Recovering From Brain Surgery

Here are a few really good articles about the horrible recovery process after brain surgery. Isn't the brain remarkable? I'm also going to touch on a few of the items I'm having issues/difficulties with.

My brain after 5th surgery. One side is NOT like the other

http://www.brainline.org/content/2011/07/lost-found-what-brain-injury-survivors-want-you-to-know.html

http://www.everywhereist.com/20-things-you-can-expect-after-brain-surgery/

• When I lean my head forward, it feels like someone is squeezing my head in a vice. There is fluid on the inside and the outside of your brain after surgery. When you bend over, it creates an uncomfortable, painful sensation.  The more I bend down the tighter the vice gets. This makes things difficult - like putting my shoes on, sitting down, and picking things up. A little more than four weeks out and I'm almost able to bend over completely with no pain. I expect in the next week or so this will no longer be an issue.

• It HURTS to open my jaw. I've noticed this in past surgeries and always dread this. They cut the muscles that connects your mouth to your hairline during surgery. Put your finger on your temple and close and open your mouth and you will see what I am talking about. Eating has been fine, but yawning is painful and the dentist today was excruciating. 

  

  No fashion comments - Notice the lean

  
  
  "If your operation was near your temple (between the side of your eye and your hairline), you may find that your jaw is stiff and painful a few days or weeks after surgery. You may find it difficult to open your jaw. This is because the surgeon had to move or cut the muscles of the jaw during your operation. The stiffness gets better by itself in a short time. Making chewing movements or chewing gum helps." http://www.cancerresearchuk.org/about-cancer/type/brain-tumour/treatment/surgery/after-brain-tumour-surgery#wound

• Sneezing and Coughing: I think the body knows that it is damaged. My first sneezes were on 2/28, yes I recorded the date because I hadn't sneezed since my first surgery on 2/2. Oh yeah, it hurt. I was finally able to blow my nose without pain on 3/6. Coughing is a different story. It still hurts.

• Bumps: Driving over the smallest bumps on the road hurts my head like crazy. The drive from Stanford to our house was the worst 22 miles. I would cringe when I would see the car in front of me hit even the smallest of bumps in the road. This subsided about 2 weeks into my recovery.

• I can count the number of T.V. shows I've been able to watch on both hands since my surgery. The effect of the brain surgeries on my attention span is very REAL - it's been getting better with time, but it has been slower than I've experienced with my last two surgeries.  

We had a follow up with my Epilepsy doctor on Tuesday. I have physical, speech and occupational therapies on Thursday and Friday, an MRI on Sunday and Radiation Therapy begins this Tuesday, 3/17.

"Thoughts, feelings and most of the typing by Josh, organization and editing by Fay" 

Recovery Progress

Recovery is still at a mind numbing, slow and frustrating pace.

Speech: It took me 15 minutes to write the alphabet with a pencil today. The only letters I forgot how to write are a lower case "f" and "k". I guess that is progress. The little one (Hayden) is such a help when it comes to my nightly speech therapy homework.

Physical: The pain in my legs has been absolutely horrible - even just standing straight takes monumental effort. Two weeks of laying in bed caused the muscles in my legs to atrophy. 

I have a slight lean to the right side so I'm supposed to try and correct that which isn't as easy as it sounds. I'm already concentrating really hard on just walking and now I need to work on fixing the right side drift.

Thankfully, the leg pain has somewhat subsided the last two days and I have been able to do some light stretching and walking. It was a nice day out and I made my first "unsupervised" walk around the block! And, I walked around the track at Lincoln High School and went up and down the bleachers.

Spending time with the puppy has been good therapy too.

Occupational therapy starts next week.

I've been slowly tapering off the steroid that helps with brain swelling. I'm so glad I only have four more days on it. I cannot stop eating. Everyone laughs at me when I get to my meal. But, I can't control it.  It's Crazy!