It's not just been awhile since I've posted..... It's been a real long while. I haven't felt this good in years. I still have good and bad days, mainly when the barometric pressure changes, but I'm just so lucky that I can heal and rest on those days.
So, since my surgery I have been able to do some pretty amazing things. but I have that saved for a different blog. This blog is about the month of September. In one of my Facebook posts, I talked about August being Gastroparesis Awareness Month and I explained a little about how it affected my life. While, this month is MY BIRTHDAY MONTH!!!! OKay, I am serious about it being my birthday month, but it is also Chiari-Malformation Awareness Month. So, I am going to tell you about how Chiari affected my life before and after being diagnosed.
I was diagnosed with Chiari in February of 2020, I think? To tell you the truth everything blurred together during December of 2019 and July of 2020. My life was doctor after doctor, MRI after MRI, Test after Test, Blood draws after blood draws. During that time I lost count of the visits, the dollar amount going out, the bandaides over my blood draw spots.... But I can tell you this, I have always been a fighter and I was not ready to give up hope on feeling better or finding out what was wrong with me. So I went to the doctors over and over.
Seriously though, God sent my family to Cody, Wy for a reason. Many people that have been diagnosed with chiari have fought for years trying to figure out what was wrong with them. Me, when I was ready to accept my new life in Wyoming, I was given a doctor that did everything he could to help me get through the system faster, knowing that I've already exhausted my options in Minnesota for hope. God knew I was tired of fighting and I didn't have the energy to fight anymore. You know what's funny, I thought for sure the car accident caused the Chiari, but it didn't. I was born with this. My neurosurgeon, which I love and am so thankful for told me I was the perfect example of a Type 1 Chiari Malformation Patient.... He was so excited. He wished he had students and a camera to record the surgery. To be honest, I wish he did too, I love that stuff.
So, I'm getting sidetracked. When I was diagnosed I was frustrated, I love control and I know that, but I also have learned I love knowing things more than control. So, I joined a facebook support group (this was before the surgery was an option). I asked questions, I researched. The interesting thing with Chiari is everyone has similar, yet different symptoms.... just like my gastroparesis. Only extensive MRI's and tests can figure out what is wrong, and thousands of dollars, and not even ALL Neurosurgeons believe that Chiari is a thing. They actually have told people with Chiari it's all in your head, which in reality they are right, they just can't figure it out. So, this support group was great. I asked question after question, and then someone sent me a list of Chiari symptoms that she received from her Chiari Specialist.
So, here is the list..... Oh, you can't read the things in the picture. Let's just say all the symptoms in the yellow are symptoms I was having. So, remember I look like a healthy person. I smile, I look like a healthy weight, I look like I love my life (which I do), I look pretty put together.......right?
Since you can't read the symptoms in the image, I have listed them out for you.
These were the symptoms I was dealing with on a regular basis.
Cardio-Respiratory Problems:
Episodes of rapid heart rate, heart palpitations, high blood pressure, tightness or heaviness in/on chest, abnormal breathing, shortness of breath, throat closes why lying flat, strangling feeling, feeling like there's a lump in your throat, sensitive gag reflex, inhaling fluid or food products into the lungs; sometimes accompanied by coughing, gagging, choking and or vomiting.
Mid-Chest Problems:
Difficulty swallowing, nausea/vomiting, gas/bloating, abdominal pain, increased food sensitivities, drooling, sinus/mucous problems.
Cognitive Problems:
Insomnia, Fatigue, Brain Fog, Memory Problems, Aphasia (problems remembering words), Depression/Anxiety (gee.... I wonder why), Sensitivity to auditory stimuli, over emotional, being easily confused.
Problems with Extremities:
Cold hands/feet, decreased hand coordination, numbness/tingling sensation, hand tremors, stiffness of the legs, arms/legs feel heavy and hard to lift, thickening of the finger joints, weakness in extremities.
Pain:
Headaches, neck pain, neck spasms, popping/cracking sounds in neck, popping cracking sounds in upper back when stretching, back pain, neuropathic pain in extremities, neuropathic pain in back of head/neck, feeling like your head is too heavy for your neck. (I used to tell Eric that I had a 20 pound bowling ball on my neck. Then I discovered after doing research that a typical head weighs between 12-17 pounds, so it went up to a 100 pound bowling ball on my neck.)
Equilibrium Balance Problems:
Clumsiness, dizziness (multiple times a day, Eric or Tatiana would catch me and keep me balanced), cervical vertigo, unsteady or drunk like walking (can't walk straight), swaying body, bilateral problems with coordination of movement, difficulty walking on uneven ground (I always fell), difficulty negotiating steps (I needed Eric to help many days, otherwise I went down on my behind one step at a time).
Voice/Speech:
Slurred speech, incoherent speech, disjointed sentences.
Sensory Problems:
Crawling feeling on scalp or body (I always felt like I had bugs/flies crawling on me), Itchiness, pins/needle sensations, burning sensations.
Ear/Hearing Problems:
Pressure in the ears, ringing in ears, intolerance of loud or different sounds, pain along ear, eye and jawline, fluid like sound in ears (like running water), hear heartbeat in ears, increased sensitivity to certain frequencies, increased sensitivity to noise.
Eye/Vision Problems:
Blurred/double vision, blind spots, problems with depth perception, floaters, spots, halos, sensitivity to bright lights, objects appear to sway, difficulty focusing on lined texts (the words change sizes), soreness in the eyeballs.
Other Physical Problems:
Decreased muscle tone, muscle weakness, restricted movements, decreased neck mobility, profuse sweating, inability to regulate body temperature (used to be 97.6, now fluctuate from 96.4-99.6), pulling sensation while sitting/standing, reflux, gastroparesis, food get stuck in esophagus, meds get stuck in esophagus, bowel incontinence, excessive thirst (which I've kind of always have had), skin problems, dry skin, dry lips, and increased allergies.
So, as you can see there are many symptoms with this disease and I am very blessed that my doctor in little Cody, Wyoming is truly an expert about this disease. However, I just want you all to remember when you see someone that looks healthy, you can never be sure what their past was like, what their home life is like or what invisible illness they may be dealing with. Love and compassion for every human can go a long way, just imagine how many lives you can touch changing your mindset.
Now, of course, because it is MY BIRTHDAY MONTH, if you so ever wish to send me a birthday gift (wink-wink) I ask that you donate on my blog to one of these incurable diseases I have. https://www.thehollowstomach.com/donate
Thank you for taking the time to learn more about Chiari-Malformation and for reading this longer blog post. Oh, and for all of your love!
♥ Thea ♥
Comments