Friday, May 1, 2009

Grizelda Update

I have been asked a lot of questions so I thought I'd answer them here. First, What is a lymphangioma? Answer: "A large soft tissue tumor composed of cavernous lymphatic spaces. This condition is rare." (I've always been a very generic person, but now I have claim to being one in a million!)

The second question concerns treatment. There are four options:
(1) Do nothing and hope it will go away. In my case, since this occurred in adulthood and not at birth and since it is growing so fast and recurred after being surgically removed doing nothing would mean certain loss of vision in that eye.
(2) Treat with steroids. This would mean long, long term usage of steroids which would not be good for me because of all the side effects, and there is no guarantee that it would shrink the tumor.
(3) Surgery again. This would mean going deeper and being more invasive which would be extremely dangerous and would almost certainly cause blindness.
(4) Radiation with the CyberKnife. Of all the options this is the one most likely to preserve my sight. There are risks with this also, the main one being swelling that would cause the same problems as the tumor. However, they are going to treat for the swelling while doing the radiation and when they went in surgically last December they left a hole from the brain into the orbit which will allow for a little room for swelling.

The last question is whether I have sought a second opinion. I have five opinions. Four of the five concluded that it is lymphangioma instead of hemangioma and say radiation is my only choice to possibly save the vision. The fifth gave an opinion that applied to the hemangioma. In addition, since this condition is so rare one of the doctors sought out other opinions from his colleagues on the Internet.

This has been a very interesting experience. Many people have lovingly offered advice and suggestions. I appreciate it so much. It has made me feel so loved and cared for that at times it brings me to tears. Thank you.

I have been given a blessing that more miracles are on the way, so I am still at peace, and to be truthful, I am enjoying all I am learning. It is amazing what modern science can do. The CyberKnife was only invented in 1990 and has been refined several times over the years. It is a fascinating instrument.

Now, as we begin the radiation, please pray that it will work with no side effect! That is the miracle we are seeking!


Anonymous said...

We live in wondrous times so I believe beyween the power of the Spirit and the great knowldge of the medical fields you will go through this and come out the other side with your eyesight preserved and your recuperation the best possible. Just rememeber how much your are loved and cherished. oxoxoxo

Anita said...

Is this a cyberknife that uses gamma radiation? If so, my father-in-law had a procedure done to remove a non-malignant tumor that had wrapped around his optical nerve. It was successful, so I know it works!

Sherrie Mills Johnson said...

Cathie, Thanks--again! Your words of encouragement are like honey to my soul!

Sherrie Mills Johnson said...

Anita, I needed to hear that! You are an angel!

Wendi said...

Thanks for the Words of Encouragement on your sidebar. I'm thankful to hear that you've received another blessing and that you're feeling at peace. I'll continue to pray that there will be no negative or lasting side effects to the radiation.