Tuesday, June 26, 2012

Working on it

Last week, I survived my spinal tap.  Monday was the lumbar puncture.  My pressure was normal (opening pressure: 7.2, ending pressure: 5.2).  So, we can eliminate the possibility of needing a shunt at this point.

During the lumbar puncture, they remove CSF from the spinal cord.  CSF is cranio-spinal fluid.  The samples have been analyzed to check for infection and signs of multiple sclerosis.  I'm still waiting on these results.

After the spinal tap, a small hole is left in the lining of the spinal cord. It normally closes on its own in the first 12 hours. For me, it never heals on its own, so it allows the fluid to leak out continuously, particularly when you are vertical. This causes low pressure around the brain, which causes a terrible headache and nausea whenever you sit up. 

A blood patch was performed on Wednesday.  The blood patch is an injection of your own blood into the area around the hole. The blood coagulates and encourages the hole to seal. Then, the lost fluid is replenished, and the pressure returns to normal. Luckily, this procedure was successful in sealing the hole. It does cause some trauma to the area, so I have some swelling and pain in my low back. I also have to avoid bending and straining for the first week, since the patch can break when it is still fresh.  So far, so good!

I will be having the CT scan and the DEXA scan performed in the next couple of weeks.

My symptoms in the past week have mainly been:
*Migraine for the last 3 days
*Erratic blood pressure
*Tachycardia, with occasional bradycardia
*Shortness of breath
*Pain in thoracic spine from the herniated disc.

I have been working on trying to get in better shape.  The symptoms have caused me to rest much more, which has caused me to become deconditioned, which only makes POTS symptoms worse.  So, we have started working on rebuilding my strength.  We've started by taking walks at the lake each day.  I sit in my wheelchair part of the time, and push the wheelchair (like a walker) some of the time.  The beach near our place has a large hill, where you can either take the stairs or the ramp.  So, we go up and down the ramp.  Today, I did a bit too much, so I am feeling terrible right now.  But I know it's important to get in shape if I want to feel better.  It's our free form of physical therapy.

I also did a short drive today.  Working hard at making progress.  But I'm still spending the majority of the day suffering from symptoms.  Each activity requires tremendous effort.  I am just glad to be out of bed some of the time, even if it feels like it makes me feel worse during the activity.  Overall, I hope I am getting stronger.  It will take some time.  It's only been 1 week of "physical therapy" so far.  Maybe in a month or two, I'll start to notice some symptom improvement.

The migraines continue to hinder so much of my activity, but I am trying to work through them.  I don't know if anything will reduce their frequency or severity.  I seem to have tried everything.

Here's the hill at the beach we've been climbing: