Sunday, September 26, 2010

Some bad days, Days in Bed, A Plateau

Friday 9/17
Switch to hypomanic
Awoke with heart pounding
Sharp pains in right rod
Spell: decreased conscioussness

Saturday 9/18
Body aches
Heart pounding
Chest pains
Couldn't get out of bed all day
Walk: 10 minutes- excruciating

Sunday 9/19
Fatigue early
Better energy
Less pain
Reduced consciousness spell
Heart feeling better

Monday 9/20
Lethargy improved
Heart improved
Reduced consciousness spell
Low blood pressure all day
Abdominal pain
Low pain level: 2-3
Bike: 20 minutes HR 120's

Tuesday 9/21
Flu-like symptoms
No appetite
Migraine kept me up at night
Exercise video: 20 minutes- HR 120's

Wednesday 9/22
No appetite
Flu-like symptoms
Walk: 20 minutes

Thursday 9/23
Headache: Top of head/forehead

Friday 9/24
Migraine woke me from sleep
Flu-like symptoms
Walk: 34 minutes- HR 130's/140's

Saturday 9/25
Back left upper skull pain/throbbing- 8
Bed day
Walk: 5 minutes- excruciating

Tuesday, September 14, 2010

Four Weeks Post-op

My recovery is progressing and improving, but not in a linear fashion, of course. Recovery is always "2 steps forward, 1 step back." It's very frustrating, but overall, I can tell that even with multiple setbacks and plenty of symptomatic days, I'm still getting better overall.

Friday 9/10
Pupils functioning fully.
POTS symptoms much better.
Exercise tolerance improved.
Intractable headache
Walk: 2 laps
Walk: 2 blocks

Saturday 9/11
Walk around golf course: 23 minutes
Active day

Sunday 9/12
Walk: 2 blocks
Active all day
Pain, neck and head: 6

Monday 9/13
No activity all day
Bike: 8 minutes

Tuesday 9/14
Walk: 18 minutes
Headache worsened: 7
Bike: 6 minutes

Wednesday 9/15
Physical therapy
Bike: 12 minutes

Thursday 9/16
Grocery trip
Heart palpitations/pounding
Walk: 30 minutes

Thursday, September 9, 2010

Three Weeks Post-Op

For some reason, by the time we got home from the hospital, it looked like my recovery was going to be one of those rare quick and dramatic recoveries; a sharp contrast to the long and drawn out recoveries that I'm used to.

For ten days, my body surprised me. Besides the surgical pain and the post-surgical "quirks," I was symptom-free. Really. No headache (again, besides localized surgical pain). No nausea, no facial pain, no POTS symptoms. I was amazed.

I certainly wasn't expecting this when it happened. It seemed too good to be true. I tried not to get my hopes up. But it really seemed the the surgery had very quickly solved all of my major complaints.

Then, Tuesday happened. Blackouts, collapsing, low blood pressure, pupils not working, tachycardia, palpitations, arrhythmias, the old headache, body aches. They all came back, and have persisted.

Now, I never expected to be symptom free, at three weeks out, or ever, really. But for ten days, I was. It's hard not to wonder why I was doing so well.

Especially something like pupillary constriction. That was immediate after surgery. It was perfect. And now, it's sluggish and incomplete. What changed to make this happen, along with other symptoms coming back so abruptly? My blood pressure hadn't been noticeably low since surgery. Now, it seems to be constantly low.

However, I know to expect a long recovery. I expected not to see symptom relief for a long time. Twelve months is a good guess for recovery time from symptoms for this operation. POTS recovery can take longer than that, and it is not expected to be complete.

But for those ten days...I had such a feeling of well-being. It felt like I had a new body. I just wonder what that was about...


I had my first physical therapy appointment on Wednesday.
The script from Dr. B only had one instruction: "Optimize neck ROM" (range of motion).
So, when I went to my appointment, that's what we started doing. Stretching. I left with quite a headache. I wrote to my nurse, to find out if this was okay. She said that no stretching is to be done. Just massage, warm compress, and later, ultrasound, and TENS. Quite a contradiction to the script. Hopefully, we'll get this straightened out.
I also hope I can find a physical therapist that can give a good massage. He seemed to be scared to touch me. I need to get to a massage therapist, and fast!


I really wish those ten days hadn't happened. They got my hopes up and left me disappointed with my current condition. I'm actually having a good recovery. I'm still in pain (between 4 and 7). I have a lot of trouble finding a way to rest my head on a pillow at night. But I'm getting out for daily walks. I'm able to get in and out of bed easily. I still have a lot of fluid. Once that is absorbed, the pain should decrease. It's still much better than I expected. I know it's good. I'm working on readjusting my expectations. I knew it was too good to be true. That's why I didn't want to admit just how well I was doing. I didn't want to admit that my headache was gone. But I was really ecstatic. Now, I've actually been crying for three days straight. It doesn't make sense, because I know how lucky I am, still. I guess I just really got my hopes up that things were really going to stay so drastically better so early on. I wish I could stop crying. I know it's ridiculous. Oh well, I will adjust my expectations again, in time. I've done that enough times in my life; I'm sure I can do it again.

Tuesday, September 7, 2010

19 days after surgery

Day 14
Day 19

I've had some strange "side effects" from surgery that I expect to wear off after some time. Some have already begun to wear off.

First, my voice was very weak, strained, and hoarse after surgery. Luckily, this one has already improved dramatically.

Also, my jaw cracks on the right side when on open it. This is also happening less.

My right ear has been behaving very strangely. At first, it would vibrate and buzz at certain sounds. Now, it just echoes my voice and amplifies sound sometimes. Getting better.

There is a strange clicking sound and feeling in the back left side of my head with the impact of walking. I wasn't sure if this would improve, but during today's walk, for the first time, the clicking decreased in frequency.

The back of my head is still full of fluid. It is one large pocket of fluid. I have trouble resting my head at all, because of the pressure of the fluid. Still waiting for the fluid to be absorbed and the pressure to go down.

In the time from pre-surgical testing to the time I got my stitches removed, I lost 10 pounds. That wouldn't be hard to gain back, but I'm hoping to gain back more muscle than fat, so it could take some time.

On Saturday, September 4th, I took my first shower. Washing my hair was near impossible. My head and scalp are so sensitive to the touch. Just moving my hair around is painful at this point. Unfortunately, as I did wash my hair, I noticed it falling out in chunks. It was distressing. Luckily, I wasn't left with nothing. This was apparently an effect of the eight hours of anesthesia. Hopefully, I won't lose the rest of it! It seems to come out at the lightest touch.

Sunday and Monday, I began having new, sudden, sharp pains in my head. I'm sure that's just part of the healing process.

Today, I had a bit of a rough time. My vision has blacked out three times. I collapsed once. My blood pressure has been low today, around 90/70. I've also had palpitations, tachycardia, and the feeling of a very reactive heart.

I'm also feeling very achy today and my joints hurt more than they have been.

I've been feeling emotional today, too. Knowing that the POTS recovery will take a long time, and certainly wasn't "cured" by the surgery. Everything in its own time.