Monday, October 25, 2010

Here's an email I sent to my surgeon that summarizes my post-operative struggles:

I had the MRI and xrays done this week that Dr. B requested based on my post-surgical cardiological problems. I wanted to make sure that Dr. B has a full picture of my post-op symptomatology to consider, along with the images, when they arrive.

My cranio-cervical fusion revision was August 19. My time in the hospital went smoothly. Immediately after surgery, we noticed a complete improvement in my pupillary reflexes as well as my swallowing. I flew home on August 27. I experienced dramatic symptom relief in the following days. I experienced relief of all of my POTS symptoms, my headache, and my fatigue. My balance was very steady, and my "brain fog" was gone. I woke up every day feeling energized and light. I built up my pace and endurance on daily walks very quickly.

September 7 was the first day I noticed a change. When I went from sitting to standing, my vision would black out. This caused me to check my blood pressure. It was 90/70, which was quite a bit lower than it had been when I was feeling good (around 120/80). I also felt a headache this day. In the following days, I had low blood pressure (as low as 80/40), vision blackouts, legs giving out, palpitations, nausea, chills, and fatigue return.

On October 5th, I went for a walk with my heart rate monitor on, and noticed my pulse get very low (HR=38). This happened several times in the following days, in conjunction with reduced consciousness. During a reduced consciousness time, which can last for several hours, or even much of the day, I experience limpness, lethargy, reduced awareness, reduced alertness; and trouble focusing, understanding, and producing words.

In addition, my dysphagia, which had gone away, has started to return, which choking on water and pills.

My pupils only work sometimes.

My baseline headache has gone and returned.

My fatigue and flu-like feeling have gone and returned.

My autonomic dysfunction has gone and returned, however, it used to be strictly POTS. Now, my blood pressure can be too high or too low; my heart rate can be too high or too low. So, my POTS doctor doesn't know how to treat me, and my cardiologist is considering a pacemaker, pending the results of my 30-day event monitor. I have marked heart rate lability and blood pressure lability. In addition, I experience shortness of breath, and my lips are often blue.

I expect this recovery to be a long one, so I don't mean to complain. But I did want to alert you to the seemingly complete elimination of my symptoms in my early recovery, followed by the return and even worsening of many symptoms right now. It's hard to understand and hard to explain what has happened.

I cannot remember anything happening to my head or neck that could have caused any damage.

I am continuing with my Forteo shots at this time, and to the touch, it feels that my skull has filled in with bone.

Thank you for considering my situation.