Last week was filled with many doctors appointments for Bailey.... We asked lots of questions and got lots of answers. An NF team came in to examin Bailey and were quite interested in her case.
Bailey has Neurofibromatosis, and a brain tumor that first appeared to be an Acustic Neuroma or Meningioma....but a further look into this, the doctors aren't so sure.
So what is it? No one can be sure, until it is removed....but now the doctors are thinking of NOT doing a surgery. Instead they may watch the tumor for growth. Now I know these guys have YEARS of experience and probably know what they are talking about, but this just doesn't seem right.
The drs in Spokane were all set to do surgery and get the tumor out of there...while the drs here are using the watch and wait approach. Who is right? And how do we know which direction to go?
So, while Bailey is away at camp, the doctors and I are forming a plan. The first thing we need to do is rule in or out Cushing's. This is necessary because if it IS Cushing's, we can find out if THIS will require surgery--possibly coordinate it with the brain tumor surgery.
Bailey will see Endocrinology next week and have some more tests....But for now, she is having a blast at camp. Living in the moment is where we are at right now.
Does she have NF1 or NF2?as Acoustic tumors are usually NF2 ??
ReplyDeleteHUGS the wait and watch sucks:(
Hi Kristi! I have so many brain tumors that we do not know the exact number. I was diagnosed in 1999 with NF2 and have been on the wait and watch approach since then only getting treatment or surgery when absolutely necessary (radiosurgery in 2004, brain surgeries 2007 and 2009). It is true that one cannot be COMPLETELY certain the exact tumor type from an MRI. Often, as in my case, I have had meningiomas growing next to and INTO an acoustic neuroma. With the first surgery, the radiated tumor looked smaller but was actually larger once they got in there. For the second, a mass that was thought to be 2 tumors which grew together were actually 4 and 3 different tumor types.
ReplyDeleteI learned at the NIH that the tumor mass operated on last fall which there is still a large portion remaining, it is difficult to tell through MRI exactly which tumor is showing growth.
I hope Bailey is doing well!
I feel for you as I do not have any children and talking about something that heavy must be quite a stressful burden. I know several parents you can connect with who have had to address that issue of having a brain or brain tumors diagnosed in their children. Just let me know if you would like me to connect them with you.
PS - I have been coming across quite a few on facebook who have been diagnosed as showing facets of both NF1 and NF2. If I am recalling correctly, it seems it has been common among hereditary cases. I am a mutation and the only one with NF in the family.
I wish you the best and HUGS!