Thumbs up just out of recovery
Not feeling so hot but my sisters are so uplifting.
The amazing and humbled Dr Henderson, neurosurgeon
Not feeling so hot after a very scary episode where they had thought I had a stroke.
Trying so desperately to keep my friends updated on Facebook but I just can't keep my eyes open. LOL
Rib harvest site. Two weeks post-op.
Posterior Fossa Decompression and craniocervical site. Two weeks post-op.
Long time, no blog.... My friend has asked why I have not blogged in a while. Well here goes. I have been very ill. Beginning last June, I started going down hill and fast. We picked Kyler (my son) up from the airport, went to Cabella's, had lunch and drove back to Prescott. That evening, I was walking from the kitchen to the living room. My legs literally would not work. My brain was telling them to move and they would not move. I way temporarily paralysed. I had to call out for Justin to come to get me. He had to practically carry me into the bed. It lasted approximately 20-30 minutes. This happened several more times. I had gone to see Dr B in NY (The Chiari Inst). He had told me that if I had burning pain down my arm, to contact him immediately. He did not say anything about this. I did let my neurologist know. My speech declined during these episodes too along with left-sided weakness. All summer I organized the Conquer Chiari Walk Across America while helping to take care of my in laws after a major cardiac issue. I was just putting one foot in front of the other and it was very difficult. In Early Sept I started having the burning down my left arm and up my left side of my face that Dr B had warned me about. My local neuro ordered an MRI. The burning started to increase. The only way I could explain it was to compare it to a tooth ache. It was relentless. The walk went on and pretty well considering. I also had to start using my cane due to balance and tremors. This was a very difficult issue for me to deal with. I literally stared at it for two days and cried. Last time, it was temporary and this time I feared that it was forever. Then someone told me to think of it as something that allowed me to do thing and not something that kept me from doing things. This helped. Still, it was hard. I was driving throughout the summer. It was only a short time, that I was able to drive, but it was such nice freedom. I think it was 5 months. The walk went pretty well. I was exhausted and done. The next day I was hospitalized for 3 days. When my neurosurgeon in New York found out what was going on, I was rushed there and told that I needed to have posterior fossa decompression and craniocervical stabilization. We went through all of the pre-surgical paperwork and I was expecting a call within a week. He placed me in a CTO (cervical thoracic) brace. I NEVER heard back for 4 months. I am not sure exactly what happened. I am not sure if the doctor thought the nurse called or vice versa but I never got a call. I was literally on the couch or in the bed again for 4 months in agonizing pain and depression set in. All I could think of was, "death is not the worst thing that could happen to someone". I was so let down. I finally go the nerve up to call the nurse. She was shocked at how sick I still was. Like I magically got better? She set up a phone appointment with the doctor. When he called he told me I did not qualify for the surgery and that I would have to wear the brace for another 6 months. I was so sad. Luckily, in the meantime I had made an appointment with the world renowned Dr Henderson. I went to see him in February. My films that the Institute were basing there info off were not good enough for him. So he ordered new CT's in different angles. I had to return in March. Sure enough, I qualified. I am telling you. I could not stand up without the extreme desire to vomit,headache, and all sorts of other fun things. My neck was dislocating and that is why I was being temporarily paralysed. I let him know of my disappointing experience. I told him that I loved Dr B and that I did not want to talk bad about him. I think it was more of a poor administration and overload of patients than anything. Dr Henderson said that he would do the surgery ASAP. And sure enough, he did. I had the surgeries on May 1, 2012. I was lucky enough to have two of my sisters travel with me. Dondi and Kristi took 10 days out of their busy lives to help comfort and take care of me. I am one lucky girl. It was a very tough surgery. One of my ribs was removed from under my left scapula to help reinforce the titanium rods that lift and stabilize my neck and skull. Then they made an opening in my skull to allow more room for cerebral spinal fluid to flow. My recovery is faster and better than expected but I do have to slow down and remind myself that I am only three weeks post-op. One great thing was that I was able to walk through the airport on the way home. It was amazing. I thought I was going to have to be in a wheelchair. What a wonderful feeling! Now I am home. My sister Traci stayed home from work the first week to take care of me. She had a hard time keeping me down. I just cant help it. They may have to inject me with something. I have had a few days that I have NOT BEEN ABLE to do anything. That is a quick reminder in itself. I have a new brace to wear post-op. It is softer and just a cervical collar. It has to be warn 24 hours a day for 30 days. I think I only have 9 days to go. Then I will only have to wear it in the car for a while. It has been nearly 9 months of wearing a brace. I could have never imagined my life like this. But what do you do when you are in this situation? You just smile and go on with life. I went out for sushi with my friends the other night for the first time. It was so fun. I was told "I was rocking the brace and that if anyone could pull it off, it was me." Well, I will take that. I have to rock it. That is the only choice I have. Or, stay at home and be a hermit. Oh, that is not for me! Look out world, Kelli is on her way back. And, soon, I will be driving so if you life in the East Valley, you may want to watch out. ;) I hope you are all making the best of your life. If you don't like the way your life is going, only you can change that.
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