Headaches, often severe, are the classic symptom of Chiari malformation. They're typically precipitated with sudden coughing, sneezing or straining. People with Chiari malformation type I also can experience:
- Neck pain (running down the shoulders at times)
- Unsteady gait (problems with balance)
- Poor hand coordination (fine motor skills)
- Numbness and tingling of the hands and feet
- Dizziness
- Difficulty swallowing (sometimes accompanied by gagging, choking and vomiting)
- Vision problems (blurred or double vision)
- Slurred speech
Less often, people with Chiari malformation may experience:
- Ringing or buzzing in the ears (tinnitus)
- Poor bladder control
- Chest pain, in a band-like pattern around the chest
- Curvature of the spine (scoliosis) related to spinal cord impairment
- Abnormal breathing — specifically, sleep apnea characterized by periods of breathing cessation during sleep
As for me - mine are odd for the most part. Maybe one of the most frustrating things is the unpredictability of this disease. Days are different, some days I feel as normal as can be and others - well, let's say I dream of dancing on the streets of gold it's so bad. My symptom story begins at least 6 years ago, with headaches. A former gym rat, recovering from the birth of my last baby - I decided to get my out of shape butt back in the gym. Didn't last long, every time I lifted weights - I would get these horrible headaches. Now I never lifted like a girl. No pink dumbells or wimpy machines for me. I lifted with the big boys - squats, deadlifts and the like. Heavy weights, low reps was my thing. So - my first of many "straining headaches". So - I quit the gym, we moved and life got in the way. The headaches went away and I felt human for awhile. Then the insomnia began.
I was at the end of my first marriage and dismissed the insomnia as part of the stress of becoming a single Mom of six children. Medicated it with drugs and alcohol, to a functioning level as always - nobody even knew. Control was my specialty. That period followed itself by the opposite. Sleep was all I did. 15 hours a day wasn't enough. I didn't eat because I wasn't awake long enough to eat and even if I was, I didn't have the energy to get food. Somehow I gained 50 pounds in just a few months, despite not eating. Many other odd symptoms in this period but I was diagnosis with Hashimoto's - an autoimmune hypothyroid condition.
Fast forward a few years, thyroid under control by meds and I am attempting to be human again. New husband, new house, new life, new me. For once in my life I was emotionally and spiritually healthy - or at least on my way. Low back pain had become a daily thing. MRI showed moderate stenosis and a mild disc bulge at L5-S1 - not abnormal for a woman my age who led the life I had. Always being the rough and rumble kind, not out of the norm to see disc changes in your late 30's. Former marathon runner, gym rat turned couch potato :-( I was a CENA for years, lifting the elderly daily. I loved my job but assumed I had caused my back problems. Tried everything - PT, meds, chiropractor - nothing worked. I resigned myself to that life and quit working.
Odd symptoms really starting creeping in here. As if a switch was flipped - one day EVERYTHING hurt. Every joint in my body hurt. No swelling, but I would cry in my sleep it was so bad. A million Doc's later, I was tested for everything under the sun and was no closer to a diagnosis. The pain subsided to mostly lower back and my hip so I assumed it was all due to my lower back and changed my lifestyle.
The headaches returned one Saturday. I was a Youth Leader for my church and *LOVED* it. Being a big kid, my gift to them was love and goofy games. I would laugh so hard and one day - i felt like my head would explode it hurt so bad. I was blinded by pain. Two days later, the headache was finally gone and returned every time I laughed really hard. Not trusting Dr.'s, knowing they wouldn't find anything wrong - I researched it and diagnosed myself with exertion headaches and moved on. After a few months, it just stopped as quick as it started.
I had some more odd symptoms creeping in at this point. My finger tips and feet would go numb and my hand grip strength was an issue. Again, hating Docs, I decided it was Carpel Tunnel and bought a brace and once again altered my lifestyle. No mixing, no bending, no lifting - I was almost useless :-( Maybe a slight exaggeration but that's how it felt. My body and spirit were at war. I am an active, energetic, hyper person trapped in an old person's body at this point.
I am always thirsty which means I am always in the bathroom. Annoying to say the least. Again, assuming this is just how it is. I did have my sugar tested a million times and no diabetes so once again - just another life altering symptom. Episodes of dizziness, loosing my words and my memory became another new norm. Typing this out, I realize how many things I blamed things on. Former drug addict explains the memory loss and word issues in my head. Since Docs can't figure me out and I have given up on that profession, I found excuses for every odd symptom I had.
The headaches returned this fall. I went over two weeks with a headache and severe dizziness. The flu or some odd virus I assume. That went away, only to return a few weeks later with a new symptom - drop attacks or fainting or whatever you want to call it. I would have the headache, get dizzy then would feel like the world was spinning and knew I was going down. Happened a few times. This is just my life I assume. Pain in my shoulders and mid-back, loosing feeling in my limbs, loosing the ability to move my entire leg. Must be all related to my back or drug induced brain issues right? I walk into walls and trip over nothing but this is just me - I'm a klutz and it's cute right? Randomly loosing the ability to read is because I have bad eyesight right? Either that or the Docs are right and there is nothing wrong with me and I am just a nut job.
One evening, I somehow must have fallen and blacked out. I was walking the dog, came inside and was different, confused and grumpy. Took a tiny nap and woke up and had lost 3 years of my life. Hubby took me to the ER and we assumed it was yet another concussion. First one was in February when my hip "gave out" while walking the dog. This is where I got the diagnosis of Chiari. Hence my journey had truly begun.
I am very curious how many of my symptoms are Chiari induced. I have read stories and it would appear almost all of my odd crap is Chiari. Being called a nut job is also common in Chiari people. Docs can't figure you out since they arn't trained to diagnose Chiari so they assume you are making it all up. Sadly, once again the research isn't there to support a firm case of what really are Chiari symptoms. I guess we will find out after surgery.
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