated cervical[44] disc and we looked at his MRIs together, the first words that came out of his mouth were, “well, I don’t have a Chiari Malformation,” as he pointed at the cerebellar tonsils. I often feel so unworthy of his love, yet if you talked to him, he’d tell you how unworthy he is of my love.

There’s no denying his real role in my life; he’s my hero!

*This article is dedicated to my husband, Johnny (my hero and the love of my life) and to all the other couples trying to hold a marriage together through this crazy fight we face.  

Terms definitions
1. ↑ pseudomeningocele. An abnormal collection of cerebrospinal fluid (CSF) that forms a pocket inside the cranium, just outside of the dura. Generally occurs as a complication of duraplasty (a common part of a Chiari Decompression surgery). While a small amount of fluid getting through the dura patch is normal after surgery, the body should absorb it and it should resolve within the first month or two. If it fails to reduce in size and resolve, that is a good indication that there is a cranial dura leak exists. A pseudomeningocele are most common amongst patients with an underlying connective tissue disorder (such as Ehlers-Danlos Syndromes) as their dural tissue is more fragile than that of the general population, they are more likely to have problems with the adherence of the patch, and they are more likely to have other comorbid conditions that can further complicate the healing process (such as Intracranial Hypertension, where the untreated high pressure can actually cause a cranial leak). Since the pseudomeningocele is inside the cranium, it can cause a "mass effect" that can raise intracranial pressure.
2. ↑ Hypertension ( Hypertension ) High blood pressure.  It is relatively normal to have high blood pressure from time to time.  It is when there is long-term force of high blood pressure against your artery walls that you need to be concerned.  Long-term high pressure can cause damage to the blood vessels and lead to heart attack, heart disease and stroke.  Symptoms of hypertension include headaches, shortness of breath and/or nosebleeds.  Unfortunately by the time these symptoms surface the hypertension may have reached a severe or life-threatening stage.  Fortunately, it is easily detected and if found quickly there are many medical treatments.
3. ↑ depression. A persistent depressed or saddened state in which people may lose interest in activities. Since Chiari Malformation involves the brain and often the pituitary gland (see Empty Sella Syndrome), depression should be looked at from a physiological/neurological point of view and not just a psychological perspective.
4. ↑ Idiopathic ( Idiopathic ) Having unknown causes, spontaneous in origin.
5. ↑ Chronic ( Chronic ) An illness, symptom, or condition that lasts a long duration (sometimes life long) and/or is constantly recurring.
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