My

STORY

Short Story

 

My acute phase began in February 2012 and I was diagnosed with Chiari Malformation Type 1 in March 2012.

My list of symptoms, which kept me bed-ridden for months until I started my NUCCA treatments and my own work. Each one of these symptoms is directly related to cranial nerves:

  • Intracranial and back of neck pressure that varies where and at different levels of severity

  • Severe tinnitus

  • Foggy head/feeling of slowness and disconnected-ness as if my brain wasn’t communicating with my limbs

  • Inability to read, concentrate, communicate or find words I wanted to say

  • Cervical spine pain and trapezius pain

  • Relentless fatigue

  • Chest tightness/difficulty breathing

  • Irregular and heavy heartbeat at the slightest movement or standing up

  • Chest Pain

  • Some joint pain

  • Left eye twitching and not dilating or able to move side to side

  • Left hand tremor

  • Difficulty swallowing

  • Noise sensitivity with black and white patterning (mostly chevron) while my eyes are closed, occurring with sharp, loud noises

  • Light sensitivity

  • Occasional headaches

 

 

 

My cerebellar tonsil herniation is at about 6mm, but this MRI was supine, so gravity wasn't having an influence on the tonsils. The length of herniation has no correlation with the number and severity of symptoms.

In May 2012 I found my NUCCA practitioner Dr. Gregg (more about this in the detailed story below) and as each day passed, my symptoms dissipated one after the other. Remember that along with NUCCA treatments, I was working on myself via acupuncture, fasting, meditating, etc. As I mentioned before, truly healing your mind and body requires myriad avenues of exploration, and surrounding yourself with humans and non-humans whom you love will only help the process. Dr. Gregg was an inspiration for this process and although I had it in me, I was too involved in misery to push myself at that time. It took one year and a few months for my body to be where it is today, almost to my old self. In percentages, I went from feeling about 5% to 95%.

By adjusting and then aligning the atlas bone, or C1, the soft tissue that runs through the occipital lobe will heal itself. With that area unbound, nerves are no longer constricted, blood flow and CSF flow are no longer impaired and you will find that your symptoms lessen or even dissolve completely. The body will normalize. Because there is no longer blockage in the brain stem, conditions such as Syringomyelia can be resolved.

It is vital to note that a Chiarian should NOT receive velocity adjustments from a regular chiropractor. Please make sure to research and discuss your symptoms with a trained and experienced upper cervical spine practitioner, such as NUCCA or Orthospinology.

Update: It is now October 2018 and I'm stable and happy, although with the weather patterns I have head pressure depending on how dense the air is. I've increased my spiritual practice, via meditation and other forms of healing, and have been working on love for myself and others. I'm stronger than I have been in fourteen years thanks to a daily exercise regime, mindful and wholesome eating (plus some wine...) and surrounding myself with people and non-humans who are positive and beautiful beings. I see Dr. Gregg every month or so for small adjustments that are made on my body and cervical spine, but not my atlas. Recall that with NUCCA, once the atlas is aligned the practitioner leaves it alone to let your body rebalance and heal. 

Long Story

In 2009 I ended up in the emergency room because I woke up unable to breathe. I was 37 years old. The emergency doctor on staff declared I had experienced episodic hyperventilation after monitoring my heart for three hours. My heart rate and blood pressure were normal, and a general blood panel also came back normal. We walked out with a bottle of Atarax (hydroxyzine) in hand.

It took me weeks to recover. I had to remain either laying down or reclined lest my heart would start beating rapidly, catapulting me into a quasi-panic state, causing my breathing to become shallow. I was scared. The only thing that was helping was hydroxyzine, which targets the central nervous system.

I am not a person who relies on western medicine modalities except in emergency situations. My husband is an acupuncturist and a Chinese herbalist. We tried acupuncture, herbs, but these were not having any effect besides calming me down emotionally.

Between that incident and January of 2012, I had recurring minor bouts of the same symptoms, only occurring around my menstruation. I was exercising every day with a combination of cardio and strength training and overall was feeling strong, but around December 2011 I injured my right bottom rib, so I had to stop exercising and be cognizant of my every movement. This was a symptom of what was happening to my body, unbeknownst at the time.

In February of 2012 when I started menstruating my symptoms came on and never went away. My body spiraled downward and I couldn't move without feeling dizzy, without my heart beating heavily and chest constriction. I was unable to concentrate and think of words. My Intracranial pressure was unbearable, starting from my cervical spine and continuing up to the top of my head, and to top it off lethargy had set in, weighing heavily upon my psyche. Gravity became (and sort of still is) my sworn enemy.

I began researching symptoms obsessively, desperately, which is fine for a general sweep of trying to get a grasp on what was happening, but is not advisable for serious and deep understanding nor pinpointing of one's scope of issues. What I found was that because I had so many symptoms, there was no specific disease or problem that was particular to what was happening to me. What I was experiencing could have been a myriad of diseases, all of which were not pleasant to say the least. 

My days consisted of laying down and watching movies because it was the only thing I could do to 1) keep the acute symptoms low and 2) keep my mind from going to a very dark place. I couldn't read (I am a voracious reader, so this was also troubling) and had a very challenging time communicating because I simply couldn't come up with the words and when I tried it was literally painful. As if my my brain was completely disconnected from my body. I had to focus on speaking and making my body function. This inability to think was one of the most terrifying experiences throughout my journey.

During this time my left eye began twitching, I developed a tremor in my left hand, and my ears were roaring because of the extreme intracranial pressure. I couldn't eat either. It felt as if I couldn't swallow and if I ate more than a morsel of food, my heart rate would shoot up and I couldn't breathe.

From February to April my days were spent in bed or reclining on the sofa. I roughed out a will and typed out what needed to be done if I were not here, in case I didn't wake up in the morning. I was falling rapidly into an abyss that I just couldn't climb out of, physically and emotionally. I did not want to to take prescription drugs, so I knew I had to pull myself out somehow without bogging my body down with chemicals. My only help was my husband, my family and our dog, who was my at my side the entire time. Our friends were also so generous with helping around the house or just coming over to offer emotional support. I am deeply ingratiated to them all for being there with so much love and positivity.

In late March, my husband suggested seeing another doctor whom he knew, one that he said would be willing to sit with us and actually help troubleshoot what was causing these symptoms, instead of shrugging us off with no understanding of what was truly happening. At the appointment, he performed a series of base neurological tests, such as balance exercises, eye-tracking, etc., and what he suggested was getting an MRI. My left side was not functioning properly and my left eye wouldn't dilate, which indicated a possible neurological problem.

I scheduled an MRI, completed it and waited for the results. The MRI revealed Arnold Chiari Malformation Type 1, with a cerebellar distention of approximately 5-7mm. I didn't have any other issues that may occur with Chiari, such as Hydrocephalus, Spina Bifida, Syringomyelia, etc.

Finally! Something to work from. I began researching Chiari Malformation extensively, signing up for forums, reading everything I could get my hands on. What I read was, in a word, disheartening. It seemed at that time I had one option: decompression surgery, which I changed the focus of my research to. The typical procedure is not necessarily one based on a standard minutia of surgical techniques, as one may think. It seems that different surgeons have different styles of the actual decompression, and of course all dependent upon the individual.

My husband and I visited with three neurosurgeons in the area, each with 50-100+ decompressions under their belt and each fairly blasé about the surgery and its outcome. There is no guarantee that a person with Chiari will be "cured" from the decompression. In fact, all three surgeons stated that they simply do not have the data, based on the number of decompressions they've performed, that their patients experienced any relief or partial relief from their symptoms. The only number any of them could come up with is an 85% success rate (which just so happens to be the number I've seen before during my research, but now know is inaccurate). What does that mean? They don't really know. This of course didn't sit well with us. Why would I risk going under the knife for a questionable outcome? Not only that, but one surgeon stated he wouldn't know what I needed until he "got in there." What if my intracranial pressure was so great that the surgery would actually make my symptoms worse? He didn't have an answer, except that he would then install a shunt so I could manage my own CSF flow.

As a side note, I did not meet with the supposed "experts" in the Chiari western medicine field, so I cannot speak for people who have gone to see these surgeons and have been made aware of better data than I. While I'm at it: I am not a medical professional, so please keep in mind that some people with Chiari may in fact have experienced a lessening or even total relief of their symptoms after decompression, and I think that is fantastic. However, from what I've read on the forums and online, many people who have had the surgery had some relief for a few months or years, only to have the same symptoms come back, or new ones begin. To my dismay, my research showed some surgeons actually remove the C1 and C2 if they feel it is necessary! Think about this for a moment. They are removing the bones that hold up your head and give structure to the soft tissue that runs through the area. I am one to always consider alternatives and in this instance wary of what neurosurgeons, making millions off of patients who are unaware of anything better available, tell me.

 

At this point I was even more frustrated. How am I supposed to live like this? There has to be another alternative to surgery.

Then, on a regular day, my husband's business partner in their acupuncture clinic was treating a patient who just so happened to be a NUCCA chiropractor. It's generally discouraged for Chiarians to have any velocity chiropractic work done, but NUCCA (National Upper Cervical Chiropractic Association) focuses on the cervical spine and more specifically, your atlas (C1) which the skull rests on and is vitally important to one's overall health. NUCCA adjustments are extremely gentle and impossibly subtle.

This amazing chiropractor, Dr. Partricia Gregg, attended a seminar the previous week that focused on Arnold Chiari Malformation and wanted to see me right away even though she was not accepting new patients. I consider this to be one of the most serendipitous happenings of my life. This was a sign.

I went to my appointment and spent five hours with her. She listened to my story, went through my extensive list of symptoms, cried, and then found out how a NUCCA adjustment could help me.

By adjusting and then aligning the atlas bone, or C1, the soft tissue that runs through the occipital lobe will heal itself. With that area unbound, nerves are no longer constricted, blood flow and CSF flow are no longer impaired and you will find that your symptoms lessen or even dissolve completely. The body will normalize. Syrinx will also be resolved, as there is no blockage of CSF at the brain stem. A syrinx dissipation is whilly based on the individual and the severity of the syrinx, so while this may be the case for some, each person's outcome will be unique.

And my body did normalize. It took about five months for my muscles to adapt to my new alignment, therefore I was easily knocked out of adjustment. During this time my symptoms disappeared, one after the other. Remember that along with NUCCA treatments, I was working on myself via acupuncture, fasting, meditating, etc. As I mentioned before, truly healing your mind and body requires myriad avenues of exploration, and surrounding yourself with people and non-humans whom you love will only help the process. Going from the inability to move or function to being able to work, do errands and in general have a pretty normal day was elating, incredible. I wasn't going to have to live in misery my whole life. Words cannot describe the relief.

After NUCCA all of my symptoms are gone. It took me from February of 2012 to February/March 2013 to stabilize. This is due not only to the physical adjustments to my atlas and cervical spine, but also to the uplifting positivity and courage provided by Dr. Gregg and my husband. Both enabled me to work on myself while providing a supportive and loving environment.