Playing the blame game is off limits

It's very hard to digest when a loved one or your partner says they feel you should be fully capable of working because you look like you can, even though they know we are in pain & "sick". We hear this enough from doctors, specialists, strangers, and what feels like every other person on the planet. While our minds race with some form of blame such as "They see me struggle every day" or "They know the pain I'm in!" and the many other thoughts that run through our minds. They all end with "Why can't they understand?!?!?!" or "Why aren't they being supportive?!?!?!" The answer is simply this: as much as they may want to understand, they can't because they are not in our situation, they do not feel what we are feeling. Like the doctors, they only understand what we convey and what we show through our actions. Sometimes our actions do not reflect how we feel because we have learned to "fake it"

Each of us has come to answer the question of "How are you?" with simply "I'm okay" We say this because we don't want to bog people down with our problems and pain, even though it consumes us at times. We push ourselves well beyond our limits because we are constantly learning them. One day, your limit may be much smaller than the previous day or vice versa. We are still discovering our "new normal" because it is forever changing. We want to be our "old selves" so we try to portray that that is who we are, despite what is going on inside & physically. Our "old selves" is what our loved ones see, therefore that is who they believe we are. We fake it so well, that even they are fooled. I think sometimes we even fool ourselves. Can we blame them for seeing what we are showing through our actions? This is not to say there aren't many days that are spent in bed, or on the couch; that many medications aren't taken just to get through the day without a trip to the hospital. When we lay down on the couch or in bed, watching tv or reading a book, we look like everyone else. When we take our pain meds every 3 hrs, even though the prescription says 4 hrs and we just can't make it, are they right beside us seeing it all? Not always, so how do they know?

It is very hard to understand how & why our loved ones don't understand what we are dealing with and going through, but one thing I can tell you is that I am grateful that they don't, because it means they aren't suffering with Chiari and Syringomyelia as well. I don't wish this upon anyone. I may forget to be grateful in the moments that I feel as though I am being questioned, or not cared about, but in the end I can't play the blame game. It isn't fair. Could someone validly blame me for having Chairi and Syringomyelia? The answer is no, because it is not my fault, just like not being able to understand our pain and struggles is the fault of our loved ones. We take it personal sometimes, and we are hurt by it, but we need to step back and look at the big picture. I watched my grandfather suffer from several types of terminal cancer. He withered away into a frail man but manitained such great strength until the very end. Do I understand what he went through? Absolutely not and I believe he would be grateful for that.

Self confession

It has been a year since I last blogged. In the beginning my reasons for not blogging was I had appts, no energy, was in too pain and the list goes on. These same reasons became excuses. I still have a constant schedule of appts, always suffer from extreme pain which causes a lack of sleep and therefore a lack of energy. We adopted Parker (our Jack Russell) last May, which gave me another reason to avoid writing about my lack of recovery.

I now realize that I was avoiding continuing my blog because writing that my recovery is considered non-successful makes it more real. I have been able to talk about it with others but talking about it is very different than writing it. For example, my employer has us create development plans every year and submit them. If we simply talked about our goals, they can easily be ignored. However, if they are written down, we must face them.

In the past year I have seen countless Drs for 2nd, 3rd, 4th, 5th opinions, hoping someone would say the magic words of "we know why you are experiencing this pain and it's going to go away." I couldn't accept the "I don't know" "This is your new normal and it's never going to go away" "The reason why doesn't matter, the plan to handle it does" The reason doesn't matter???? How could it not matter??? Isn't finding the reason the key to the proper pain management plan?? If they don't know why, how can they say it's forever???


The last Dr opinion I received was hard to take but at least I got an explanation. My pain is caused by Myofascial Chronic Pain disorder, a straight neck (instead of naturally curved), buldging/dehydrated discs and anular tear in my neck, and the damage that Syringomyelia does to the central nervous system.  I am learning to accept this and try to be thankful that at least I finally got an explanation. When you are healthy, you take little things like that for granted, when you aren't, you beg for the simple things in life.

I am sure some of you can relate to this post, whether you have Chiari or Syringomyelia or something else that changed your life forever. I believe in miracles and healing, but this will forever change my life, regardless of how I feel on any level. Chiari and Syringomyelia do not define me but they certainly affect every aspect of my life. It is how I adapt and find my new normal, that makes the real difference in my recovery. 

Surgery Time... EEP!!!!

My plan was to get a good sleep the night before the surgery... HAHAHA That plan was about as realistic as unicorns!! My mom was picking us up at 5am so I went to bed at 9pm ish... Wide awake and a million thoughts running through my head, I did not fall asleep until about 3:30am. Surgery is certainly srtessful for anyone, but I was about to have part of my cranium removed, my brain exposed and moved, a patch of my dura (the membrane around the brain) removed, somme artificial something-or-other put in my head to replace the dura removed.. oh yeah & my C1 vertebrae removed... to top that off, we were advised that there was a chance of menegitis or I could wake up a paraplegic! Nothing to worry about at all! lol

It was probably a blessing that I didnt get much sleep the night before. I was too tired to be nervous at first. Neal took a picture of my hair and me prior to leaving at 5am. My mom cracked jokes the whole way to the hospital. I know she was trying to take Neal & my minds off of what was about to come, but I also think she did it to help herself too, afterall I am her daughter and I'm sure its stressful for her too.

When we arrived, they prepped me for surgery. Since I was alone during this, I suddenly had time to think about what I was about to face. I was especially nervous about being intabated. I had a fear of waking up during the surgery too! Thank you producers of the movie Awake!! My mom & Neal joined me once I was prepped. I couldnt take my eyes off the clock. I think I watched every minute pass for half an hour. I think I was hoping that somehow time would miraculously stop lol. Finally the porter came & I begged for my mom & Neal to be allowed to come with me. The porter was wonderful! He made the exception and even "hid" me in the OR waiting area until they were ready for me hehe. This allowed a good amount of time with my mom & Neal. At one point, I wondered if he hid me too well and maybe they forgot about me lol. While we were waiting in this area, my nerves kicked into high gear. I knew there was no turning back, but I didnt want to go through with it. I tried to keep a brave face, but Neal could see right through me. My mom gave us some time alone & this is when I really broke down. Sorry, but I cant share this moment with you as I feel it was a special moment between Neal & I, I will share that it was really encouraging and I knew everything would be ok. Finally the time for me to go came. I said goodbye and off I went. My surgeon, the anesthesiologist and approx 4 nurses met me inside the OR. I remember seeing the weird looking table they would transfer me to (I had to be face down for the surgery, so it wasnt your typical bed) and the nurses prepping everything like busy bees, my surgeon smiled and cracked a joke, and then I was given an IV. Next thing I knew, I was being told some med was being given & it would feel cold.. yep it was... then I was given the anesthetic and I was out cold! The surgery was 4 hrs long. I woke up about 5 hrs later in PACU.

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. 

The emotional process

Always feeling like something is wrong & finding out something will always be wrong are very different from each other. Never feeling 100% was was awful but knowing I can never be 100% is well, emotionally straining.

Chiari doesn't just affect your brain, it affects your body, your emotions, your life. Sometimes you wonder if you are crazy because the doctors, friends and sometimes even family look at you like you could be. You can easily feel all alone. From the outside, you look completely normal. On the inside, you are miles away from normal.

The only thing that keeps you going is the strength of those who truly love you and your own determination and faith. There are many emotional steps one goes through from the time symptoms start appearing to recovering from major surgery. Most likely, it will be never-ending.

When symptoms first start appearing, there is confusion and concern. Due to the lack of knowledge of Chiari, the number of symptoms, and how differently the symptoms can affect someone, it is easy to be misdiagnosed. This leads to incorrect treatments, if any are given at all. Misdiagnosis can lead to frustration. Eventually, Chiari is properly diagnosed, but it can take months if you are fortunate, otherwise years. Once you are diagnosed, shock and fear kick in. You are mentally paralyzed. Frantically, you begin to research what it all means. Once all research avenues have been exhausted, acceptance starts to set in. However it is never accepted 100%. You see, learning about Chiari is learning life-long limitations. No one like limitations.

Once you accept being a Chairian, you can begin to move forward and live again. While most surgeons won't provide any treatment for just Chiari, they will when Syringomyelia is present as well. It is a cavity in the spinal cord, in which CSF is pooling. This can lead to physical paralization. Surgical treatment for Chairi and Syringomyelia is Posterior Fossa Decompression with C1 laminectomy and duraplasty.There are zero guarantees this treatment will change anything, but it provides hope. Hope for improvement in quality of life. Thankfully for most Chairians, the surgery is a success and the symptoms are either reduced or completely gone. The limitations are never gone, but the quality of life improves.

Hi ho, hi ho, it's off to the surgeon I go!

It didn't take long for me to get an appointment to meet my surgeon. About 3 months or so... in the medical world, that's not long at all lol. Unfortunately I didnt get to meet him first, instead I met a scrawny little resident who almost went flying across the room!! He was about half my size so I knew I could take him! (That's if my mom didnt get to him first haha.) He made me feel like I was starting at square one again, questioning if my symptoms really were true or not. The scrawny pip-squeak tried to tell me that my eyes were the problem... I really had to hold myself back from letting him feel the wrath of The Jenny! Apparently he knew more than my Neurologist.. his simple "touch your nose, then my finger as fast as you can" game told him the true problem and the MRI lied... HA! He also decided to fill out the medical questionnaire based on his own thoughts. My piercings magically didnt exist and I never had any minor surgeries before... I couldn't help but cringe at the fact that this guy could someday be a doctor!

When my surgeon finally walked into the room, he confirmed the MRI results and requested yet another MRI. (Take that little resident man!) This one was to be an hour long and it's purpose was to show the flow (or lack of) of the spinal fluid through my spinal cord and brain. Now, I am very clastraphobic and had a difficult time with the first MRI which was only 20 mins, so you can imagine how I felt when I was told it ws going to be 1 hour long... yep I freaked!!! How was I going to handle laying perfectly still for 1 hour long and not freak out in there? See the first time, I did a really stupid thing: I opened my eyes.. never open your eyes! After 10 minutes, I wanted out of there so bad, but I knew I had to stay in there. This time, I brought a facecloth with me and put it over my eyes. That way I could open them if, for some reason, I decided to and I wouldnt know how close the machine was to my face. It actually worked well! Unfortunately the earphone over my left ear had a plastic part that dug into me. The tech did not listen to me, nor did he help me. He didnt give me my button to even get his attention. Instead, he yelled at me for moving and blamed me for the issue. I reported him!! His boss was not happy at all!

Finally I got the results of the test in October.. they found a syrinx in my spinal cord. It is caused by the lack of flow, which results in the fluid pooling in the spinal tube. Eventually this could (and usually does) lead to paralyzation. Ther is permenant damage because of the syrinx. This is the moment I knew I definitely had to go for the surgery. I met a surgeon from CHEO who was consulting me on behalf of my surgeon. An hour and a half later, I completely understood what was happening to my body and mind. This is the reason for my numbness and pain in my limbs and it wasnt going to go away. I will eventually have to have another MRI to determine if it is shrinking and the fluid is flowing again. It can take up to a year for it to shrink.

I wanted to have the surgery in May as it would be nicer weather and I would have a bit better coverage through my insurance. However I was told I couldnt wait. While the surgery is classified as "Elective", I was considered "urgent". They wanted the procedure done prior to 3 months. I signed the consent forms that day. My next step was to call his receptionist the following day and see when I could be scheduled for.