Post by von on Jun 12, 2013 17:20:34 GMT -6
Nani, did they cut part of the tumor out? I'm a bit confused.
I've got a full tumor T10-L2 as well as multiple cysts. Porter @ Barrows in Phoenix said cutting the tumor out was too risky. The neurosurgery board @ Barrows recommended radiation therapy. It has been a hard experience, symptoms for me are much worse than before it, however, I'm 1 year post-radiation and I've been told I'm going to have to wait 2-5 years to see how things work out. One of the cysts was caused directly from the radiation itself (as it appeared after radiation), the swelling was rough.
When I was on steroids, I functioned just fine, as well as a girl can with a giant tumor in her back. I was pulled off the steroids right after radiation. Without the inflammatory control I lost feeling below the waist and bladder control. It's slowly (very slowly) healing over time. Those issues are becoming better. I still am on 1800 mg of ibuprofen daily. Was on nothing presurgery. Honestly, I can't say whether I'd recommend it or not to you, I'm just not far enough into it to be able to know for certain.
I know one thing, I am disappointed with the followup and the level of pain I had to endure following it. So, I do suggest, have a plan in place, multiple docs if needed. So that if you don't feel well after, you have a course of action laid out.
Hoping maybe someone who has had a similar experience can share. I just don't feel like I have enough experience to be able to tell you anything for certain.
I've got a full tumor T10-L2 as well as multiple cysts. Porter @ Barrows in Phoenix said cutting the tumor out was too risky. The neurosurgery board @ Barrows recommended radiation therapy. It has been a hard experience, symptoms for me are much worse than before it, however, I'm 1 year post-radiation and I've been told I'm going to have to wait 2-5 years to see how things work out. One of the cysts was caused directly from the radiation itself (as it appeared after radiation), the swelling was rough.
When I was on steroids, I functioned just fine, as well as a girl can with a giant tumor in her back. I was pulled off the steroids right after radiation. Without the inflammatory control I lost feeling below the waist and bladder control. It's slowly (very slowly) healing over time. Those issues are becoming better. I still am on 1800 mg of ibuprofen daily. Was on nothing presurgery. Honestly, I can't say whether I'd recommend it or not to you, I'm just not far enough into it to be able to know for certain.
I know one thing, I am disappointed with the followup and the level of pain I had to endure following it. So, I do suggest, have a plan in place, multiple docs if needed. So that if you don't feel well after, you have a course of action laid out.
Hoping maybe someone who has had a similar experience can share. I just don't feel like I have enough experience to be able to tell you anything for certain.
