Background to My Journey...

Background
I have been putting off writing this background post for several months, until I read a post from a 31 year old on the Chiari Facebook support group who said he was told by doctors he had 10 to 14 year left. THAT was very sobering to me…I never thought of asking because I didn't want to know, yet I knew the rest of my time was limited. If I wanted to tell my story then I could not put it off any longer…it’s hard, it’s painful but I simply can’t put it off any longer.


I worked at a not-for-profit in NYC for over 20 years. I was very successful and increased an annual budget of under $500,000 to over $20,000,000.


I met Steve in the summer of 2002 and we were married in the fall of 2004. I became a step-mom to a wonderful, good nature six year old boy. In 2006 I was pregnant with our first child and 4 months into the pregnancy I had a miscarriage.


I can’t say for sure when I started having weird, unexplained symptoms but after a second miscarriage (at 5 months) in January 2008 I noticed that I had difficulty lifting my right arm above my head. I would feel deathly ill but couldn't pinpoint why. I saw chiropractors and finally a physical therapist (PT). I saw the PT for a few months without any success. I also had 'mind boggling' pain on my right shoulder and my neck.
My PT even did acupuncture and it didn't help one bit. She finally sat me down and said the pain and weakness does not add-up in relation to my age and she penned a note to my doctor to request that he order an MRI of my brain; Which he did.


My doctor refused to tell me the findings of the MRI over the phone in August of 2008. When I went in to see the doctor she had a print-out from Google for me and commenced to explain Chiari Malformation.
It was great to finally know what was wrong with me but it was terrifying to enter this unknown. I really could not believe this was actually happening to me!!!
My doctor recommended a neurosurgeon in NYC and we went to see him. He told me my options as he saw them. I would need at least two brain surgeries.


Most people go through their entire lives without major symptoms...but I wasn't one of those people. Chiari is hard to diagnose because symptoms mimic regular day to day illnesses such as headache, migraine, allergies.


Most of my immediate family live in Maryland and my sister suggested that I call and send my MRI report to the world famous Johns Hopkins Hospital in Baltimore, Maryland. Hopkins told me they do not normally respond before 3 - 6 weeks. I sent the report on a Friday and by Monday I got a call that I should come in to see them asap. I thought …oh no!! I must be dying??!!


Based on the MRI report the doctors couldn't believe I was still standing and moving around!
Needless to say I went through tons of tests and evaluation. I was told that I was one of the worse case they had seen. I had lost 80% of the nerve function in my right arm and 50% in the left.


Surgery was scheduled for September 23, 2008. In one year I had to deal with a miscarriage and a brain surgery. The decompression surgery would last about 7 -8 hours and I would be woken during the surgery. Luckily I don't remember it! My doctor was Dr. Judy Huang and she was the best! I had total confidence in her and believe me that helps a lot.


A day or two before my surgery I had news that a huge contract I worked on for my agency was approved and that means I would now head the largest agency of it’s kind in NYC! That was awesome news! But I still thought why couldn't this have happened when I was well??!! Why am I sick NOW!!!


During my ore-op MRI the technician told me that they thought the machine had broken because they had never seen so much fluid on the brain/spine before mine. That was “comforting” to hear only days before surgery.

I tried to keep a positive attitude but it was increasingly hard. My husband is very supportive, but no one could quite still the fear I had.
The night before surgery, I barely slept and was up at 4 or 5 am for the trip to the hospital.


When I woke up in ICU the first thing I thought was: “I made it!”
The next night I watched with my husband the first Presidential debate with Obama and McCain from my hospital bed. I love politics and had even thought I would run for elected office someday.
The Presidential election and SNL coverage of it was a great source of distraction as I recovered during the fall of 2008.



I had to stay close to the hospital for up to 6 - 8 weeks just in case there were complications.
At home I had to be taken to and from the bathroom and I couldn't find comfort in a bed and slept in a reclining chair. I had to be helped in the shower and with everything I did.
My husband kept up with my meds at night, my brother took care of my breakfast. To give my husband a few hours break in the day we had a nurse. She helped me with personal care, showers, meals etc.
Less than a week after surgery I was sent to have PT. Mainly so that today I have some mobility on my neck. Back then I thought it was “cruel and unusual punishment”


One day I thought I was strong and could do more so I went to the park with my husband and we walked a bit. I remember hearing a brook and the sound of the water was so calming, I wanted to see it. My husband cautioned me that I had to remember that I had to walk back too…I was determined and pressed on…On the way back I was so exhausted and sleepy I barely remember getting back and into bed. I slept for over 4 hours!!


I went back to work briefly in December 2008 – Board meeting and meetings for the newly won contract which was slated to begin February 2009.
I officially went back to work in January 2009. I was still very weak, but it was a good distraction – I was in the office several times per month and attended all meeting and worked from home other times.


I had to go in to Hopkins every 3 months for MRI and soon it was time to discuss my next surgery – To relieve the pressure on my brain caused by excessive fluids OR to fix the discs on my spine. The spine doctor at Hopkins called me and told me that he didn't think the pain I was still experiencing on my neck and shoulder was due to the spinal issues but that he believed I should consult with neurosurgeon Dr. Daniele Rigamonti about the fluid on my brain - Hydrocephalus.


Dr Rigamonti wanted to discuss my case with others at Hopkins to determine the best method for me – opening the ventricles OR the dreaded shunt). After what seems like an eternity (about 3 -4 weeks) the doctor called to say that he had decided on opening the ventricles. Surgery was set for August 6, 2009 ( less than a year after my first surgery).


Although I had every confidence in Dr Rigamonti I was not confident that I was strong enough to survive another brain surgery and that worried me a lot!


After 3+ hours of surgery I was awake in ICU and I actually felt good. It took me a while to realize that the horrible 24x7 pain I had in my neck wasn't there….then I was afraid to acknowledge it to anyone for fear that it would come back.


Today, I still have intense pain 24x7 on my back, shoulders, right side of my body and new pain on my left side (2012), the neck pain only comes on periodically and that is a huge relief!
I cope better today because most of the nuisances are more familiar to me. I still become frustrated when my mind says “I can” but my body doesn't cooperate.


A few weeks ago my husband and I went to the cemetery with flowers and we were able to talk about how old the girls would be and what they would be like. I am able to now talk about them without getting too emotional.

So, follow me on this Journey of mine...