The life of a Chiarian

Playing the blame game is off limits

2012-07-12T01:39:00.003-04:00

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

2012-05-03T09:26:00.003-04:00

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!!!!

2011-04-17T12:22:00.000-04:00

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

2011-03-13T16:00:00.000-04:00

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

2011-03-13T15:47:00.000-04:00

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

2011-02-15T22:31:00.000-05:00

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!

2011-01-01T01:29:00.000-05:00

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.

Excuse me, but it's kinda tight in here..

2010-12-08T18:55:00.000-05:00

After several months of ongoing symptoms, I decided I could not accept the "stress" excuse. Yes, I had a lot going on in my life, at a very fast pace, but I knew that wasn't the reason for what I was feeling.

As the symptoms progressed and new ones arose, I decided to head back to the clinic I was originally seen at. The sent a referral to a Neurologist who never called. I waited 5 weeks to hear about an appt and never did. I understand it can take months to see a specialist, but it doesnt take 5 weeks to open an appt book. In my frustrations of waiting, I cancelled my referral and asked to see a specific Neurologist who had taken care of my step dad when he had a stroke just a month or so previous.

In April 2010, I met the man who was to be my Neurologist. He was tall, with bushy eyebrows and a funny sense of humor. His attire and haircut were out of date, but his personality made me laugh. He instantly knew what I was experiencing was not stress. Within a week, I had an EEG and MRI done.

At the end of May, Neal & I met him at the Queenway Carleton Hospital, where he is the head Neurologist. Neal instantly got a taste of his humor, when Dr Rabinovitch told me a strange guy was following me... it was Neal LOL. He informed us he had a proper diagnosis that would change my life forever.. I had Chiari Malformation and my option for treatment would be surgery. My brain was essentially sitting in my spinal cord because there wasn't room for it to entirely sit on my head...

My referral was sent off to a Neurosurgeon right away and the next chapter was about to begin.....

The path to a misdiagnosis

2010-11-17T08:07:00.000-05:00

As mentioned in my previous post, I was brought to a clinic where they referred me to an ENT specialist... the onset of a major dizzy spell shouted "Inner Ear!" Too bad my brain couldn't shout back "Think again!" So off I went to see the specialist. I spent many days doing one test or another. I even got to wear a beautifully ugly helmet and matching goggles to watch a light go up, down and around a wall! The weirdest test I had was getting warm and cold water flushed into my ears. If a Dr ever suggests this test, I suggest asking for the cold water first. It caused quite a bit of pain, but the warm water felt like a massage to my ear drums.

After feeling like I was living in the crooked kitchen of the Science Museum for a month, all the tests came back negative. I was told it was most likely stress from my job. I believed the Drs as I had only been at my job for 4 months or so, I started right after graduating from college, and I was going through some quite overwhelming training. (I was learning international rules and regulations in terms of air travel) So back to work I went, without being any further ahead. I wasn't told to follow up with anyone or given any counselling as to how to help myself get better.

As the years go by

2010-11-17T07:56:00.000-05:00

In high school, I would get headaches and my knees would give out. After going to a sports clinic to have my knees looked at, I was told I had Patellofemoral Syndrome. Basically, it is when the knee cap does not move properly when you walk. This was from the same Dr who told me nothing was wrong with my hips, yet I was diagnosed with Bursitis???

When I was 18/19 years old, once in a while I would get a shake in my right hand when I would try to take a drink. I put it down to unhealthy living as I was living on my own, working 2 jobs and going out partying. I didnt always eat well or sleep much. To me, that was the logical answer. At 22, I would get bad veritgo in stairwells, especially the ones where you can see between the stairs... I started asking others I worked with if they too experienced this, and they did. I continued getting severe headaches. When Neal & I started dating, I felt so bad for him. I would page him in the middle of the night & begged him to talk me to sleep or tell me it was ok to go to the hospital.. I would take 2 Tylenol 3s and listen to his voice until the sun was almost up.

Let's fast forward....

October 2007, I was sitting at my desk when I suddenly got very dizzy. My eyes played tricks on me as it looked like my computer screen fell over & the stood right again with the blink of my eye. "What the?? What just happened??" Thankfully a friend who sat beside me noticed my reaction and asked if I was ok. She had a supervisor take me to a clinic nearby and this began the long journey of searching for an answer....

It all began 30 years ago

2010-11-13T13:30:00.000-05:00

On August 31st, 1980 a little girl was born 13 weeks early, weighing 2 lbs 2 oz. Being so premature and having such under developed organs, she was placed in an incubator and monitored around the clock. The nurses were forced to restrain her as she would rip the monitors off her little body. she would continually stop breathing and had various complications. Fighting the restraints, she lifted herself off the little mattress so many times, she caused herself a double hernia. They had to operate. She was also given a higher oxygen level than normal, which could causeblindness. Being born so prematurely had many risk factors. However, no one and nothing was going to stop her from surviving, even if she weighed only 1 lb 7oz at one point and her tiny lungs kept giving out.

Oct 31st, her mother arrived at the hospital to visit her, only to be told something bad had happened. Her mother thought she had died, but fortunately that was not the case. The nurse had dropped the baby girl on her head fracturing her tiny skull. Her mother wondered what new complications could arise from this. She already knew there was a great chance of sicknesses, infections, blindness and mental challenges for her daughters future.

At 4 months old, the baby girl had gained enough weight to finally go home. Instead of her birth being her mothers birthday present, as she was due to be born Dec 9th and her mothers birthday is Dec 7th, her final release from the hospital was. While being home did not mean the complications and health risks were gone, it meant a family could finally be together as one. With the aide of her own parents, the mother was able to manage a jaundiced, cholic baby girl, fighting to survive. This mother was her daughters hero. With her determination and undying love, she fought to give her baby the best medical care she could. She went days without sleep, and found the possible during the impossible. The little girls grandfather would walk the streets with her in his arms. She was not much bigger than the size of his hands.

Through Gods grace and my mothers love, I am still alive today.

I often wonder if all of this attributed to being born with Chiari Malformation. Did my skull grow to small because I was born so under developed? Did the skull fracture change the shape of my head, resulting in it to grow the way it did?

I dont think there is enough research on Chiari to say for sure or not. Perhaps in time, there will be an answer. For now, I concentrate on what I can do to help expand the research that has been done.

What is Chiari Malformation and what are the common symptoms??

2010-11-11T10:28:00.000-05:00

The Mayo Clinic defines it as:

Chiari malformation occurs when the section of the skull containing the cerebellum is too small or is deformed, thus putting pressure on and crowding the brain. The lowermost portion, or tonsils, of the cerebellum are displaced into the upper spinal canal. The pediatric form, Chiari II malformation, is always associated with a myelomeningocele. The adult form, Chiari I malformation, results primarily from a small back portion of the skull.
When the cerebellum is pushed into the upper spinal canal, it can interfere with the normal flow of cerebrospinal fluid (CSF) that protects your brain and spinal cord. This impaired circulation of CSF can lead to the blockage of signals transmitted from your brain to your body, or to a buildup of spinal fluid in the brain or spinal cord. Alternatively, the pressure from the cerebellum upon the spinal cord or lower brainstem can cause neurological signs or symptoms.

Some of the symptoms are:

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

Chiari malformation type II
In Chiari malformation type II, a greater amount of tissue protrudes into the spinal canal compared with type I. The signs and symptoms can include those related to a form of spina bifida, called myelomeningocele, that always accompanies Chiari II malformation. In myelomeningocele, the backbone and the spinal canal have not closed properly before birth.

Chiari malformation type III
In one of the most severe types of the condition, Chiari malformation type III, a portion of the lower back part of the brain (cerebellum) or the brainstem extends through an abnormal opening in the back of the skull. This form of Chiari malformation is obvious at birth or by intrauterine ultrasound.

Chiari malformation type IV
In people with the even more severe Chiari malformation type IV, the brain itself has never developed normally. This form is also obvious at birth or by intrauterine ultrasound.

The purpose of my blog

2010-11-11T10:05:00.000-05:00

Welcome to my Blog!

I am hoping to provide a better understanding of what Chiari Malformation is, how it can affect someone and explain my specific journey.

Each Chiarian is different because the condition affects us in different ways. There are approx 85 symptoms in total. Ask any Chiarian what their symptoms are and you will notice a pattern however what affects one person may never affect another.

The beginning of this blog will be more educational than entertaining... The entertaining part will come once I've had my surgery and I'm on the pain meds hahaha

I have lived the beginning of this journey and hope you will join me on the recovery part. I encourage anyone else with Chiari Malformation to follow along and share their experiences as well. The more stories told the greater the unterstanding :-)