Exercising With Chiari 1 Malformation

Exercising With Chiari 1 Malformation

I often refer to my short life time as, pre Chiari life and post Chiari life. The things I used to do and the things that I can no longer do. And I say that I can no longer do, because of the physical limitations I have now since my Chiari + Syringomyelia – a congenital diagnosis. It’s baffling to know how much a diagnosis can be the result of so many life changes. The most simple things can now take so much effort and energy – not to mention can bring on some unwanted physical pain.

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My pre Chiari life, the married life, the stay at home mom life with kids included in particular enjoying lots of the outdoors. My days consisted of going outside daily. I especially loved to run, so I would get the littlest ones in the stroller while the rest peddled beside me in their tiny bicycles. We had a daily schedule that included the outdoors, after breakfast we went outside with the ball and spent sometime breathing in some fresh air and after lunch, right before their nap time, I’d get us all ready so that this mama could get a nice jog. So, simple, so refreshing, something the children really looked forward to.

My life post Chiari includes a lot of doctors appointments – from regularly visiting the neurologist and primary, to regular MRI’s to CT Scans, medications – most on trial run to ‘see’ if they help with the pain, what pain you ask, back pain, neck pain, head pain, anything from vertigo to headaches, imbalance and sensitivity to light from the sun to headlights, just to name a few.  My weight with all this going on has – understandably has been fluctuating and now being at the heaviest. Aside from the obvious and that is the pregnancies I’ve had, Chiari isn’t much help in this area either.

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When it comes to exercising, Chiari can really feel like it’s holding me back. I know what you may think and I’m really trying not to be ‘Negative Nancy’ but, with the physical pain I have, it’s hard to get outdoors. My goal is to lose the weight but not break my back in the process – literally.

Here are some helpful tips I’ve found while researching safe ways to exercising while having Chiari Malformation.

  • First and foremost speak to your doctor. The doctor can provide an exercise program to get you started and give you the OK to begin.
  • If you’ve been through Physical Therapy, do you remember the exercises you would do with your therapist? They test you to know how well you can bend, walk around, balance, reach, check your heart rate while you’re active, all these go hand in hand with the exercising that you should and should not be doing.
  • Choose an exercise based on the symptoms and extent of the malformation.
  • The right exercise can ease the stress on the neck.
  • There are low impact exercises that you can try such as walking, swimming and pilates
  • Walking, be sure you’re wearing comfortable walking shoes.
  • Pilates, strengthens your core, abs, obliques and lower back, it helps keep your body balanced and stable. It keeps the spine stable and safe. This one is recommended by the department of neurology at the hospital where I was operated for Syringomyelia but they also specialize in Chiari Malformation.
  • Chiari Malformation patients have problems with the vertebra and disc in the cervical spine resulting this area to be unstable. So, many exercises including lifting weights could potentially be dangerous.
  • Lifting weights is not recommended as this can put pressure and strain on the neck. Straining can increase CSF pressure and if there’s an obstruction, this can lead to problems. What is CSF? It’s the medical abbreviation for ‘Cerebrospinal Fluid’ which is a watery fluid that is continuously produced and absorbed and that flows in the ventricles within the brain and around the surface of the brain and spinal cord.
  • Find a gym or classes in your area that offer programs for people with disabilities.
  • Speak to your doctor before beginning an exercise regimen and if you’re going to change it or begin a new one. Your doctor will know if your condition will allow for more activity or will recommend you keep your exercise light.
  • And finally, always listen to your body, never overexert yourself and don’t over do it. If you begin to feel weak, dizzy or light headed, stop right away.

If you have Chiari – or know of someone, and are doing an exercise regimen, let me know in the comments, I’d love to know what it is.

Hope you have a great day.

-A

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Patience – ‘Three Days Three Quotes’ Nomination Day 3

The last day for ‘Three Days Three Quotes,’ thanks again to the wonderful blogger over at Reveuse.

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AND don’t forget to visit my nominees ….

To you three ladies, I’ve followed you three amazing women since day one of my blogging journey and have – and continue, to learn so much from you! I see your strength and vulnerability shine through in each one of your writings! Please know that you are loved, appreciated, that I admire you and continue to enjoy following your journeys!

HERE ARE THE RULES:

Thank the person who nominated you.

Post a quote for 3 days andexplain why it appeals to you.

Nominate bloggers each day!

MY THIRD QUOTE:

“Patience is bitter, but its fruit is sweet” Aristotle

I was so intrigued to find the proper definition for patience, that I Googled it. Patience is ‘the capacity to accept or tolerate delay, trouble, or suffering without getting angry or upset.’

If you’ve followed my journey you know that I have chronic pain, not from time to time, not every other day, but daily. D-a-i-l-y. I like to say, I don’t have ‘good’ days,’ I have bad days and I have even worse days. And I’ll be transparent and allow my feelings to be shown through your screen. It’s my reality, anyone living with a chronic illness knows that we have to practice patience every single day. And I’m not talking about having patience for your spouse, children, co-workers, family, etc. no! You see, we have to be patient with ourselves, be loving to myself, my body and mind, not to get upset or angry as that can trigger other symptoms like the infamous frustration, that can ultimately make things much worse.

I am my worst enemy. I beat myself up for not being a ‘normal’ woman – because who wakes up daily with pain?! I beat myself up for not being able to stand for long periods of time – because my legs get so weak I’m a risk of falling. I beat myself up for allowing the everyday things ‘bother’ me – you see I am sensitive to noise, light, you know the sun is the worst for me, yes, how do shut off the world in order for me to feel ‘good.’ I beat myself up for not being able to meet others expectations – they’re just too high for me to meet. I beat myself up for not being able to get in the car for long periods of time – you see with Chiari Malformation + Syringomyelia I get nauseated in the car when riding for too long and require I keep medication on hand and bags in the car in case the need arises to regurgitate, Disney trips are as daunting as they are lovely for the children. I beat myself up for having anxiety – you see I can’t have last minute invites, last minute guests in my home, etc. my anxiety will go through the roof, I can’t do things on a ‘whim,’ I can’t do things like the ‘average’ woman can, like go to the grocery store without feeling pain run through my body, I can’t get last minute notices from my children’s teachers for a school event, my agoraphobia will prevent me from being present.

I need to have patience with myself, patience to love myself as I am and not want to change a thing about me, pain and all. I remind myself that I am me and there’s no one quite like me. I am beautifully made by the most high that has made me in His image. I am here to live with Chiari for reasons I am too stubborn to understand. I am doing the best that I can and I am as best of a mother as I can be. As this wonderful quote says, ‘patience is bitter, but it’s fruit is sweet.’ Yes! It’s so bitter, it’s harsh, it’s a pill too hard to swallow at times, it’s a tough reality too many times hard to accept, to face, to know! To know it’s there staring back at me …

Yet, yet! It’s fruit, it’s a message, it’s an everyday motivation to keep going, to keep walking, to stand on my weakest days, this makes patience so sweet! It’s as sweet as they come, to be taught to have patience from such a horrible illness is the sweet reminder of the strength that lies within me.

NOMINATIONS:

1. Magic In The Everyday

2. Simply Chronically Ill

3. Discovering Your Happiness

If you’ve missed any of the other two days of the quote challenge, you can read Appreciate Life Day 1 and Forgiveness + Hope Day 2.

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Hope you all enjoy doing this unique challenge and I look forward to reading the quotes you’ve chosen!

A-

Forgiveness + Hope – ‘Three Days Three Quotes’ Nomination Day 2

In continuation with the ‘Three Days Three Quotes’ I will not do ‘Nail File Fridays.’ I was nominated by the wonderful blogger over at Reveuse.

AND don’t forget to visit my nominees! They are such amazing women. I absolutely love following their blogs, they’re so interesting and inspirational!

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HERE ARE THE RULES:

Thank the person who nominated you.

Post a quote for 3 days and explain why it appeals to you.

Nominate bloggers each day!

MY SECOND QUOTE:

“Forgiveness is giving up the hope that the past could have been any different” Oprah Winfrey

I have kept this quote so dear and near to my heart – I mean how can I not?! I grew up in a single-parent home, my mother raising three kids on her own, working two to three jobs at a time, trying to make ends meet. I was the youngest of three. I was about 5 years old when I quickly realized I hated did not like the weekends with my father. I also disliked anything related to Father’s Day because at school I would be obligated to participate in making Father’s Day cards and such things. It wasn’t for any particular reason other than this meant being away from my mother – they were divorced for about 11 years, reconciled and have now been married for about 15 years. All thanks to Him. So, this quote among other things have helped me see that my father was not one, in any way a monster two, a cruel man or three, the enemy – he made mistakes because of the weakness that lies in man. We have recovered our father-daughter relationship that was once non-existent and have healed what was once broken.

Also, my Chiari Malformation + Syringomyelia Diagnosis – it’s incredibly exhausting just thinking about it! I have begun therapy which has been a great source in my journey to healing. I go back and forth thinking of the what-if’s, what if I was born different and not with Chiari – there is no such thing as having been born ‘normal,’ what if I hadn’t gotten married and maybe this wouldn’t have happened – Chiari was inevitable because I was born with it, what if I was stronger – I am as strong as I need to be, what if I could be like these other school moms without a care in the world and living pain free – looks are deceiving and I may have physical chronic pain however these other school moms I so ‘admire’ are battling other life pains.

This quote reminds me that giving up the hope that Chiari if not present in my life today things could have been different, is a lie! I am not Chiari rather I am living with Chiari. It’s given me the strength I never knew I had and that is worth not hoping my life could have been any different than what it is today.

NOMINATIONS:

1. Four Jordans

2.

3. A Disney World Adventurer

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Hope you all enjoy doing this unique challenge and I look forward to reading the quotes you’ve chosen!

A-

Appreciate Life – ‘Three Days Three Quotes’ Nomination – Day 1

I’m so excited for this nomination by the wonderful blogger over at Reveuse for the ‘Three Days Three Quotes.’ I find her blog so encouraging, she speaks on all things life, love and positive thinking – love her posts! She has a way of lifting you with her words, if you haven’t gone to visit her page – you must. Thanks again Reveuse!

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AND don’t forget to visit my nominees! They are such great women with even greater blogs. I love when they post, always so inspiring and interesting each in their own right!

HERE ARE THE RULES:

Thank the person who nominated you.

Post a quote for 3 days and explain why it appeals to you.

Nominate bloggers each day!

MY FIRST QUOTE:

“I think you need to go through some stuff to really appreciate life and understand what it means to persevere, overcome and have faith. I think those tough times make you a stronger person.” Judith Hill 

I had my life significantly altered due to a few surgeries and because of this, I now live with daily chronic pain. However, I have also seen a different perspective of it all, they’ve happened to me for a reason. They’ve helped me become a stronger woman, a loving no BS kind of woman because life is too short to live for others.

NOMINATIONS:

1.Middle Me

2. My Li’l Place

3. Magic In The Everyday

Hope you all enjoy and I look forward to reading the quotes you’ve chosen!

A-

Chiari 1 Malformation and Mental Illness

Chiari 1 Malformation and Mental Illness

While many of doctors that claim to have experience in Arnold Chiari Malformation would still say, Chiari is more “in your head” than anything else or “Chiari doesn’t cause symptoms” –  no further treatments need to be done, I disagree. I still like to describe Chiari as an invisible illness because I look so normal to the person in front of me but even as it goes unseen, it doesn’t mean that the symptoms and pain are psychological. If your current doctor continues to tell you that, “you are OK,” do not hesitate in seeking a second opinion and starting from scratch, find a doctor that does have experience with ACM. I got a second, third and a forth until finally in my search for new doctors, it led me to a great neurosurgeon in my area. Although, I haven’t found any research linking Arnold Chiari Malformation and mental illness, my experience with the disorder has led me to believe that self advocacy and self care is essential. The need to mentally help yourself, is important. I realize that even after having had two surgeries due to Chiari 1 Malformation and Syringomyelia, the mental challenges that come after going through such a traumatic experience is one worth talking about.

Can you remember the day when men dressed in white coats – surgeons, came to your hospital bed side to inform you of your test results, followed by the procedures that you will soon have to endure? Because even after having Chiari decompression and Syringomyelia laminectomy, know that none of these surgeries are a cure, these surgeries are needed just to prevent permanent nerve damage. Also, these surgeries are not a guarantee that they will help alleviate any of the current symptoms. So, whether mental illness has a place in your life, in form of depression, anxiety, social anxiety, baby blues, postpartum depression, autism, post traumatic stress disorder, eating disorder, substance abuse disorder, please know that you are not alone. Also, I encourage you to find your voice and find the courage to get help, professional help. Because like many things, mental illness has no one face, it does not discriminate and it can happen to anyone.

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So, if we’re going to go down this honesty path and I remain true to myself, besides you knowing these tidbits about me, know that aside from being a brain surgery survivor, I have been dealing with depression, social anxiety and agoraphobia since my decompression surgery. Which according to the Webster’s dictionary, agoraphobia is a fear of open spaces, making it difficult for the person to leave their house. Please do not assume that I am cooped up in my home. It just means that it takes me a lot longer to mentally prepare myself to get out of my home and do things the “ordinary” person does so naturally. They include things like attend doctors appointments or go for a quick trip to the store. It can take days to mentally prepare myself to leave my house for a doctors appointment – at times at the end even canceling. These tasks are challenging for me, perhaps you are dealing with a different mental illness.

If you’re asking and wondering how I found all this out. Well, the turning point for me came in form of  a routine neurological visit that led my doctor to suggest I see a psychologist. Of course coming from a family where psychologists were ever mentioned, I immediately got defensive and declined. When the doctor – bless his heart, asked why, I quickly became defensive and said, I am not crazy. He then replied, “I am not crazy either and I see one, because after a 20 year marriage that came to an end, seeing a psychologist was a way I was able to cope.” This made me feel one, not crazy and two, open to the idea of seeing a psychologist. And as 2017, am now seeing a psychologist and psychiatrist, both of which work hand in hand to get me from feeling ill to feeling well. This is something hard to admit because society has placed a negative stigma towards psychology and mental health. It’s something that isn’t spoken about, it’s frowned upon and shamed. The last time I read on someone advocating on mental health was coming upon an article from singer, Demi Lovato. I think being silent on metal illness is so much worse than the topic itself. People build things up inside because they’re afraid, afraid of being embarrassed, humiliated, misunderstood or feeling the wrath that it would potentially bring. I want to embrace not only my new body that has produced six babies to which I proudly wear six scars. But also the scars left behind by Chiari. However, learning how to embrace and accept my new life after my Chiari 1 Malformation diagnosis has been challenging but also life changing. Chiari isn’t for the faint of heart. As part of my Chiari journey I want to feel free to find my voice and speak on how I work daily on my mental wellness. If you’re working on yours, never give up and if you haven’t started, know it’s never too late to start. I’m convinced this disorder is part of my life but definitely not who I am. Let me be the first to acknowledge that God continues to play a huge part in my journey to recovery – maybe not in the most ideal way because I am so flawed! My religion and spiritual beliefs have helped me in my recovery – I am Catholic. Spirituality helps in recovering from things like stress to mental illness. However, I do also believe that aside from my religion, medical help in the form of professional counseling and medicines also help. Mental illness is by no means anything to be ashamed of, seeking help in knowing how to manage it in the best way possible is important for your well being. The main goal is to lead a peaceful, meaningful life and to continue on the road to recovery, that is both spiritual and mental.

Also, know that it’s OK, it’ll all be OK, do not compare yourself to others, to other moms, dads, friends or co-workers, because to others we are either too much or not enough. And that’s OK too.

Happy day friends.

-Ana

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Photo: Pablo Gentile

In 2013 Life Began with Chiari + Syringomyelia

As short as I’d like this post to be, I have an inkling of a feeling it’ll be anything but. However, my goal is to try to be as thorough as I can, starting from the beginning of my journey with the disease. A little history of my health, as far back as I can remember as a child and adolescent, I had ongoing headaches and migraines. As my mom would later realize, she’d give me Tylenol just so that I could get through school hours without having a headache mid day. My first episode to what we know now to have been Chiari 1 Malformation, unfortunately went undiagnosed at the hospital. After many tests, I was sent home with what they said was a migraine. This is unfortunate but true to many Chiarians. So after I had a second episode we decided to now go to a different hospital. The official diagnosis came in May 5, 2013 when what was supposed to be a quick trip to the ER, would be the trip that ultimately changed my life. The reason for the ER trip, muscle weakness, problems with coordination, trouble walking, blurred vision, seeing blotchy black spots, sensitive to light, sensitive to noise, dizziness, headache, vomiting and nausea, vertigo, decreased sensation on my left side and trouble swallowing. Things like bending forward, pulling, pushing, straining, lifting became intolerable. After blood work, CT Scan and MRI the diagnosis was Chiari 1 Malformation and Syringomyelia.

We’ll go through a quick crash course for this rare disease, Chiari 1 Malformation is a condition in which brain tissue extends out of the skull causing it to press downward into your spinal canal, present at birth. What does this mean you ask, basically the brain is too big for the skull and it’s causing the brain to stick out or herniate at the base of the skull causing pressure to the spine, my cerebellar descended 12.8 mm downward.

As to Syringomyelia, this is a rare disorder in which a cyst forms within your spinal cord. This fluid-filled cyst or syrinx, can expand over time and compress and damage part of your spinal cord from its center outward. My syrinx began at C3 to the top of T2. You must know that in most circumstances, to have a syrinx present is considered to be a side effect of another problem, in my case, Chiari. The surgery that one can have to relieve the pressure in the head caused by Chiari is decompression surgery.

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What is decompression surgery? I’ll go a little more in depth with my personal 2013 decompression surgery for Chiari. I’ll give you small snippets of what was done inside the operating room. While I was fully sedated, endotracheal intubation was done by the anesthesia team. The eyes are then taped shut and I was placed on the Jackson table with Wilson frame. The head was clamped in the Mayfield 3-pin head holder and affixed to the bed. Then, moving the neck slightly forward, the hair is now clipped and/or shaved with a hair clipper. The surgeon now makes a mid-line skin incision from the back of neck area up to the head to release pressure at the base of the skull. This is done by sawing off bone, opening the dura and then closing the dura matter with a patch. The bone would not be returned back to area. Because the cerebellar tonsils descent or herniation was significant – 12.8 mm to be exact, the decision was made to shrink the tonsils. They removed the tonsils and cerebellar tissue by a few mm’s on each side. A dural repair graft was sewn in to achieve further dural compression and the dura was stitched closed. Lastly, I was then  flipped over to a regular bed and extubated before leaving the operating room. The patient would have a hospital stay of a couple days – mine was 15 days. The neurosurgeon on call the day I arrived at the ER on May 6, 2013 would also be my surgeon on May 9, 2013, surgery day. After my discharge and before my post operative follow up visit with the surgeon, I was admitted to the ER twice, both times diagnosed with aseptic meningitis also known as viral meningitis. Note that viral meningitis is more common and less severe than bacterial meningitis. I was also placed on medications to help with the anxiety that followed from surgery, pain medications and muscle relaxers.

Although I was also diagnosed with Syringomyelia at the same time as Chiari, the surgeon did not attempt to touch this at this time. He mentioned that addressing the Syringomyelia would be  too risky – but aren’t all surgeries risky?

Please keep in mind that I am not a doctor by any means and by writing this, I am expressing my personal experience with the disease. The one of many obstacles Chiarian’s face is that it seems as if no one has ever even heard of these conditions. The lack of general awareness Chiari has, has encouraged me to be a voice and help spread awareness – hence the reason behind creating this blog. Because ultimately this can become a burden – huge, to patients trying to inform family, loved ones, friends, co-workers etc., about what they go through. Where do you begin, how to even explain?! Also, as you may already know, be informed that like any surgery there are potential risks and other procedures may be needed in the future even after a successfully performed decompression.

So, fast forward to 2017, endless complaints to my neurologist and surgeon regarding my 2013 diagnosis of Syringomyelia, all of which assured me all was good. I was still since my 2013 diagnosis, experiencing ongoing symptoms, had countless ER trips, on many pain medications that I decided to make a change. I changed hospitals, doctors and started from zero. I then visited multiple doctors in different hospitals, had MRI’s done for all of them and all of which said to continue medication and that addressing the Syringomyelia surgically would be too much of a risk. Finally after having a borderline break down came a break through. I remembered and decided to reach out to a surgeon I had researched in 2013 after my decompression, Dr. Barth Green, a neurosurgeon. His office isn’t too far from where I live in Florida and so I made the decision to call his office. I had a lot of digging to do first for the neurologist Dr. Martinez-Arizala -they work in the same office. He first needed to see my medical records to determine if my case would be moved to surgeon Dr. Green for final evaluation. The process would take weeks. Yes, this is the system and this is the way things operate. This meant I had to go back to the hospital where I had decompression surgery to gather it all. I had to get all of my records, from MRI’s to CT scans, all to be saved on CD’s, this included before and after surgery, any and all medical records, operative report, all doctors notes, etc. etc.! All. Of. It. He wanted to see it all! Thankfully all was not in vain, I was called by the surgeons nurse to come in and meet with Dr. Green soon after all my medical records were sent. He had already evaluated my case/records on our initial visit and recommended laminectomy with a possible shunting of the cyst, meaning placing a shunt was a possibility. They say, “possible shunting” because even after having done an MRI prior to surgery, the final decision is made at the time of surgery. There is really no way of knowing what the doctor is dealing with until he opens – too graphic! Sorry! The date of surgery was on November 7, 2017 and here laminectomy was performed and a syrinx shunt was placed. The syrinx shunt diverts the fluid from the syrinx into another space where it can be absorbed. There’s a few locations where the fluid can be absorbed and this is what differentiates one shunt from another. The shunt I have is absorbed in the peritoneal space or abdomen. The space location is determined on the patients case and the surgeons personal preference.

I appreciate you coming this far in the post and following my journey. Those of you that can tolerate not so pleasant images, I share some pictures of my hospital stay following my most recent November 7, 2017 surgery for Syringomyelia.

Xo – Ana

 

 Pictures following my November 7, 2017 surgery for Syringomyelia