The laundry list of symptoms

Now that I have shared a bit more of my story with you today, I thought I would share the list of most of the symptoms. Previously I listed the most common, but most it seems Chiarians can almost check off each symptom on this list. This list is for educational purposes and not for diagnosing yourself or anyone else. If you suspect you or someone you know may have this condition, speak to your Doctor and get reffered to a Neurologist. It can only be diagnosed through an MRI test.

Arms: Numbness in either or both

Back: Cracking/Popping sounds while moving
           Pain
           Spasms

Blood Pressure: Changes with head position
                            High

Chest: Pressure

Ears: Sounds of water/fluid
          Intolerance to loud sounds

          Pain
          Pressure
          Ringing

Eyes/Visual: Depth Perception Problems
                      Difficulty Reading/Focusing
                      Double
                      Halos
                      Intolerance to bright light
                      Loss
                      Pressure behind eyes
                     Spots
                     Unequal pupil size

Fingers: Numbness in either or both

             Decreased sensation

Feet: Numbness in either or both
          Poor Circulation/Coldness

Hands: Tremor
             Poor Circulation/Coldness

Headaches: All
                    Migraine

                    Feeling of pressure at the back of your head

Hips: Pain

Mind: Concentration Problems
            Difficult focusing
           Memory Loss

Mouth/Throat/Nose: Difficulty Swallowing
                                    Excessive Thirst
                                    Gag reflex problems
                                    Hiccupping constantly
                                    Loss of Taste
                                    Loss of Smell
                                    Pain on jaw line
                                    Sinus/Mucous problems
                                    Slurred Speech
                                    Swollen lymph nodes

Muscles: Sensation of weakness

Neck: Cracking/Popping sounds while moving
           Spasms
           Stiffness
           Pain
           Pressure
           Tension

Other Movement: Difficulty Driving

Overall: Decreased Sensitivity to temperature
               Degraded Motor Skills
               Fatigue
               Nausea

Sitting: Can’t sit for long periods
              Difficulty
              Dizziness
              Fatigue
              Imbalance

              Sensation of ground or chair moving
             Swaying unintentionally
             Vertigo

Skin: Dry
          Intense Itchiness
          Profuse Sweating

Sleep: Insomnia
           Apnea

Standing: Can’t on uneven ground
                  Difficulty
                  Dizziness
                  Fatigue
                  Imbalance
                  Swaying unintentionally
                  Vertigo

Toes:  Numbness in any or all
           Decreased sensation

Urology: Loss of bladder control


Walking: Can’t on uneven ground
                 Difficulty
                 Dizziness
                 Fatigue
                 Imbalance
                 Steps Difficult
                 Swaying unintentionally
                 Vertigo

Weight: Decreased muscle tone
          

Women: Menstrual Problems
                Severe Cramping

The Friday game

The day after I signed off on my surgery, I called my surgeons receptionist to set the date. She wasn't very pleasant and dismissed my case to be unimportant. I would simply be put on an elective list and probably wouldn't hear from her until the new year. I was somewhat upset by her attitude and explained that I was advised I was an urgent case. She simply said "It's not like you have a brain tumor or something. You'll just have to wait!" Ummmm??? I completely understand waiting for an appt and someone being placed  ahead of me, but her attitude was she knew better than the surgeon! Last time I checked, receptionists didn't have medical degrees. While I get that she has heard of all types of conditions etc, she is not the Doctor! When I explained that he requested my surgery to be done within 3 months, she simply laughed. Realizing it was going to be impossible to deal with her, I ended the conversation.

A couple of weeks later, on Friday October 15th, I got a call from the receptionist. I was to have the surgery 1 week later, October 27th. In shock, all I could say was "ummm, next Wednesday?!?!?...ok...) I hung up the phone and cried harder than I have ever cried before. While I knew it was a good thing, I was terrified. More terrified than I had been before. Of course I knew the day was coming whether I was prepared or not, but its completely different when you know the day is coming sooner than later. In a blubbery mess, I told Neal what just happened. We spent some time together, taking it in. Once I calmed down a bit, it was time to tell my family. Preparations were made at work as well. I did my pre-op tests and was set to go in.

One week, on Friday no less, I came home late that evening to a message on the answering machine. My surgery was cancelled. Again, I was a blubbery mess. So much preparation had been done with work, my mom & Neal. See the plan was for me to go to my moms to recover for the first month after my surgery, since Neal is in school and would not be home during the day to assist me. My mom is a member of her condo board and had to give over certain projects and delay meetings. Work had filed my papers to have approved time off and I was leading the United Way campaign. I had given over the campaign for several others. That was just the easy stuff... I was on an emotional and mental roller coaster!! Any surgery is hard to accept, but brain surgery is pretty stressful! I returned to work the following week and told myself to be ready for the next call.

Two weeks after, again on a Friday, I came home to another message. It was to "see if they could maybe give me a surgery date" Maybe?!?!?! Maybe she should do her job & just schedule one. When I spoke to her after it was cancelled the first time, I told her to just schedule the date and time and I would be there. She actually called me the next day (A Saturday) This time I had a choice of end of the day Nov 10th or first of the day Nov 18th. I think she was afraid of the messages to come from me if it was cancelled again. Each time she left me a message, I had left one for her and they weren't always pleasant as she continued to have an attitude. Remember her comment of I "wasn't an emergency or urgent case. Again, its not like I have a tumor or something." ? That continued from the entire time between when I signed my papers until the last call on the Saturday. She was like night and day. She was really pleasant and concerned. It was weird but I took it!

I chose Nov 18th, 8am as I didn't want to risk being cancelled again. I also thought then I wont be awake enough to be scared. Preparations were made again and I was off work as of Nov 10th. This time I couldn't wait for the date to come. I think the very first call had scared me enough that I felt more prepared emotionally and mentally this time. That's not to say I didn't wasn't emotional the day of, just that I felt ok about in the days leading up to it. I quickly got my Christmas shopping done, then spent the remaining days at home, resting.