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.

Monday, October 11, 2010

Bradycardia, Reduced Consciousness

I know. I'm a delinquent blogger. It's just hard to know what to say when things are going wrong and not looking up. So, I'll simply report the facts.

I've been having a new symptom, and some more worsening symptoms. I've had some spells of prolonged bradycardia, as low as 38 beats per minute. I haven't lost consciousness. But I have had many different levels of reduced consciousness, and it feels like I'm never fully awake anymore. I am often in this state at least 6 hours a day: reduced awareness, reduced alertness, unblinking, limp, lethargic, difficult to rouse. I've reported this symptoms to my POTS specialist and my neurosurgeon. I'm now on a 30-day holter monitor to try to catch the bradycardia episodes (of course, the lowest I've recorded is 46, but we're getting closer). My heart rate is also hyperreactive to anything I do, but the monitor is really able to catch that. The most it can record is 2 minutes and 15 seconds a day. I would need more of a 24-hour holter for that type of problem.

The POTS specialist says that this is not related to POTS. Tachycardia is typical of POTS. Bradycardia is not. So this is a new and unexplained symptom.

My surgeon also ordered scans of my cervical spine that we're arranging to have set up. I guess he's worried about the bradycardia episodes being related to the fusion.

I also need to have my Lithium levels tested, although my dosage has been constant for a long time.

I still haven't actually had an appointment with a doctor about this new problem.

During the bradycardia episodes, and actually most of the time, my state of consciousness has been reduced. I've been really out of it. Staring. Limp. Weak. Tired. Short of breath. Not very reactive. Can't think much (Reduced mental status).

Besides all of this, essentially every symptom I've ever had has returned or gotten worse.

Sunday 9/26
Pain: 3, Achy
Walk: 30 minutes, up and around the hill

Monday 9/27
Aches/Pain after walk
Chills at night
Exercise: 27 minute walk, 20 minute bike

Tuesday 9/28
grocery trip: bad, caused a spell of reduced consciousness
Headache: brain, especially at the back--definitely Migraine
30 minute walk w/ ankle weights

Wednesday 9/29
No appetite
31 minute walk, 25 minute bike

Thursday 9/30
No appetite
Exercise video: 40 minutes, Heart rate: 170

Friday 10/1
saw a movie in the theater
GI distress

Saturday 10/2
Collapsed when climbing stairs
Unable to move all day: restricted to bed

Sunday 10/3
bike 15 minutes

Monday 10/4
bike 20 minutes

Tuesday 10/5
Muscle aches
Bruised feeling all over
Joint pain
Reduced appetite
22 minute walk

Reduced consciousness spell: weak, tired, out of it, short of breath, palpitations
120/76-HR 48
126/81-HR 47
134/88-HR 44
134/83-HR 44
138/90-HR 39
136/89-HR 42
134/81-HR 42
Lasted at least 3 hours

Wednesday 10/6
Recumbent cross trainer-10 minutes
Reduced consciousness spell
135/92-HR 39
145/94-HR 40

Thursday 10/7
after breakfast, resting
feeling "normal"
102/67-HR 81
102/64-HR 88

Later, out of breath just talking
108/72-HR 53

Friday 10/8
Begin 30-day Event Monitor

Rest after exercise: HR 52

Saturday 10/9
Decreased consciousness most of the day, HR low was 46

Sunday 10/10
Decreased awareness, decreased alertness, weak, tired, HR low was 48

Monday 10/11
Zoning out all day. Low so far around 52. Will probably get lower later, as it usually does. It seems to trade off between low blood pressure and low pulse, so I'm always symptomatic, but always just barely conscious.

It seems like I should see a doctor, but the cardiologist just gave me this monitor. Don't know who I should see.