Welcome to our blog! I originally started this blog in November 2010 just prior to having a major brain surgery to remove a large bleeding cavernous angioma from a deep part of my brain. You can best understand the gravity of our experience by reading the first several entries.(Nov 2010-Dec 2010) I wrote the first one and my sweet, adoring husband, John, wrote the next several (while I was too sick to do much of anything) that documented surgery, immediate recovery, and our reaction to the surgery complication (stroke)that was revealed 2 days after surgery. This recovery process has been difficult but we are making it. We appreciate all the kind words of encouragement we have received and we would like to thank everyone that has participated in helping us along this difficult journey. Also, if you have any questions about my personal experience, please leave them as a comment or contact me directly at thankfulforeveryday@yahoo.com and I will respond although I am not a doctor and this is not a replacement for medical care or advise. Please ask a real professional, or probably several. :) I hope to be able to help at least one person along the challenging road of brain surgery and recovery.

Saturday, January 7, 2012

A new year and a new set back

As we rang in the new year...we were hopeful we were leaving all of my health problems in the past. I was hoping 2012 would be filled with continued recovery and good health. Turns out...2012 has brought a minor set back so far. I was not feeling well for several days since Christmas, but had hoped it was related to "over doing it" with entertaining family during the holidays. It became alarmingly clear that there was actually something more going on when I experienced extraordinary back pain that persisted for several days. The first day, I tried to ignore it. The third day that I had the pain, I went to the ER...hoping to resolve any possible problem in 2011. Following the ER visit, I initially improved  only to experience increasing pain over the next two days. When my doctor's office finally opened on Tuesday morning after being away for the long holiday weekend, I was there waiting for her. She examined me and took a complete history of my complaints after which she explained two options. Option A: Go to the hospital, be admitted to figure out what's wrong with me, and get me treated. Or option B: do lab work, abdominal CT scan, and change the antibiotic again (4th switch)...wait for the results and then be admitted if need be. I chose option B...hoping to stay out of the hospital. My lab work and ct scan did not indicate any specific reason for my pain, although while I was in the ER my urine contained bacteria and blood, leading them to the diagnosis of kidney infection. (I had a UTI about a month ago that must have not been entirely treated although most of the original symptoms resolved.)  Normally, one can just be treated with oral antibiotics and the problem resolves. For me, finding an antibiotic that works that also does not lower the seizure threshold was proving to be a challenge. I had been on 4 different antibiotics in the past week that didn't work. My doctor finally selected Levaquin to treat my infection and it is a 10 day course. After consulting with my seizure specialist...he put me back on Keppra. :( So here I am back in a fog, not able to drive while they adjust my Keppra so that my infection can be treated outside of the hospital. There were several other antibiotics that do not increase the possibility of seizures but they are only available in IV formulations. This is just another example of how having a brain problem complicates life.
The good news is that it seems this 5th antibiotic is working. My pain has been greatly reduced and is limited to my left lower back. Additionally, I am still seizure free on day 5 on the 10 day course with the Levaquin. :)
While I do feel this whole episode has been a set back in my recovery...I am hopeful it will resolve in the next few weeks and then I will be back on track. I was advised to stay on Keppra for the length of the Levaquin course and then I will be able to wean off slowly over the next week or so. Looking forward to being "Keppra free" again soon. This stuff makes me really groggy!! And happy New Year!!!

4 comments:

  1. I've experienced many setbacks so I know how upsetting they can be. While it's going on it's hard to visualize a time when things will get back to normal. I know you'll hang in there until you experience success.

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  2. I'm sure it's frustrating to go through such things, but I'm glad there was medication that was available to help you and to keep you at home with your precious family. Thanks for posting!

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  3. I'm so sorry about your troubles. I've been on Keppra over a year. I hate it. My neuro did lower my dose--it's at the minimum--but I always wonder if my language skills would be much better without the Keppra.

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  4. Thanks ladies!!! I am feeling better, but not yet back to where I was. Between the Keppra, the infection, and the mess of antibiotics...it's gotten confusing as to what the problem is. Hoping it just resolves eventually. Yes, Grace...I'm pretty sure Keppra is toxic to me too, but it does stop the seizures thankfully :)

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