Saturday, May 17, 2008

Quality vs Quantity

I read a post on the Ependymoma list today. It was from a woman whose husband is paralyzed from the neck down. I asked her if his paralysis followed surgery on his ependymoma. She replied that the medical community won't say exactly what caused the paralysis, but her hub never learned to walk after the second surgery he had and they think it may have been the radiation he never should have had. After I had surgery, my neurosurgeon said that was it as far as surgery benefitting me anymore. Further surgery would just interfere with the quality of life I had. After checking in with a neuro-radiologist and radiation oncologist in Dallas at Baylor, we were told that my tumor infiltrated the brainstem and radiating the brainstem can cause more problems to my quality of life than any benefit in stopping the growth or shrinking the tumor including myelitis (inflammation and swelling of the spinal cord) and brainstem necrosis (death of tissue.) I decided not to take the risk of these conditions that would interfere with my quality of life. My quality of life (QOL) is not perfect now, but I still have bladder control, my vitals are good and even though I am weak and have very poor stamina, I can still walk and I have a good degree of independence and QOL.

1 comment:

Anonymous said...

I really agree! I am a HUGE fan for quality of life!

I had cancer 15 years ago and had to face the quantity of life issue. After experiencing disappointments and frustrations with NF2, I have come to find my battle with NF2 more difficult as it keeps chipping away at quality of life. Yes. You can live but you can also have some devastating things happen to you. For me, with cancer I went through 6 months feeling like crap and then I got better and life returned to normal. While I think it is important to keep searching for a way to stop tumor growth, I feel it equalily important to pursue research into combating and alleviating the side effects from NF2 as our whole quality of life hinges on it.

Who wants to be alive but stuck not being able to see and move? The loss of hearing is frustrating at times but I can deal with it. It seems so insignificant in comparison to the other losses of function we go through.

Beck