Journal entry by tami klabon —
We could feel your prayers of strength today, and for that we give many thanks! The vibe from Nussbaum was better today compared to two weeks ago and he apologized for his indifference. He explained it was due to not really having a clear answer to provide. Actually, he still couldn't give us a definitive direction, instead provided us with 3 options and gave his opinion on each. He was at Mayo Clinic last week for a conference that a lot of top neurosurgeons attended. He was able to present Brenna's case to 3 neurosurgeons that he greatly respects. He got 3 different opinions. 1- do nothing; 2 - operate; 3 - radio surgery(a type of radiation treatment that is non-surgical). They all come with risks.
Option 1 - Do Nothing:
Nussbaum consulted with a neurosurgeon from NY(Columbia) that he highly respects. He voted to do nothing and to wait and see if she has a re-bleed due to her age. She could start a drug called Propanolol, which is a type of beta blocker. There is spotty research showing taking this drug could help diminish a re-bleed. Also this is a pretty benign drug that if taken would not be concerning for ill-effects long term. You may be asking, what would happen if she has a re-bleed? Research shows that the risk of a re-bleed could be as low as 10% and as high as 40%. Dr. Nussbaum describes not knowing if she has an "angry" malformation or not. He says that he has had patients that re-bleed after 3-6 months and that is what he describes as an "angry" malformation(we don't want angry). Otherwise it may not happen until 5, 10, 12, 15, 20 years! We just don't know. If it did re-bleed she would have neurological symptoms such as double vision, slurred speech, facial weakness, or weak hand/leg like she had. The risk of a life threatening re-bleed is super low. If she does re-bleed, then we do another MRI and review these options again.
Option 2: Operate:
The neurosurgeon from Florida recommended doing surgery knowing risks of permanent or semi-permanent facial paralysis, guessing about a 20% risk of this. I was grateful that Dr. Nussbaum empathized with Brenna in knowing this would have a negative effect re: her psychological well-being given she is so young. This option would get rid of the malformation and we would never have to address it again, but the risk of damage is definitely there and only a select set of surgeons would be willing to do it.
Option 3: radio surgery(a.k.a cyberknife or gamma knife):
A neurosurgeon for NY(NYU) recommended radio surgery. Nussbaum highly respected this option as this guy only does it once a year at their facility out of 30-40 cases that are presented to him. When he saw Brenna's case, he said she would qualify for the 1 they do a year. This specialized type of radiation(you don't lose your hair) causes "damage" to the malformation so the walls of the malformation would react to this "damage" from the radiation and thicken it walls like scar tissue. It would not get rid of the malformation, in theory it is strengthening the walls to help prevent a re-bleed. Research shows that it does not eliminate a re-bleed. The controversy is in doing nothing compared to doing this treatment, is is the re-bleed percentage that much lower? Plus there is a mild risk of damage to the brain.
Brenna's decision with parent input:
She decided on not doing anything for now. Jake and I agree. The sense of relief on her face was priceless. She is going back to work and feels more comfortable hanging out with friends. She is immediately talking about what she wants to buy for her apartment at Stout...The weight of anxiety was devastating the past 20 days. Thank you all for your prayers. I hope Brenna realized all the positive people God has put in her path. More recently when getting a job at Express in Woodbury, the support and positivity and caring they have shown her has been immense. They could have easily let her go. Many thanks to Dr. Cress from Stillwater Medical Group who knew something was wrong and got the ball rolling. He actually left her a voice mail yesterday telling her that he had been thinking about her. He is BEYOND! Meeting with Dr. Mendez and Dr. Nussbaum....all of you in our wonderful community of Hudson, our church family at Shepherd of The Valley and from places far away. Jake, Drew, Brenna and I are so thankful.
Now What:
Our journey is not over, she is not cured but at least we have a decision for now. A decision we are comfortable with. We ask for continued prayers (I am acknowledging that I am a prayer hog, but I believe in it and don't care that I am asking for more prayers - LOL). Thanks again for all you have done! God IS good!
Option 1 - Do Nothing:
Nussbaum consulted with a neurosurgeon from NY(Columbia) that he highly respects. He voted to do nothing and to wait and see if she has a re-bleed due to her age. She could start a drug called Propanolol, which is a type of beta blocker. There is spotty research showing taking this drug could help diminish a re-bleed. Also this is a pretty benign drug that if taken would not be concerning for ill-effects long term. You may be asking, what would happen if she has a re-bleed? Research shows that the risk of a re-bleed could be as low as 10% and as high as 40%. Dr. Nussbaum describes not knowing if she has an "angry" malformation or not. He says that he has had patients that re-bleed after 3-6 months and that is what he describes as an "angry" malformation(we don't want angry). Otherwise it may not happen until 5, 10, 12, 15, 20 years! We just don't know. If it did re-bleed she would have neurological symptoms such as double vision, slurred speech, facial weakness, or weak hand/leg like she had. The risk of a life threatening re-bleed is super low. If she does re-bleed, then we do another MRI and review these options again.
Option 2: Operate:
The neurosurgeon from Florida recommended doing surgery knowing risks of permanent or semi-permanent facial paralysis, guessing about a 20% risk of this. I was grateful that Dr. Nussbaum empathized with Brenna in knowing this would have a negative effect re: her psychological well-being given she is so young. This option would get rid of the malformation and we would never have to address it again, but the risk of damage is definitely there and only a select set of surgeons would be willing to do it.
Option 3: radio surgery(a.k.a cyberknife or gamma knife):
A neurosurgeon for NY(NYU) recommended radio surgery. Nussbaum highly respected this option as this guy only does it once a year at their facility out of 30-40 cases that are presented to him. When he saw Brenna's case, he said she would qualify for the 1 they do a year. This specialized type of radiation(you don't lose your hair) causes "damage" to the malformation so the walls of the malformation would react to this "damage" from the radiation and thicken it walls like scar tissue. It would not get rid of the malformation, in theory it is strengthening the walls to help prevent a re-bleed. Research shows that it does not eliminate a re-bleed. The controversy is in doing nothing compared to doing this treatment, is is the re-bleed percentage that much lower? Plus there is a mild risk of damage to the brain.
Brenna's decision with parent input:
She decided on not doing anything for now. Jake and I agree. The sense of relief on her face was priceless. She is going back to work and feels more comfortable hanging out with friends. She is immediately talking about what she wants to buy for her apartment at Stout...The weight of anxiety was devastating the past 20 days. Thank you all for your prayers. I hope Brenna realized all the positive people God has put in her path. More recently when getting a job at Express in Woodbury, the support and positivity and caring they have shown her has been immense. They could have easily let her go. Many thanks to Dr. Cress from Stillwater Medical Group who knew something was wrong and got the ball rolling. He actually left her a voice mail yesterday telling her that he had been thinking about her. He is BEYOND! Meeting with Dr. Mendez and Dr. Nussbaum....all of you in our wonderful community of Hudson, our church family at Shepherd of The Valley and from places far away. Jake, Drew, Brenna and I are so thankful.
Now What:
Our journey is not over, she is not cured but at least we have a decision for now. A decision we are comfortable with. We ask for continued prayers (I am acknowledging that I am a prayer hog, but I believe in it and don't care that I am asking for more prayers - LOL). Thanks again for all you have done! God IS good!
Patients and caregivers love hearing from you; add a comment to show your support.
Help Brenna Stay Connected to Family and Friends
A $25 donation to CaringBridge powers a site like Brenna's for two weeks. Will you make a gift to help ensure that this site stays online for them and for you?
