Wednesday, January 9, 2013


There's so much that I need to say and I want to say, but some things are better kept to oneself.  So instead of ranting and raving and being angry, I want to do something helpful, informative and maybe even educational to some.  Let's start with a brief synopsis.

My childhood and teens:
I grew up in a traditional family.  Mum, dad, 1 older brother, a cat and a dog.  No, sorry, no white picket fence.  As long as I can remember I had problems with a stiff neck - sometimes, not all the time, and headaches.  I remember leaving skating lessons and resting my head on the window of the truck while my mum ran into the pharmacy for something to help my head.  I remember vomiting in the back yard because of pain in my neck.  I remember periods of time where I couldn't keep my head up straight.  I remember being driven by a school counsellor to emergency because my head was exploding with pain, I could not see or speak or think.  But all in all I had a normal childhood.  Chicken pox, the occasional fever and cold, tonsillitis and strep throat once or twice followed by horrible banana flavoured medicine (yech!!) Had my wisdom teeth taken out. Learned to drive.  Nothing out of the ordinary really. I was diagnosed with migraines at the age of 14.  I was sent for a  3.5 hour drive south of my hometown to another city across the border for an MRI when I was 18 (before we had an MRI here).  I was diagnosed with an arachnoid cyst on the frontal portion of my brain.  As arachnoid cysts are very common and mine was stable, nothing has ever been done to it except monitoring.  No rhyme nor reason for the headaches so the blanket diagnosis of migraines.

My 20's:
Fast forward... high school behind me I entered university.  I remember having headaches, but nothing especially significant.  I was an active person - roller blading, skiing, cycling, tennis, aerobics, aquabics.  And I was a 20 year old.  Dating, bars, all-nighters, parties and road trips on spring break and summer vacation.  I worked through-out high school and university at a variety of jobs - fast food, retail, wholesale, government and public utilities.  I remember having to call in sick to work at times because I was not able to manage through a headache.  I also found out I was allergic to codeine as I was given it with Tylonel 3's for a headache once... bad, just bad.  I finished university and met my true love, my best friend, my husband just a few days after graduation.  Hubby (boy friend at the time) and I got our own place together.  I got my first and then my second real jobs.  I remember calling my grandparents to drive me from work to emerg because of headaches at least twice.  I had a couple of shoulder surgeries for a torn rotator cuff, one for an ectopic pregnancy and one foot surgery.  We bought a house.  Hubby bought a motorcycle.  My life wasn't revolving around headaches or neck pain thankfully. It was there, but it didn't consume me.

Age 30:
OMG I was getting married!!  So excited, so stressed, so sick!!  I dropped 40 lbs because I couldn't eat. And I had headaches for weeks at a time. I was so stressed the docs ran a battery of tests.  Nothing conclusive. Just a suggestion - time for a career change.  I bought a motorcycle. We got married.  We went riding together and I'd turn my head in the helmet and searing sharp pain would shoot through my neck into my head.  I didn't think anything of it.  I had headaches, but attributed it all the stress I was under at work. Another foot surgery and 11 weeks on crutches (double yech!).  We went on our honeymoon, and I sprained my neck getting off a roller coaster. (Yes, getting off the coaster, not during the ride) Home after the honeymoon x-rays didn't show anything but a neck strain - muscle relaxants, heat and rest.  I started going for physio and was recommended massage therapy.  I still see the same massage therapist to this day. 

Age 31:
Headaches were trying to consume what little life I had outside of my life at work.  Work, headache, home, bed. I tried a chiropractor to help with the neck pain. I'd leave with a headache. I kept going to aerobics and aquabics.  If I worked out too hard, I had a headache instantly.  Nothing helped.  I ended up in emergency more than once.  Finally one ER doc decided to send me to a pain management clinic.  More meds that I couldn't tolerate and finally one that I could - Maxalt! A CT scan only showed the arachnoid cyst.  Nothing had really changed except the intensity of the headaches.  I started writing in my journal that it felt like someone was pulling my brain down into my spine.  I bought my first ever brand-spanky-new vehicle.  I finally caught a break in the job hunt and moved to a new career.  I was ultra stressed with the career change and ended up with shingles.  But the change was for the better, much better. My bosses were sympathetic to my headaches and allowed me to work additional hours to make up the time I missed.  Both are migraine sufferers and understood the pain I was in.

Age 32:
I was enjoying my new career despite the stress and headaches.  It is a different type of stress than what I was used to. I was learning and excelling and loving it.  I started teaching the aquabics class I had been taking.  But after every class I'd have a headache, if I didn't have one when I got there.  We rode our motorcycles in the summer and did short weekend trips a couple times through-out the year.  We worked on home renovations.  I had headaches and neck pain, but attributed it to the sprain, now over a year old.  I continued going for massage therapy.  Life kept moving forward.

Age 33:
Life was about to throw me a couple of curve-balls.  It threw my hubby's family the biggest curve ball...  My father-in-law was diagnosed with terminal cancer.  I was extremely close to dad.  He passed away quietly, with dignity, on his own terms just 11 weeks after being diagnosed.  I love you and miss you dad!  I'd been back and forth to docs and emergency because of headaches, and tinnitus that had been driving me out of my mind.  My headaches were getting worse and worse. Add to the neck pain, facial numbness, left side numbness, trouble speaking, seeing and thinking, insomnia, trouble swallowing, choking on liquids, and the tinnitus.  I ended up seeing an ENT who ordered an MRI for the tinnitus, suspecting a brain aneurysm... thankfully no aneurysm.  Instead, a diagnosis of Type 1 Chiari Malformation with a herniation of approximately 8mm of my cerebral tonsils into my C1 vertebra.  And a trip to the local neurosurgeon to be told that brain surgery was the only solution to alleviate the ongoing headaches and symptoms I was experiencing. Everything happening within a couple weeks.  It was a whirl-wind.  And an information overload!  I had no idea what to do.  The NS told me to go home and think about my quality of life and decide when I wanted to proceed with surgery.  Surgery for Chiari malformation is elective unless there are complications such as hydrocephalus or syrinx. I sought the advice of family and friends.  I talked to my family doc.  I spent hours and hours on research looking for doctors and fellow Chiarians who understood what I was going through.  I sent off my MRI to the Wisconsin Chiari Institute and also had a referral to Toronto Western Hospital.  WCI's doctor recommended the same as the local NS - definitely a good candidate for surgery.  The same was said by the TWH NS.  I had a huge decision to make.  I came home from TWH to evaluate my symptoms and my quality of life and to decide if and when I wanted to have the surgery. I’d kept a journal for over 5 years, not for the symptoms, but the symptoms ironically were the topic many, many times over. Shortly into the new year 2010 I decided to contact the TWH NS and book surgery.  As with all elective surgery, there was a waiting list.  During my 6 months wait I spiraled downward into an existence of pain, pain and more pain.  My headaches lasted as long as 44 days at time.  I was literally carried into the ER.  I was given drug after drug that either didn't work at all or that cause adverse reactions.  I emailed my NS week after week begging to be moved up on the priority list.  Each time I was told that it would just be a little longer.  And then my grandmother fell ill... very ill.  I spent day after day with her in ICU and then the ward and then the rehab hospital as she started to regain strength and recover.

Age 34:
The year that changed life as I knew it.  I celebrated my 34th birthday at home with my close family, all the while missing my grandmother who lay in the rehab hospital.  I took her up some cake the next day.  Each time I saw her she seemed a little better physically, but somehow a little older, a little more slowed in her activities. She was finally cleared to go home in just a few days. I had a miserable headache and left work early one afternoon and popped up to see her.  She looked wonderful.  Tired, but dressed for the spring weather, sitting in a wheelchair.  She'd been out to get some fresh air.  It was the best day.  The next morning I got the phone call.  She was gone.  And a little piece of me died that day.  I thought my head would explode and my heart would simply stop beating because it hurt so much.  I was crushed.  I only ever had one set of grandparents to love, so I always told my grandma that I loved her double.  I took the week off of work and during that week I phoned the NS' office.  A little more disappointment that I couldn't have my surgery in June wouldn't dampen my already crushed spirit... but to my surprise, I had a surgery date.  

June 22 to 30, 2010:
I checked into TWH for posterior fossa decompression for Chiari malformation.  Just to make it easier, I will refer you back to this post about my Pre-Admission and Surgery day... and my Post-op and NICU post... and finally my stay in Ward 5B Neurology.  My surgery went well with no infections, no CSF leaks and only one complication... my right arm wasn't working properly.

Want to know what a posterior fossa decompression entails??  It is multiple surgeries all wrapped in one 5.5 hour visit to the OR.  A craniectomy - a hole is drill in the back of the skull to relieve pressure on the brain and return the CSF flow to normal.  The piece of bone is permanently removed to create space for the cerebral tonsils and the CSF. A laminectomy - the lamina (horns) of the first vertebra was removed.  Duraplasty - the reclosing of the covering of the brain with another soft tissue material. In my case I had the dura patch from my own thigh tissue (fascia).  The process is explained in more detail here.  I do not have full details of what my surgery involved as my NS did not do a full report.  I can only go off of my notes from my follow-up visits. 

What is the difference between skull surgery and brain surgery you ask?  In brain surgery the dura is opened, in this case, to inspect the cerebral tonsils and remove arachnoid tissue, check CSF flow and determine if there has been any tissue death (necrosis) due to the compression of the cerebral tonsils.  In skull surgery only bones of the head are operated on and there is no intervention into the dura covering the brain.  Decompression surgery for Chiari malformation is not a cure.  It is done to help slow the progression of major symptoms.  As for symptoms, there are over 100 symptoms. Without surgery these symptoms simply progress as the cerebral tonsils are compressed by the skull.  Complications of Chiari can lead to death.

July 2010:
While I had realized that my arm wasn't working well while I was still in the hospital (I couldn’t lift a fork), it took a little longer to determine that the pain and the inability to move my shoulder was more than just post-operative stiffness.  A trip to my family doc saw a referral for an MRI and to the orthopaedic surgeon.  It was suspected at the time that I had re-torn my rotator cuff.  There wasn't anything to do but wait for the appointments.  In the meantime I focused on walking and getting stronger from the decompression surgery.

September through December 2010:
I couldn't take the shoulder / arm pain, numbness and inability to move any more.  I went and sat in emergency until I was seen by the er doc who referred me to the orthopaedic surgeon I was waiting to see.  Being seen through emerg got me into see her within a few days.  If I had to wait for the referral from my doc, it was an 18 month wait.  The orthopaedic did suspect I had a torn rotator cuff and we waited for MRI results.  Once the results were in, no tears in the shoulder.  The old repairs both look great and stable.  No mechanical reason for the extreme pain.  I was referred to physio to get my shoulder moving again.  The physio I started with was very new to the profession and was very thorough. Day after day of passive movement by the physio and lots of work myself at home got my shoulder moving again.  Having recovered from 2 shoulder surgeries, I knew it was going to be hard work, and it was.  The hardest thing was getting my hand to co-operate again and hold a pen and type on a keyboard. Physio and I worked hard to find the source of my pain.  All this time I was unable to perform many day to day activities such as lifting or carrying bags, purses, groceries, laundry.  If I had to apply pressure using my right arm it was excruciating.  Physio started testing for nerve impingements through a variety of assessments and positioning exercises.  She suspected that the pain, weakness and numbness was not mechanical but neurological - brachial neuritis - there was something going on with the nerves controlling my right arm.  Only problem was, this was far beyond her scope of knowledge and treatment abilities.  I was sent back to the orthopaedic who prescribed a wrist splint to assist with writing and typing and concurred that the problem could be neurological.  And being a non-mechanical problem I was discharged from the orthopaedic and from physio with no one to turn to for assistance or answers.  Family doc referred me for an EMG and a nerve study at TWH and I waited for that appointment to come in January.  I returned to work on a part time basis early December and struggled to perform some of my daily tasks, especially those involving moving or lifting the files and documents I use in my job.

January 2011:
I underwent a very painful EMG and nerve conduction study at TWH.  The TWH neurologist did not test for everything he suspected (why not??!!), but made note on the same.  According to his report, he found no permanent nerve damage to the radial nerve however did not test for brachial neuritis, but suspected that is what I have.  It would be months before I received this "suspected" diagnosis.  When my family doc read the report he only commented on the lack of findings.  He missed the last paragraph.

February - May 2011:
Left without a physio or the orthopaedic surgeon I was on my own with my arm pain.  I continued to heal from the decompression surgery, but my arm pain was more prominent.  I'd be in tears at the office just trying to cope.  One of my co-workers suggested I try and see her physio - the guy has to be good, doctors go see him when they need physio.  And my massage therapist talked me into seeing her Dr. of Traditional Chinese Medicine.  My family doc tried to help me, but not knowing where to turn he put a referral out to a local neurologist.  I went from having barely any medical support to buckets of it in a short period.  The DTCM read my MRI and EMG study.  She pointed out the possibility of the brachial neuritis and questioned why THW NL did not test for it.  Same with the new physio - if I was already there and that is what the NL suspected, why not test for it!  And finally the local NL asked the same thing.  During my initial consult with the local NL came a eureka moment.  She asked if I had scapular winging when I first experienced the arm / shoulder symptoms.  Heck yes!! I couldn't get my shoulder blade to rest flat until almost a year after surgery without the help of being taped at new physio for weeks at a time.  After reviewing the TWH NL's report and that almost forgotten last paragraph, together with her physical findings, I finally had the firm diagnosis of brachial neuritis / neuroplexitis. (Want to know more?? Click here!)  Now, what to do about it?  Almost a year had already passed and most BN recovery takes place within 6 to 8 months of onset (I'm guessing with proper care that is).  Full recovery can take up to 2 years. We continued with the physio, massage and Chinese medicine treatments and started me on Lyrica.  The first dose of Lyrica knocked me flat on my butt.  Literally I could not get out of bed.  We lowered the dose and I tried managing on that for a while.  The same day as I saw the local NL for the first time we also picked up our first puppy Sophie.  Ever experience love at first sight?  We did.  She was this little wee bundle of greyness, so soft and velvety that you never wanted to put her down.  She was and still is a snuggler.  She loves to lie with her head in your lap or on your shoulder.  And she's great at keeping me warm!

June to December 2011:
The Lyrica wasn't working.  All it was doing was keeping me in a drug-induced fog.  I couldn't think straight, I wasn't sleeping much (well, puppy up every night 1 or 2 times didn't help), and I was having more and more headaches.  I was at the same time trying to increase me hours at work to comply with the return to work order from the insurer.  With every incremental increase my symptoms also increased and new symptoms came to light.  After an 8 hour or longer optic migraine where I could not see more than light and shadow or speak enough to alert the hubby that something was wrong, I was back in the ER.  CT showed nothing.  A quick call to the local NL and I was into her office within a day or so and waiting on an MRI to check if I had had a stroke.  Most of my optic migraines only last about an hour and I have never lost all of my vision to this degree.  This worried the local NL.  Because of the Chiari malformation, the incidence and risk of stroke is slightly higher - about 5%.  She was covering all possible causes.  No sign of a stroke, thank heavens!  She attributed my symptoms to being overworked, stressed and over tired.  She suggested that I reduce my hours back to 5 per day.  And she was keeping close watch on my symptoms both with my arm and with my brain. A few more weeks of working at 5 hours a day and another follow-up with the NL and family doc saw my work hours decrease down to 4 a day.  I was not doing well at all with the 5 hours per day.  The symptoms were phenomenal and the pain was out of control.  I persevered as I thought either I would get used to it or that it would simply disappear.  Turns out that I was doing more damage by pushing myself.

January to April 2012:
I continued working my 4 hours a day, but my symptoms kept getting worse and worse.  The harder I pushed the harder my symptoms pushed back.  I was in tears daily because of the pain.  Work was overwhelming me.  I would leave each day feeling tremendously guilty that I couldn’t work full time and that there were files still to manage on my desk.  Even with someone hired to help with the more physical aspects of my job I couldn’t do it.  My trial run at returning to the pool for just water walking had to end as I could not tolerate the feeling of the water on my right arm. At a follow-up with the local NL in April she took me off work.  I didn’t know what I felt worse about – the shape my body and mind were in or the fact I was letting down my bosses with virtually no notice. 

May to August 2012:
I spent almost 4 months at home.  I was told to rest, rest and rest.  No lifting, no carrying, no gardening, no, no, no, no…. lots of recommended limitations.  Lots of time with heat packs, TENS machine, physio, massage and Chinese medicine treatments. Lots of short naps as I wasn't sleeping at night. I went for an independent medical evaluation in TO.  The IME NL concurred with all of local NL's findings and opinions.  He was able to concretely determine that the brachial neuritis occurred at the time of my decompression surgery.  With just simple manipulation he could trigger severe nerve reactions.  He did not recommend I ever return to work full time.  He even asked if I wanted to work, which I do.  He was concerned that now 2 years after onset of the BN that the condition was permanent.  Because I want to work and we came to the arrangement to continue (or rather return) to work on a part time basis.  No more than 4 hours a day.  IME NL did not want to learn that I was pushed too hard to work full time and exhibited stroke-like symptoms, increased nerve pain, or worse.  Once the report was back it was off to see local NL again.  She decided to try yet one last prescription medication to calm the nerves down, with nearly disastrous results.  It made me crazy.  I thought I was losing my mind.  Nix that med too.  Every 6 to 8 weeks I was back at the local NL for reassessment.  Each time I was told a couple weeks more, much to my insurer's dislike. I was told to keep my hands and fingers moving with a few crafts but not too much.  An hour a day, tops.  I read a lot – something like 14 books.  I sat outside with Sophie and then also with Titan, our little boy, Sophie’s half brother who came to us in early May.  I couldn’t walk my dogs.  I sold my motorcycle knowing that it was unsafe for me to ride in my physical state.  I couldn’t carry things heavier than my purse.  I wasn’t able to go for groceries on my own as I couldn’t even push the cart.  It was a quiet summer.  I was allowed to return to work in mid August 3 days a week, progressing up to 4 hours a day.

September 2012 to January 2013:
I had another MRI (number 34? 36? lost count! I should start to glow in the dark any time now), this time of my brachial plexus, with inconclusive results.  There is nothing indicative of compression on the nerve bundle.  I was referred to a pain treatment centre out of town (still waiting for that appointment - there is a 9 month waiting list). I continued working 4 hours a day, 3 days a week.  My bosses are very happy I am back, but it is still difficult for me to do all of my tasks.  I push very hard while I am at the office and forget my limitations.  Then I come home with my arm weighing heavily at my side.  The pain and numbness never completely disappear.  One wrong move, a stretch, a reach, a lift of something awkwardly, and I am instantly reminded about the pain.  At this point there is little more the docs can do, save a nerve block, which are not done locally.  I continue with acupuncture and Chinese medicine, massage and physio treatments to get me through. I see the local NL again mid-January.  What's next?? I really, really have no idea.

In Brief: (finally!)

I am my own worst enemy at times.  I forget that extra efforts result in extra pain.  And not just the brachial neuritis.  Just because I had decompression surgery does not mean I am free of Chiari.  Some days are bad.  Some days are good.  And then I still have some days where I am brought back to a time before surgery where I am engulfed in pain, wishing I had never had surgery because at that moment it did not seem like it had done any good.  But overall, surgery was my saving grace.  Without it I cannot imagine the amount of pain I would be in. If I had to, I would do it all over again, even with all of the  nerve complications.

I struggle to not do the things I have been told not to - housework like vacuuming, washing windows / walls, shovelling snow, carrying shopping bags, files and documents at work etc.  Why? Because I WANT to be able to do these things. I WANT to have my old life back.  I WANT to do what I used to do!  I want to ride a motorcycle, go to yoga and the pool.  I want to garden and go grocery shopping without pain.  I want to walk my dogs and throw a tennis ball for them.  I want to be able to work and type and write without pain.  I want to clean my own house without suffering for days after.  I want to do 1,001 other things I used to take for granted.  But that is not the reality. And I am learning to live with my new reality.

I am challenged not only by my limitations but also by ignorance.  There are people who will ask me questions about my Chiari, my surgeries, my brachial neuritis.  There are also people who will not ask questions but take what I say for face value.  And there are those people who come to their own conclusions.  How does the proverb go?  You can please some of the people some of the time.  All of the people some of the time.  Some of the people all of the time.  But you can not please all of the people all of the time.

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