It's Official...

It is official. I scheduled my surgery today for October 24^th, 2014. I go for pre-op testing and consent for treatment on the 6^th of October. I am currently thinking over whether or not I want to seek legal counsel regarding Holzer mis-reading my original MRI. Had I been diagnosed and treated last year, I wouldn't have the memory loss, balance problems, and fine motor skill decrease. I would have had this surgery a year ago and been back to normal. Instead, the MRI was read as normal with no abnormalities other than some sinusitis. According to the surgeon at OSU, it is clearly an abnormal MRI and I have more like significant sinus damage and scarring. I'd hate paying for something they screwed up. I mean if I get shoes only to get them home and they're wrong, I take them back! Or if the waitress brings the wrong food, you send it back. I don't know though, it would be a hassle in the middle of all this.

I was a little nervous about making the appointment because it makes it a little more real and concrete. It's not just an indefinite thing anymore. I actually have a date and goal in sight. I am actually pretty excited that my mom will be staying with me a little. I have found that I love having house guests. Although I will probably be mindless for a while, it's always nice to have mommy there! And I am sure that J will need a break from me!

Now just to get through the next two months! I am somewhat certain that it will go by very quickly and will be crazy full. I'm going to try to get a little done every day to prepare. I realize that I don't NEED to do anything to be “ready.” But there are some things I would like to do beforehand. For instance, I want to get the back bedrooms straightened up and somewhat habitable. I want to clean up the craft room some perhaps later in my recovery I can go in there and do some little things. I want to just have things ready so that others here don't have to worry about it. Maybe I should make a list. So then I can lose the list. Then I can spend time looking for the list before making a new list to lose again. Yep, that's how I roll.

I think the last couple weeks are catching up to me. I am exhausted today and I pray it's just from being busy last week. I am hoping that this doesn't become the new norm. I can't function being this tired everyday, all day. Here's to a good night's sleep and a spunky day tomorrow!!

On a side note, I am sad that I missed my class' 10 year reunion. It was last Saturday but I was just so exhausted I couldn't force myself to go to the store let alone anywhere else. From the looks of it, everyone had a great time though. It was nice to at least see pictures. It reminds me of something our principal, Mr. Edwards said at our high school graduation. He said, “look around at all your classmates. This is the LAST time you will all be in the same place at the same time together.” And that has rung true. Many of us are friends on Facebook and keep up that way, but it's not the same. It'll never be the same. I wish deep down that I had truly treasured those moments. I wish that I had lived the moments to the fullest and not wished a single day away. Instead, I was so focused on the “future,” never realizing that each passing day, the future was becoming the present and the present was ever fleeting. I don't think anyone can ever tell you in a way that you understand to enjoy every moment until they are gone and you can only look back and reminisce.

I am highly anticipating next weekend, for various reasons that I can't yet mention. We have plans with my parents to celebrate their 40^th wedding anniversary. I know it's not 25 or 50, but I think it's a HUGE ordeal. I am hoping that they enjoy everything that we have planned and it goes as I think/hope it will.

Well, I pray that all of you out there in cyber-ville sleep well and enjoy your Thursday. It's the “almost Friday” day, but it is one to cherish all on its own. Every moment is worth reveling in and everyday worth being thankful for. Good or bad, you were blessed to endure it and look at the beauties of the world.

Yet Another Day

Today was a different sort of day. I seem to have a new perspective on things with the idea of surgery lingering. The day went by quicker and I didn't get nearly as stressed by the “pop-ups” in my day (they are exactly what you'd imagine-little things that pop up requiring your attention that you hadn't initially planned. I did however, miss lunch so when I got home, a big bowl of leftover spaghetti really hit the spot! This whole not being able to eat breakfast (it makes me nauseous,) skipping lunch, and having a big ole dinner seems to have aided in losing almost 10 pounds in the past month. Anyways, we then went down to J's parent's to get some of his grandma and grandpa's things out of the old barn. J's cousin who had bought the property and built a house sold it and is moving out so we went down and got some of the grandparent's things. I think it was saddening for J and his mom. It's kind of like the last remaining remnants of what used to be. But we got several “treasures” that have probably no monetary value but great sentimental value. I plan to repurpose some of the items in the house (ladder for a blanket rack, window for picture frame, glass bulb hanging light for a solar porch light.)

I think all the “pickin'” was a little much for me though. I had several bursts of pain while there that have since resulted in a migraine. Lots of bending over and looking up caused them. The sensation is incredibly intense. It's like a million knives being thrown at the front of your brain. I am so excited to not have these issues anymore!

I did attempt to schedule the surgery this morning. I called was transferred from scheduling to the surgery scheduling person. She looked up my information but there were no orders yet. Because we were talking it over & thinking about it, the doctor was waiting to fill out the orders for the surgery. So I will have to wait until they get the orders and call back-or I will just call back later this week to check. I know they aren't Holzer but I feel like that's what a person has to do to get anything done. I did read the MRI report for my auditory canal (I can hear my pulsing heart beat in my ear.) It said that I do have an excess of CSF around the canal and some boney something or the other that may be dehesion or something like that, but should be discussed as relating to CM symptoms.

So I know I am closer than yesterday, but I'd really like to get this done with and feel human again! I am, however, dreading not being able to wash my hair for up to two weeks---GROSS!

Neurosurgery and Faith

So it's been quite some time since I have updated my good little blog here. My last personal health related post left you after my appointment with the OSU Neurologist. I completed the MRI of CSF flow and auditory canal and the neurosurgeon took my case. His name is Dr. Prevadello and he is the director at OSU Neurosurgery. I met with him this past Tuesday amid a visit from the Florida Kelleys. The visit with family was a great visit but far too short. The good doc at OSU discussed the results of my scans and symptoms/problems I am having. I will try to get it all in there.

First-my symptoms because I will mention them frequently. When I strain-lifting, moving quickly, reaching, laughing, coughing, etc. I get a severe blinding pain in the front of my head. It is a short burst that lasts 5-20 seconds and then is gone as quickly as it came. Over the past several years, I have become clumsy, unbalanced, tripped, fell, stumbled relentlessly. I have the strength in my hands of a 70 year old woman-I can't open jars, pill bottles, hold small items, etc. In the past few months I have lost much of my short term memory. It's is straining to remember anything prior to 24-46 hours. I can't remember what I did two days ago!

The Chiari Malformation diagnosis was confirmed. Chiari Malformation is the descent of cerebral tonsils lying below the imaginary line drawn from the base of the skull to the rear of the spinal column. CM I is diagnosed as lying 5mm below this line. Mine currently lie 9.8mm below. Many people have asymptomatic Chiari Malformation or only have mild headaches or migraines. They frequently only require observation. The surgeon attributed all of my symptoms to the malformation (sharp sudden pains in my head, decreased balance and coordination, loss of memory skills and fine motor skills, weakening of the hands/fingers, dizziness, etc.) The symptoms are attributed to the low-lying cerebellar tonsils. When I strain, they are pressed down over the opening of the spinal column blocking the flow of CSF (cerebral spinal fluid.) The CSF flow is already limited prior to straining, but after it causes almost a complete blockage. This essentially causes a buildup of CSF in my brain/spinal cord suffocating my brain. I am NOT one of the asymptomatic people.

The surgeon recommends surgery but gave me an outlook for either way. Without surgery, my symptoms are likely to progress at a rather speedy rate as all of the current symptoms have developed and increased in frequency over only two years. With the severity of the drop of the tonsils and the progression of symptoms, they will likely continue to progress and worsen. He said eventually I would develop Parkinson's-type symptoms: loss of fine motor skill/control, severely decreased balance/coordination, increase in sharp head pains, increased loss of memory, and loss of reflexes. Again, this is NOT the typical prognosis for people with CM I diagnosis. So if you are reading this and have or think you have, don't go 0-60 on me here. He said symptomatic CM I is rare.

The surgery that would be completed is called Chiari Decompression surgery. It entails general anesthesia and a breathing tube (as usual.) Then I would be placed face-down on the table and have 3 pins inserted into my skin around my skull to hold my head still. They would then shave an area approximately 1” wide and 4” long from the base of my skull to my neck. The surgeon would then make an incision approximately 3-4” long in the same area. They will move the muscle in the area (as opposed to cutting through it.) They will then remove a small section of skull at the bottom area. Then the surgery goes more into what the surgeon deems necessary. He will look at the top spinal vertebrae and the cerebellar sac. He may remove the back half of the vertebrae. He may also open the little sac that surrounds the cerebellum, place a patch to enlarge the sac, then close everything back up. The surgery will be from 3-4 hours long, 2-3 days in the hospital, and at least 3-4 weeks recovery. The risks involved mainly surround the general anesthesia and risk associated with it. Activity will be limited especially the first few weeks. I will be unable to do laundry, sweep, drive, clean, or any other activity that requires bending, turning, straining, or lifting. I will be unable to drive until I regain most of my neck rotation.

With the surgery, the likeliness that my symptoms will resolve is very good. He stated that the head pains are likely to reside completely. The other symptoms including coordination, memory, and motor skills will likely return to normal due to my age but may time some time to basically re-learn them. He said that my structure and anatomy are ideal for the procedure. He stated that it's not a “life-saving”surgery but more about the quality of life. CM I doesn't generally result in death with the exception of incredibly severe cases, which are literally a handful. However, it will aid in my ability, agility, and quality of life. ((I WILL BE ABLE TO LAUGH AGAIN!!!!!))

After praying, talking, discussing, and thinking about the options, we have elected to go ahead with the surgery. I will be calling in the morning to schedule. We will be aiming for late October/early November. We want to keep the surgery in the same calendar year for insurance reasons-we have already met our almost $6,000 deductible this year! I would like to be mobile and feeling a little better by the holidays. I also want to save up at least a little leave time to help us out financially while I am off on leave. While I am concerned with the surgery itself, I'm also concerned about being off work for so long. After 4 weeks, I can draw short-term disability at 65% of my current earnings which will help, but it still is a concern. I will have family to stay with me and of course my faithful hubby. Mom has stated she IS staying with me for a while. And I have so many friends and loved ones that I am certain will be available.

I know it is a big deal and cause for concern. From my perspective though, excluding the financial and recovery restraints, I am relieved. For almost two years I've had health care professionals dismiss and avoid my symptoms. They looked at me like a drug-seeker crazy lady. People didn't understand why I stopped laughing freely. It was nearly impossible to explain my symptoms to people. Then it began interfering with my job and nearly cost it. I am incredibly blessed to have a work-family that actually believed my nearly unbelievable problems. I mean seriously, who looks at a relatively health 28 year old and says “yep, I believe she has memory loss.”Walking in public, I often look drunk because I walk into whoever I am with, cars, walls, doors, etc. For me, this is an end in sight. I want to laugh freely again. I want to remember what I did yesterday without having to journal and write it all down throughout the day. I want to put on my shoes without falling over. I want to open a pill bottle or pickle jar. I want to be normal me again!

I know that my family and loved ones are more concerned than I feel at the moment. That may change the closer it comes, but right now I am comfortable with the news and hopeful for the results. I have prayed about it for a long time. I feel that if God wants, He will heal me. But I am also certain that if I am meant to go through this to follow His plan for me, I am all in. I know that He is with me and I am always on His mind. I am excited that He has something in store for me. So it sounds strange that I don't want prayer for healing. I want prayer for strength to follow through with whatever His plan is for me. I think that big ordeals like this are what makes people who they are and changes their direction for His plan. A testimony isn't a testimony without any obstacles. If life has been easy and great forever, we have nothing to share for encouragement. I am confident that if I am not healed, then this is His plan for me and I will walk it with faith. I pray I have support and love from many folks. Prayer is always stronger in numbers. Please pray that I have strength, comfort and wisdom. Please pray for the family that will be walking with me-I think they have it harder than I do! They have to wait anxiously through the surgery while I sleep peacefully. They have to put up with me through the recovery and not beat me in the meantime! So pray for them to have patience, strength, comfort and faith. Please pray for the medical team to have Him with them and guide their hands and minds to be successful and thorough, that they may walk with Him and allow Him in their hearts and minds. Please pray for safe travels and support from all our friends and their families. I know people have it so much worse than I because they don't have the support that I do so I truly feel blessed.

Thank y'all for reading and praying! Prayer really does work and I plan to show y'all in person! I will walk in faith and trust in Him.