After the urging of my friends in 2005 I went and got a physical because I had shooting pains going up my arm and I had this funky feeling that my whole right hand fell asleep. After an EMG exam and a couple of MRI's I was diagnosed with Chiari Malformation I & Syringomyelia. This diagnosis came 2 weeks before my little sister was to get married so I made the decision to not breathe a word to my family. Of course some friends knew because they were with me when the symptoms began but that was the extent of it.
I found a neurosurgeon on my health insurance's list and he was at NYU Hospital so I immediately made an appointment and found out that it was going to be about a month until I can see him, so I went back to living a normal life. I came back from my sisters wedding and went back to work but decided I had to resign because I was starting to drop things and I was afraid I was either going to hurt myself or someone around me. I met with Dr. Howard Weiner in May 2005 and from that initial meeting it was decided that I needed to have a decompression surgery. That was to be my very first brain surgery. I moved out of my apartment and gave away what I could and just took it easy until June 9th came.
My parents came into town the day before the surgery so they can be with me through it. Who would've thought that every weekend after that for a month that they'll be criss-crossing the country because every infection that can possibly happen happened to me? My Mom stayed in NY while working at the Brooklyn Field Office. Before work she would walk her little butt to the hospital to come visit me and bring me coffee and then come again after she gets off work either before or after dinner.
During all the hospital stays and recovery at the hotel, Mom met a lot of my NY friends and at one point got overwhelmed because she said she couldn't keep track. Mom stayed in the hotel for a total of 6 weeks because like I said, everything that can possibly go wrong happened. First it was my body rejecting the surgical glue, then it was my sutures coming apart, then my body basically just was not cooperating so it allowed infections to affect me. So a month after the first surgery, I was again on my way back to the OR to have my second brain surgery, but this time they used a dura patch. My stay this time was filled with wonderful family visits from majority of my cousins and it made it easier for me to get going and hit the recovery trail.
I was released 5 days after that surgery and I headed off to Allentown, PA to stay with Uncle Manny and his family. My parents felt comfortable leaving me there in the meantime because Auntie Raquel is a nurse by trade. At this point I had a PICC line and I was getting intravenous antibiotic treatment every 8 hours because they still believed that I had some kind of infection but they just couldn't figure out what.
My cousin Mathew who was only 7 years old at the time became my IV manager. He would make sure that he woke me up in the morning to give me my coffee and insert the IV. Who would've thought a 7 year old kid can do that? I had the PICC line for 7 weeks and in the end they still did not figure out what the heck was wrong with me.
June, July and August went by with quite a few bumps on the road and I thought I was good to go after the PICC line was removed and boy was I wrong? Three days after that PICC line was removed I was rushed to St. Luke's Hospital in Allentown, PA for respiratory failure. We thought that me having a hard time breathing was simply because I didn't walk around the house enough. I was placed on complete bed rest and a breathing machine when I got there and placed in an ICU room that had cameras on every damn corner directed at me.
The sun rose and my case was now getting the full attention of the doctors and unbeknown to me the doctors have already told my Auntie Raquel to call my parents because they weren't sure if I was going to make it through the afternoon because they thought I had pulmonary embolism. I was then placed in a clean room which basically means that everyone coming into the room would be wearing a mask. But after having another procedure done called bronchoscopy I was told that I had PCP pneumonia. I was then given the clear to have an ordinary room.
That afternoon, my Dad arrived and basically stayed at my side until I was released two days later. The decision to take my back to CA was then brought to my attention after my release and only after the main doctor at St. Luke's and Auntie Renee in CA spoke. I landed in CA the Sunday before Labor Day 2005. I was so overwhelmed with so much emotion after landing that I lost it in the car. My sister Jill & Milan were with my Mom when they came to pick me up.
There I was thinking things were good but 24 hours later I was rushed into the ER (again) because my headache pain has skyrocketed and my neck did not want to move. I was then admitted and was put on the cardiac floor due to a very low blood pressure that I apparently inherited from my paternal grandmother. I was released 4 days later to a wonderful welcoming party (the Viray's, Auntie Agnes Dizon). I stayed home for almost a day and a half then off I went to the ER again.
But this time I had a fever of 104 degrees and Auntie Renee had me admitted directly. That was when I was introduced to Dr. Lew Disney because the symptoms for my Syringomyelia has manifested itself in my arms which I had completely lost feeling and mobility. It was then discovered the the cyst itself has grown and the spinal surgery can no longer be ignored. I have to say it was one of the most painful surgeries I have ever gone through. An LP Shunt was put in place as well as a titanium mesh w/ 23 screws that took the place of the dura patch.
I was released 5 days later and the recovery road was definitely a bumpy one. I did very well for the next 6 months, enough so that I went and moved back to the east coast. But of course that all changed (again) after I started feeling neck pains and my headaches were back. I went back to Dr. Weiner at NYU and he ordered an Xray of the area and discovered that the shunt that was placed has stopped working. Needless to say another surgery was scheduled to repair the said shunt., this was in May 2006.
Right around the same time I was in the hospital, the moving truck for my parents (they finally made the move to the east) was arriving so I was in the hospital and they were moving into their new house. My parents, thank god were sane enough that they remained calm, cool and collected. They picked me up from NYU 4 days after surgery and I was good to go again (or so I thought).
My Mom then had to of course start her new job since her transfer from the LA Field Division and she had training in Philadelphia so there I go tagging along so I can do the historical tour with the Liberty Bell, Ben Franklin's spot etc. It was during this first couple of weeks that my Mom made up her mind that the next hospital I go to if I had to would be Johns Hopkins Hospital. Apparently her boss' brother got treated there and was fixed up pretty well. I had no plans in going back to the hospital but of course that's not what happened 3 weeks after surgery #4.
We came home on one of our visits to Allentown and I just knew my body was telling me that something was very wrong. So I calmly went about my night, packed a bag, got my stuff ready and when we all woke up the next morning I told them that they needed to take me to Johns Hopkins Hospital in Baltimore. So we all got up and got ready right along with my two baby cousins Jill & Joshua. We went straight to the ER and after getting checked from head to toe with XRay's, CAT scans, MRI's, a full blood panel I was told that they were admitting me.
Two days went by before I met my current neurosurgeon Dr. Jean-Paul Wolinsky. He came in and introduced himself and proceeded to tell me calmly that to make sure everything goes right, he needed to perform the surgery but he needed to take out everything that everyone else did. Not that he was questioning how it was done or anything but he wanted to begin on a clean slate.
He performed another decompression surgery as well as taking out both shunts (I think). Recovery for the 5th surgery was slow but it got me to where I am today. It took awhile for me to convince my parents that I was ok but just like the recovery, they slowly got there.
I then started fulfilling a promise to myself that given the chance I am going to travel and enjoy my life. Because until I was slapped in the face with the reality that everything can be taken away from you at any given time I never really did take the time out to smell the roses as the saying goes. So trust me when I say, I sure as hell am enjoying it now.
