So far so good. Very occasional headaches. I have come to accept that my balance will never be what it was but it is acceptable and livable.
Part 3 The day after surgery.
I awoke from surgery in recovery confused and groggy. There were nurses going back and forth and I could hear the couple next to me talking about their daughter that had surgery by Dr. Oldfield before me. I remember the back of my head and neck hurting a lot. However it was a different kind of pain compared to the Chiari Headache. As I lay there I finally got my wits about me a little and I thought “Wow, why did I let Jessi talk me into this. This sucks!” I then cursed her for getting me into this. Yeah, I am not proud of that but I won’t lie. All I could think of at that point was that I was going to hurt like this forever and the headache was sure to come back. My nurse realised that I was awake and checked me over and gave me pain meds. Welcome Lala land followed.
The next time I woke up all I could think about was that I wanted my wife. I needed my wife. Where was my wife. She would make things better. She always did. It was her nature and what she did for me. Just to hear her voice was all I wanted. I couldn’t see well because they had removed my contacts before surgery and that was frustrating. I waved someone down and asked where my wife was. They told me that she could come back and visit soon but they were very busy, it would be a few minutes. I then began to think and realise that something felt different. Not just the surgical pain but an awareness that I hadn’t had in a while. I closed my eyes and took my finger and tried to touch my nose. I did it on the first try. I hadn’t done that in months. I always missed because my coordination was so messed up. This was awesome. Wow! Then there was more pain meds and welcome Lala land again.
The third time I woke up still in recovery Jessi was there beside me stroking my face and watching me sleep. It was sooooo good to see her. My angel was with me finally. I wanted to talk to her and ask how things went but I wanted to show her how I could touch my nose too. She was amazed when I did it for her. Don’t get me wrong I still hurt but not like the first time that I woke up. Jessi stayed with me for a while and talked to me till I fell back to Lala land with more pain meds.
I awoke a while later and they were getting ready to move me to a room on the Neuro Step Down floor. I thought I was going to be in ICU. Could this be true. I had developed a terrible migraine at this point though and I didn’t care where they put me, only that they made this migraine go away. So more pain meds and a relatively regular room followed. My new nurse was terrific. I asked her for something to break the migraine because I could hardly think it hurt so bad. Jessi had gone back to our room for some much needed rest and I was thankful that she was well taken care of by her mother and my best friend. But wow I hurt. My nurse gave me their Migraine Cocktail and I finally slept for about 5 hours straight restfully.
When I awakened this time it was the next morning and my head felt a lot better. No migraine just the soreness and pain from surgery. The assisting neurosurgeon showed up and evaluated me and told me how surgery went and said they would be back in later. A nice lady came in and got me cleaned up and shaved and they got me a soft breakfast. Jessi and her mom came in and then the wonderful nurse came and took out the Foley Catheter. Wow was that a relief. Physical Therapy dropped in a little after that with a walker and a plan of attack to get me up and walking. I so wanted to get up and move but I was afraid of falling or busting something loose.
This is probably the coolest part of this time of my journey….. I walked down the hall with the walker but I walked a straight line. No bumping into walls or swaying uncontrollably or veering off in the wrong direction. This was the first time that I had walked half way normal in 3 months. Jessi was standing behind me watching in awe. Not much else I can say. I was amazed myself when I realized what I had done. WOW. Yippee! Yeah! Amazing! I was ecstatic, amazed and thankful beyond belief. I really don’t know how to say how this felt. There just aren’t the words to express it.
At this point I was thrilled with the results of surgery. There was none of the constant Chiari headache pressure. I had at least 70% of my coordination and balance back. Yes I hurt from the surgery and I could barely move my head but I knew that would get better with time and therapy. I considered this a huge leap to mean that it was successful.
More later in part 4 of my Surgical journey. This was just the beginning of my recovery and my road to wellness.
The day before surgery was odd for me. We arrived at Dr. Oldfield’s office for pre-testing and the final consult. I was filled with trepidation. I told my wife in the parking lot that we could always not do it and just have a nice little vacation here in Virginia. It would be fun. We could visit the local sites like Monticello and spend time in the pool and relax. We could then offer our friends and family some made up story about how the Dr. was sick and couldn’t do it and that we waited for him to get better and reschedule but he never got better. She didn’t think it was funny nor did she like the idea.
Dr. Oldfield was late that morning due to some traffic tie up and we spoke with his Nurse Practitioner, Becky Hand, about some things for about 30 minutes. When he arrived he was once again very personable and understanding. We didn’t’ tell him about our discussion in the car about skipping out though. LOL. He pulled up the MRI again and explained what he expected to do and talked about the risks and complications that could arise. CSF leaks were the biggest concern, of course, along with infection. Doc didn’t expect to take too much skull nor more than the back half of CI and wasn’t sure if a dura patch was going to be necessary. He uses a piece of the patient’s tissue for the patch. He said they would prep an area for the patch just in case. We then went to Becky’s office. She was great. She is funny and down to Earth and has a way of making things real. We signed the consent forms and headed to the lab and then to the hospital for pre-admission paperwork. They already had everything done through my insurance we just had to sign some more papers there also.
We were done in the matter of about 3 hours total and headed for some lunch. Still, I was in a daze. It didn’t feel real yet no matter how much we had done and discussed with the doc and Becky. I mean it was very real talking to Becky, but it was like I was watching it happen from someone else’s eyes and not my own. Yes, I was scared, nervous, awkward feeling. Trepiditious!!!! I didn’t want to do this. I knew that I needed it or else I was going to get worse. A syrnx would form and the sleep apnea would worsen along with everything else. All of my symptoms could and would most likely become permanent without surgery. I didn’t’ want that either. I wanted my life back and that is that. END OF STORY. But there is always that chance that surgery won’t relieve the symptoms. I had read about it so many times.
My wife was terrific. She worked so hard to make me feel comfortable in my own skin that day. She joked and flirted with me like we were newly weds; she comforted, consoled and generally babied me all at once. Wow, I want that part all over again. My best friend Dave came in that evening and we all sat down and had a drink and talked about old times. I forget to mention that my Mother-In-Law went with us to support my wife also. She has taken me in like I was a long lost son. She treats me with respect and caring. I couldn’t ask more of a nicer lady. It was a good evening. They did a great job of getting my mind off the coming morning.
We all met at the hospital that morning and waited patiently for my turn. Next up on the chopping block, Kyle’s brain. It felt like forever that morning. That feeling of not being me was gone though. It was all real and it was going to happen. When they gave me the sedative and wheeled me out and away from my family after I said my “see ya later’s and I love you’s” I was asking the Anesthetic if they would take pictures and that I wanted copies. I don’t really remember doing that though. Oh well!
More about this coming later. Thanks for reading.
Well I guess I should start with why I had surgery. My sympttoms started in August of 2008. It started with the headache that just wouldn’t go away no matter what I did. My wife was taking care of her father who had small cell lung cancer. She had been running him to doctors and for chemo and doing general care now for almost 7 months. Her Mother and her were working themselves ragged taking care of him and my wife’s Grandmother that has Alzhiemers. Meanwhile I was working my 24 hour shifts as a paramedic and watching our three kids when not at work and doing what I could at my Volunteer Fire Department where I am an officer. It was stressful to say the least. I didn’t want to tell Jessi because she had enough going on as it was.
First thing I did was call my PCP, diagnosis was stress headaches. sounded plausible to me. So I began with minor pain relievers and muscle relaxers. This helped but it didn’t actually take away the constant nagging pain in the back of my head. So then I tried my Chiropractor. Wow. that was an experience in itself. The crack of my neck as he adjusted me and instant relief for about an hour. Then it came back with a vengence. I only did this twice. Well it was that time of year to get my eyes checked and contacts changed. So I went to my eye doctor. My contact lens script had changed just a bit so I took care of that. All of this took about 6 weeks to do.
Needless to say none of it actually worked. I got some relief on occasion but the headache was always there. I finally told my wife what was going on at that point. I couldn’t hide it anymore. Her father passed during this time and she went back to work a couple of weeks later. By this time it was late September and I noticed that I was stammering on some words, and my hand eye coordination was going to hell in a handbasket and I was developing insomnia. As a medic I need hand to eye in a bad way as well as sleep.
Jessi insisted that I go to the ER around the last of September. She just knew that something bad was wrong. I wrote it off as lack of sleep and stress. I’m a medic, I know what I am talking about. Well at least I thought that I did. The ER trip was pretty inconclusive. CT scan was negative, blood work was clear and X-rays were normal. Nothing out of the ordinary. Diagnosis insomnia combined with tension headaches. So once again I was told to continue the pain relievers and muscle relaxers. They also referred me to a local Neurologist.
It took me a two weeks or so to actually make the appointment and go. I’m a medic, right. I know what I’m doing. I don’t need no stinking head doc to see me and run up more bills, I just needed a vacation. WRONG!!!!!!!
So this local head doctor tells me my brain is too big for my head after an MRI and starts talking about Chiari and what it might take to make things better. By this time it was mid November and I was worried but not scared yet. I wasn’t bad in his opinion and we could work with this to get me to feeling better without surgery. So we tried some anti seizure meds and stronger pain relievers. Boy was he wrong about getting better.
In the course of 2 months I developed balance issues, more coordination problems, numbness in left hand and left side of face, confusion, more speech problems and more sleep problems (that turned out to be sleep apnea). It was January of 2009 and I was falling apart rapidly and my head hurt worse than ever. Not too mention none of the medications were helping anything. So I agreed to look into surgery, and that is that. I was scared at this point.
Part 2 comiong soon beginning with the day before surgery.
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