If you're following along...
Day 6
On Sunday and Monday the pain in my head turned to a very hard pressure and burning sensation. I also started vomiting again. A call to the NS lead to a discussion with the RN who said it was probably swelling in my brain. She called in steroids to my PCP.
I then went to my PCP who gave me stuff for Zofran and constipation, as well as for the thrush. (This should bring us up-to-date.)
Day 7
On Monday night, I began breaking out in hives. I'd never had an allergic reaction to medicine before so this was a first. Pete called the NS on Tuesday morning and told them not only was the pain/vomiting/nausea still bad but that I now had hives. They did not return my call.
Over the course of the day, the pain intensified. I used up the remainder of the pain medication and when, at last, the NS nurse called back we were informed that they would not give me anything else. That people have this surgery all the time and that I would be okay. Needless to say, we were not happy.
Day 8
On Wednesday morning, the pain was terrible. At 8:00 am, the nurse called and said that in light of recent events I needed to go to Cincinnati right then and there. (Maybe they read my blog entry?) Now, Pete works third shift in our house AND has a sleeping disorder. He had only gone to bed 2 hours before. Cincy is 5 hours of driving for us. He asked them what they were going to do for me, thinking that we did not want to endanger our lives for Tylenol, and the nurse said she didn't know.
We had only been on the road for 30 minutes when he fell asleep and drifted off the road. Needless to say, staying on said road was no longer an option. I couldn't possibly drive and neither could he. I called the NS and asked them if we could move the appointment up, if they could talk to my PCP and maybe talk to me through them, or do something else instead.
Nope.
Instead, the receptionist called me back and told me not to bother coming in at all-just to come in next week for my regular 2 week follow up.
Day 8 turnd out to be a blu or pain, vomiting, and loss of consciousness. I have probably been in more pain in my life but I don't know when. I can FEEL the fluid pooling in the back of my neck. It moves. The pain made me break out into clammy sweats. I honestly felt like I was dying at times.
Day 9
First thing this morning, I went to my PCP. She sorted me out and took pity on me and examined me. We determined that my local university hospital can at least fix a leak with a blood patch, even though they know little about Chiari. She also went to work on finding me a NL and a Rheumy to help with the Ehlos-Danlos front.
The verdict is, I am going back to Cincy for my follow-up, but will be going to UK for the remainder of my care. It appears that my NS has kind of washed their hands of me. In the meantime, I will continue to drink fluids, stay flat, and monitor myself for a fever. I'll go in for the follow-up next Wednesday but if something gets worse before then I will go to UK. At this point, I am not sure I want Cincy to operate on me again. I am not real satisfied with the level of care I am getting from there and feel like it borders on inhumane.
My friend Abby sent me some chicken soup via mail and I was able to eat that today. I finished the whole bowl-the first food I have finished in 9 days, and it felt good to eat. I also had some birthday cake with Pete since today was his birthday. Sam made a little party for him with balloons, pizza, and football napkins.
I did everything they told me to: lost weight, ate an anti-inflammatory diet, cut out caffeines and processed foods, and stopped pain medication 2 weeks prior to surgery. They haven't done much to hold up their end.
After getting some pain relief today, I was able to nap better and rest. This has helped ease the pressure on my brain which has also helped the nausea and vomiting.
Day 6
On Sunday and Monday the pain in my head turned to a very hard pressure and burning sensation. I also started vomiting again. A call to the NS lead to a discussion with the RN who said it was probably swelling in my brain. She called in steroids to my PCP.
I then went to my PCP who gave me stuff for Zofran and constipation, as well as for the thrush. (This should bring us up-to-date.)
Day 7
On Monday night, I began breaking out in hives. I'd never had an allergic reaction to medicine before so this was a first. Pete called the NS on Tuesday morning and told them not only was the pain/vomiting/nausea still bad but that I now had hives. They did not return my call.
Over the course of the day, the pain intensified. I used up the remainder of the pain medication and when, at last, the NS nurse called back we were informed that they would not give me anything else. That people have this surgery all the time and that I would be okay. Needless to say, we were not happy.
Day 8
On Wednesday morning, the pain was terrible. At 8:00 am, the nurse called and said that in light of recent events I needed to go to Cincinnati right then and there. (Maybe they read my blog entry?) Now, Pete works third shift in our house AND has a sleeping disorder. He had only gone to bed 2 hours before. Cincy is 5 hours of driving for us. He asked them what they were going to do for me, thinking that we did not want to endanger our lives for Tylenol, and the nurse said she didn't know.
We had only been on the road for 30 minutes when he fell asleep and drifted off the road. Needless to say, staying on said road was no longer an option. I couldn't possibly drive and neither could he. I called the NS and asked them if we could move the appointment up, if they could talk to my PCP and maybe talk to me through them, or do something else instead.
Nope.
Instead, the receptionist called me back and told me not to bother coming in at all-just to come in next week for my regular 2 week follow up.
Day 8 turnd out to be a blu or pain, vomiting, and loss of consciousness. I have probably been in more pain in my life but I don't know when. I can FEEL the fluid pooling in the back of my neck. It moves. The pain made me break out into clammy sweats. I honestly felt like I was dying at times.
Day 9
First thing this morning, I went to my PCP. She sorted me out and took pity on me and examined me. We determined that my local university hospital can at least fix a leak with a blood patch, even though they know little about Chiari. She also went to work on finding me a NL and a Rheumy to help with the Ehlos-Danlos front.
The verdict is, I am going back to Cincy for my follow-up, but will be going to UK for the remainder of my care. It appears that my NS has kind of washed their hands of me. In the meantime, I will continue to drink fluids, stay flat, and monitor myself for a fever. I'll go in for the follow-up next Wednesday but if something gets worse before then I will go to UK. At this point, I am not sure I want Cincy to operate on me again. I am not real satisfied with the level of care I am getting from there and feel like it borders on inhumane.
My friend Abby sent me some chicken soup via mail and I was able to eat that today. I finished the whole bowl-the first food I have finished in 9 days, and it felt good to eat. I also had some birthday cake with Pete since today was his birthday. Sam made a little party for him with balloons, pizza, and football napkins.
I did everything they told me to: lost weight, ate an anti-inflammatory diet, cut out caffeines and processed foods, and stopped pain medication 2 weeks prior to surgery. They haven't done much to hold up their end.
After getting some pain relief today, I was able to nap better and rest. This has helped ease the pressure on my brain which has also helped the nausea and vomiting.
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