Hello everyone! Its safe to say that the month of May has had some CRAZY weather changes! A lot of people who have chronic illnesses have problems with different types of weather due to the change in atmospheric pressure and can sometimes even predict what the weather will do before it actually happens. It's kind of cool when you think about it, but it is definitely not fun! People ask me if my symptoms change or heighten during these times, so this post is going to be all about that. I've never really listed out all of my symptoms as a whole, so this will be good for myself and to help inform others. *Reminder that this only applies to my case. Every single Chiari case is different!*
Chronic:
- headache
- difficulty sleeping (insomnia)
- fatigue
- hand weakness
- memory problems
- photophobia
- back pain
- depression/anxiety
- poor eye tracking/focusing
No matter what I do, whether it be a good day or a bad day, these are the things I deal with everyday and if not, more then half of the week.
Off and On:
- dizziness
- leg weakness
- numbness/tingling in hands, legs, and feet
- nausea
- blurred vision
- tinnitus
- difficulty swallowing
- facial numbness
- slurred speech
- abnormal gag reflux
- restless leg syndrome
These symptoms typically occur when I'm having a bad day, or just randomly with no cause which is always a fun time.
Heightened By Cold:
- neck pain
- fatigue
- difficulty swallowing
- all over body weakness
- back pain
When the temperature decreases or a storm is coming, these symptoms of mine go crazy. It becomes hard to move my spine and overall my muscles tighten and won't relax. I have noticed that during the fall and winter, I have much more back pain then I do in the springtime (at least that's how it is looking).
Heightened By Heat/Sun:
- headache
- dizziness
- weakness in hands, legs, and feet
- numbness in hands, legs, and feet
- balance problems
- facial numbness
- photophobia
- slurred speech
- poor eye tracking/focusing
- restless leg syndrome
When it is sunny out and hot, my nervous system goes into overdrive. All of the nerves that have been permanently damaged are revealed to me and it makes it harder to use the right side of my body, especially my hand. Typically on days like these, I don't look at my phone as much and I can't read well and I have to wear my indoor photophobia glasses. It's very hard for me to stay cool and when I get overheated, my nerves go crazy as well as my restless leg syndrome.
I hope that this post was really informative to you all and helps you understand how weather affects me and others with chronic illnesses!
Wednesday, May 31, 2017
Tuesday, May 9, 2017
CLEAR MRI & 1 Year Anniversary of Surgery #1
As many of you already know, last Monday, May 1st, I had my three month post-op MRI scan and follow up with Dr. Litvack. Leading up to this appointment, I had so many emotions and I honestly thought my spinal cord would still have fluid in it with the amount of back and neck pain I was still having each day. When Dr. Litvack came in all cheery, I was so relieved. He pulled up my imaging from before my second surgery and the one from earlier that day. My spinal cord was clear and my cerebellum was in the correct place! I was worried that after the cerebral tonsils were taken out that my cerebellum would slump down, but now my brain looks like a normal brain (pic below) with extra room to spare!
I still have a lot of irreversible brain and nerve damage, but nothing can get worse unless something weird happens. Dr. Litvack said he would be seeing me within 2-3 YEARS to check up on my lesion on my frontal lobe and to make sure nothing crazy is happening back there. My job is to track my symptoms and any changes that happen. Obviously if I start to feel really bad I have to call the neurosurgery unit. I also need to track any symptoms that increase quickly in case I have a leak in my dura patch (CSF fluid leak) which could cause hydrocephalus. Dr. Litvack referred me to a headache neurologist in hopes that I find relief in that department. I still get headaches at least 4 times a week, but usually more than that. I will still continue to be a patient at the pain clinic and my physical therapy and massage therapy places. It's still a long road ahead, but my mind is eased.
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Alrighty, second part of this post. Today is May 9th, meaning my first Chiari surgery was exactly a year ago! I seriously can't believe it has only been a year since I first went under the knife. A lot of my Facebook memories are popping up, and one of my posts talked about how I couldn't wait to be fixed after this surgery... Little did I know that the first one would just make me worse and only 8 months later I would be having another one. Talk about trauma! I pray that I never have to go through another surgery, but it sounds like I won't need to for a while :) crossing my fingers! I never want to go through that again. Although it has only been a year, I feel like this whole thing has aged me 20 years. They told me it is a 6-8 week recovery, but that's only for the incision and in some cases, the muscles and tissues underneath. In reality, it will take years. Here's to the next years of determination and recovery!
I still have a lot of irreversible brain and nerve damage, but nothing can get worse unless something weird happens. Dr. Litvack said he would be seeing me within 2-3 YEARS to check up on my lesion on my frontal lobe and to make sure nothing crazy is happening back there. My job is to track my symptoms and any changes that happen. Obviously if I start to feel really bad I have to call the neurosurgery unit. I also need to track any symptoms that increase quickly in case I have a leak in my dura patch (CSF fluid leak) which could cause hydrocephalus. Dr. Litvack referred me to a headache neurologist in hopes that I find relief in that department. I still get headaches at least 4 times a week, but usually more than that. I will still continue to be a patient at the pain clinic and my physical therapy and massage therapy places. It's still a long road ahead, but my mind is eased.
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Alrighty, second part of this post. Today is May 9th, meaning my first Chiari surgery was exactly a year ago! I seriously can't believe it has only been a year since I first went under the knife. A lot of my Facebook memories are popping up, and one of my posts talked about how I couldn't wait to be fixed after this surgery... Little did I know that the first one would just make me worse and only 8 months later I would be having another one. Talk about trauma! I pray that I never have to go through another surgery, but it sounds like I won't need to for a while :) crossing my fingers! I never want to go through that again. Although it has only been a year, I feel like this whole thing has aged me 20 years. They told me it is a 6-8 week recovery, but that's only for the incision and in some cases, the muscles and tissues underneath. In reality, it will take years. Here's to the next years of determination and recovery!
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