A lot of people have asked me what the prognosis is for Lim, and what can be done or tested or prescribed etc. So, I thought I'd put together some of the research I've done on PCS for anyone who is interested.
A few points of note:
1. Post Concussion Syndrome is a collection of symptoms experienced by SOME people who suffer a concussion. Not everyone experiences them and what symptoms and how badly people experience them varies from person to person and concussion to concussion.
2. There is NO proven correlation between severity of initial impact (or the TBI: Traumatic Brain Injury) and the extent or duration of PCS.
3. Symptoms of PCS can last for days or months after the initial TBI.
4. Experts now tend to classify concussions as "simple" or "complex" (the latter meaning symptoms last longer than 10 days).
5. There is some evidence that people can be genetically predisposed to PCS symptoms.
6. Experts differ on whether PCS is caused by damage to the actual brain, a disruption of neurotransmitters, or whatever it is that causes depression/PTSD etc. So, one path of "treatment" is to put victims on Elavil or some similar antidepressant for a time.
7. PCS does not follow a timetable, and it does not trend linearly. That is, improvement does not tend to be consistent or predictable. One day may be somewhat better than the last and the next may be worse. Symptoms can disappear and reappear. Lim's headache appears to ebb and flow like the tide depending on the amount of stimuli around her and the time of day.
So, what do we know about Lim so far:
1. She did not black out on impact, but she was immediately dizzy and headachey.
2. Her CT scan, done two days after the impact, was normal. Her MRI, done almost 4 weeks after impact, was normal. So, not visible damage to her brain has occurred.
3. She has no neck or back pain, ear pain, loss of strength in appendages, or vision issues.
4. Cognitively she is fairly sharp (counting backwards from 100 by 7s out loud and some other simple tests the Mayo Dr. performed last week) and she has been very inquisitive and communicative.
5. She cannot read without the headache spiking. She cannot watch TV. She cannot listen to music for long without the headache spiking. Artificial lights cause the headache to spike. Loud voices do the same.
6. Once the headache spikes, it takes a couple of hours of quiet rest to return to baseline. At no point has she been headache free since the impact.
7. Her appetite is hit or miss and has been since the impact.
8. Her sleep is very disrupted. She is exhausted but she cannot sleep much during the day.
9. Sometimes Lexi is there. Sometimes Lexi is not. It is scary and frustrating when she is not.
10. We have another appointment with Mayo on Tuesday. Right now we have an appointment with UF Shands on neuro on March 21. Nemours won't see her until she has had symptoms for TWO months, aka March 22.
11. I am working on getting Mayo to set up a consult somewhere else, sooner. Getting such a creature is very difficult, especially from Clearwater in the middle of a swim meet on a holiday weekend.
12. Lim has now missed 4 weeks of school. She went for a total of TWO classes last week. It did not go well and she actually seems worse than at the beginning of the week. This could be because I am weaning her off the Elavil.
13. Our days consist of:
Lim wakes up in a fog. I make her hot cocoa and maybe some french toast.
We snuggle on the bed for a bit.
She takes a bath and I try to work out or do chores.
She lays down on the bed. I join her.
At some point we go get a smoothie and maybe sit outside taking pictures or throwing the ball for the dogs.
We lay on the bed.
I run to EHS and meet Bim after school for an hour to chat and give her her swim stuff.
I go back home and either snuggle on the bed with Lim or sit outside, depending on how she is feeling.
M picks up Bim and everyone but Lim eats dinner (Lim usually has no appetite at that point).
Lim and I go upstairs and snuggle while she starts to fall asleep, and Bim does homework while Matthew does chores.
I leave Lim half or all the way asleep and spend an hour with Bim before she goes to bed.
Insert doctor's appointments as needed. On days she tries school, I drop her off and park in the lot and either run or read for the 45 mins she is actually in class. If she gets to stay any longer I will probably be parked there as well until she demos she can handle a predictable chunk of time.
Occasionally M comes home early and I stay at EHS and run and watch Bim's practice.
Who wishes they were walking in my shoes NOW...?
Here are a few links to info I have found, if you want to read up on it for yourself:
http://www.mayoclinic.com/health/post-concussion-syndrome/DS01020
http://www.training-conditioning.com/2010/08/30/what_happens_next/index.php
http://health.usnews.com/health-news/family-health/brain-and-behavior/articles/2011/01/29/multiple-concussions-raise-teen-athletes-health-risks
http://www.examiner.com/sports-in-boston/marc-savard-still-suffering-from-post-concussion-syndrome
Recent interview with Sidney Crosby:
http://www.youtube.com/watch?v=Z3G__Z0WdKM
...that's my why, what's yours?
No comments:
Post a Comment