Day after Surgery

The only word that comes to mind is oooooooooooooooooooooooooooooooooooouch! Perhaps thats an understatement! It hurt so bad and it was a feeling I had never experienced before. It made my first night in the hospital uncertain. My parents left around 11P.M. and a fantastic nurse, Michelle, stayed close by as she knew I wasn't doing well and was quite queasy! I continued pressing the pain pump every 6 minutes and prayed it would soon be over- Unfortunately that wasn't the case. My pain continued throughout the night into the early AM. I felt quite badly for my very quiet roommate. I was trying to reason with myself that I just had spinal cord surgery and this pain is understandable. As I tried to focus on happy thoughts and tried to meditate, I continually focused back to the pain. Where had I had something similiar? It reminded me of childbirth. The pressure you have when getting ready to push. That extreme pain. Well, like that but worse-It is a different pain that I just can't describe!
I have a medium tolerance to pain~ I know we all heal differently and we all have different circumstances and levels of pain, so for me it just wasnt easy. I just want to say thank you a million times over to the nurse, Michelle. She made sure I was getting my medicine on time as well as helping me feel comfortable and safe during this very scary and uncertain time.

Getting ready for surgery

So there I was- I had done my ICT and I was getting ready for the big day!!! Thursday May 15th,2008- I had been pacing the floor wondering how it will go,will it be super painful,will I become paralyzed...yikes, this is spinal cord surgery!!!! However, I had been waiting for this day forever!!! I had just spent a whole year in traction, I had the CTO jacket and aspen collar and was just plain through with it all. The past month of April, I was faced with many difficulties. One being that my eyesight would go in and out . The pressure was so strong behind my right eye-it had no rhyme or reason-it would just happen, nothing triggered it. Anyway, that was the breaking point,losing my eyesight for a good 30-40 minutes completely black! I was soooooooooooo scared. I called my Doctor (reg physician)and they weren't able to see me and nobody here understands this disease. I felt soooo lost- I just crawled up in a ball and cried. I knew from prior ER visits, the hospital would just shoot me up with morphine. Thats when I knew it was time to make my way to the Chiari Institute. Dr.Bolognese, said it was time. We have done the conservative approach with the collar and physical therapy and it wasn't getting better- perhaps the syrinx was growing. We needed to get it fixed and now- Unfortunately, I couldn't drop everything and run so I made the apt for the next available- May 15th was the day so here it was, I couldn't believe it My mom,Dad and I left our hotel room and off we went to the North Shore University Hospital. It was 5:30 am -As we entered the hospital and meandered through the halls of construction to Same Day Surgery we were surprised to see this room jammed packed of folks. I mean it's 5:30 AM!!!I'm not the only person in NY headed for surgery. I forget that it is possible...seeing I am from a small town in the country!!! 7:00 am came slowly and my Name was called. Finally!!! My mom and I sprung from our seat and made our way down to the lady at the desk- We followed her to a changing room-wouldn't you know it, I had gotten my monthly reminder that yes, I am a woman and I can have kids. The dreaded period. Why didn't men get this curse???well, I asked the nurse how to go about it and she hands me this thing- for god sakes...it looked like a friggen sling shot!!Meanwhile, my wheelchair had arrived and my very nice looking chauffeur looked puzzled? I frantically told him he will have to wait as I needed to make way to the ladies room- I reassured him how lucky he was being a guy. I started to feel my hormones going AWOL. after figuring out the hospital thong... I was wheeled to the hallway where 3 men were waiting. I jumped on the bed and they wheeled me through the unfamiliar maze of very sterile white halls and was greeted 3 minutes later with a team of friendly doctors and their assistants! They wheeled me in and there were lots of tools, lights, table with a face mold type pillow. I looked at the clock and it was 7:35. Next thing I knew I was greeted by the anesthesiologists -She was having a tremendous problem finding a vein so after the 3rd attempt a man arrived and the 2 were working hard to locate one- Finally after all that I heard do you have any questions before we begin.........my heart started to race with anticipation, I was so embarrassed that they were going to flip me over on to the operating table only to see my fat ass adorned with the freaking sling shot! well, I said no -minutes later I awoke in the ICU-more like 7 hours- I was so out of it but a bit scared as to where I was-my mouth was dry as though I had been in the desert for months without aqua. I just wanted something to drink. To no avail, I closed my eyes and prayed to God that I was going to be ok and I would soon have something to drink. The nurse said to wait, I just had major surgery and I needed to wait- I rolled my eyes to the back of my head- I saw my mom come in at one point and then I was sent to another room in SCU -There I was greeted by my parents- I couldn't move my legs- I started to panic...OMG!! was I paralyzed? Nurses were allover me like flies on shit- "just push this button every 6 min" I just nodded."this will release pain medication." My main thing I didn't want to feel the pain. I was so scared to feel pain-or nausea. All I could do but cry- There was an internal pain that I am unable to describe, apain that burned and lingered. I hated this pain. I would have given birth to 10,oo0 children then to go through this pain. It was frustrating- I wanted to describe it to my parents and the nurse but my words were coming outmore like moaning- so for the whole night my wonderful nurse Michelle stayed close by and helped me thru it all- I couldnt believe I was hurting this bad!

ICT

So here I am getting ready for my ICT exam.... smiles and bunny ears and I even have a slice of heaven, a halo! I actually didnt mind this operation as much as I did my following surgery!! I was so excited as I was going to meet the worlds most incredible Doctor...Dr. Milhorat or so I think( he is grand! )Infact to me ,he is like the Dali Lama. He is a wealth of medical brilliance! Upon meeting him, I had no fear to declare him as my Doctor Lama! I shook his hand with confidence and an air hug through the tubular machines that surround me:) We all had a good laugh and then it was right to Business! I was surrounded in this operating room by a multitude of brilliant Docs, including handsome Dr. Remy, Dr.Milhorat, Dr. Chen to name a few. I wasn't the least bit nervous for them to stretch my neck. I suffer from chiari 1 malformation, syringomyelia and tethered cord syndrome. Chiairi 1 malformation is a serious neurological disorder. Basically your brain stem is herniated and is in the way of normal CSF flow. When it doesn't flow properly, it backs up in to the spinal cord and forms a syrinx..syringomyelia. The spinal cord is tethered and in my case is pulling the brain stem into my spinal canal.
Pretty amazing when you think about it. sooooooooo, basically I might look quite healthy on the outside but boy am I mess on the inside- talk about extreme pain! From head to toe. its like fibromyalgia but times a million! It really hurts and when your spinal fluid doesnt flow correctly and your brain isnt getting the fluid it needs , you begin to fall apart...like in my case.... I had severe migraines,my sight would go intermittingly, my right ear had pulsations on and on it goes. Unfortunately no one was piecing any of this together to form...voila With lots of research and being my own advocate in this rat race of medicine, I was guided to The Chiari Institute in Great Neck NY- Manhassat Long Island!!!
So back to my pic, this is me going in for an ICT. (Invasive cervical traction) Of course we werent allowed to take our cameras in as everything has to be sterile...for god sakes I felt like I was at a concert and busted by security:) But my man Dr.Remy came thru for me and snapped one for me! What happens is, they put you to sleep and they surgically clamp the halo on and insert the pins about an inch over your ear- its a little oowie but no biggie. I knew relief was in sight seeing I had spent the last year practically in traction!! They x-ray your cranium and see if its on the axis point or not. If not they add weight to see if it gives you relief. By adding weight its pulling your head up giving, well, me ..relief! Dr. Milhorat continued to add weight and was intrigued that it took 35 lbs to give me full relief!! usually its 15-20
so Kudos to that great group of Doctors!!!! May 14th,2008 North Shore -You guys rock!