Appt. with Neurosurgeon this Wednesday

Hi!

I finally have an appt. scheduled with a neurosurgeon. I see a Dr. Bryan E. Figueroa, MD this Wednesday. What questions should I ask? I have a giant AVM. 11cmx7cmx7cm. I’m not sure exactly where it is in my head. Instinct is telling it’s too large to do anything with it without causing devastating physical disability.

Help!
Chary

Well, I’ll start it off…

And don’t be too discouraged by the size. When Chari’s (Cool name you have by the way) AVM first showed up, and I think it was 5CM, the consensus was it was too big to treat. Looking at her scans, it covered the left half of her brain. Well, 2 radiations, a half dozen embolizations, and micro surgery ten years later and her’s is GONE. Remember also that every year you progress gets you one more year of medical advancements.

Recommend you type up the questions, leaving spaces for his answers, or write them out. Worst feeling in the world is getting out of the office and remembering 3 things you wanted to ask. If someone is going with you (family member/friend), give them a copy of your questions. They are to write down what they hear as the answers to each question.

If the doctor steps out of the office before you are done, compare notes on what you heard so you can clarify any differences in what you heard. We did this every trip to a DR about the AVM. I’m amazed how much better we felt. As we thought of questions days before the appt, we wrote them in our book, so we would remember them.

Here’s what I would ask (and I don’t know how yours showed up, etc):

You say I have an AVM. Is that the only medical issue you see right now?

How large is the AVM and how do you classify it?

What areas of the brain is it in, and what functions are controlled by those areas?

For my AVM, what options do you see as viable treatments? If he doesn’t include “Doing nothing right now”, ask him about it.

Please describe each of these and the risk/reward issues associated? Please identify the potential deficits I might experience with each.

What is your recommendation as to treatment? (Remember, he’s a SURGEON, so his answer bias might be toward surgery!).

Please outline what the procedure you recommend would entail, length of hospital stay, estimated recovery time, and time required to assess success of the treatment.

What advancements in treatment of my type AVM might be on the horizon?

How many of this size/type/location of AVM have you treated? What is your success rate?

And finally, the coup de gras: IF THIS WERE IN YOUR WIFE’S HEAD (or child’s), WHAT WOULD YOU WANT TO DO?

My brain is empty now. I’m sure there are more, but this should get you started.

Best wishes,
Ron, KS

WOW! Thank you for all the time you put into typing that up and all the brain flexing it took to come up with all those questions! I really appreciate it. I’m going to copy and paste them. My brother is coming with me to the appointment so I’ll be sure to give him a copy too. Unfortunately, my husband can’t get time off of work to go with me. Again, thanks!

Ron, KS said:

Well, I’ll start it off…

And don’t be too discouraged by the size. When Chari’s (Cool name you have by the way) AVM first showed up, and I think it was 5CM, the consensus was it was too big to treat. Looking at her scans, it covered the left half of her brain. Well, 2 radiations, a half dozen embolizations, and micro surgery ten years later and her’s is GONE. Remember also that every year you progress gets you one more year of medical advancements.

Recommend you type up the questions, leaving spaces for his answers, or write them out. Worst feeling in the world is getting out of the office and remembering 3 things you wanted to ask. If someone is going with you (family member/friend), give them a copy of your questions. They are to write down what they hear as the answers to each question.

If the doctor steps out of the office before you are done, compare notes on what you heard so you can clarify any differences in what you heard. We did this every trip to a DR about the AVM. I’m amazed how much better we felt. As we thought of questions days before the appt, we wrote them in our book, so we would remember them.

Here’s what I would ask (and I don’t know how yours showed up, etc):

You say I have an AVM. Is that the only medical issue you see right now?

How large is the AVM and how do you classify it?

What areas of the brain is it in, and what functions are controlled by those areas?

For my AVM, what options do you see as viable treatments? If he doesn’t include “Doing nothing right now”, ask him about it.

Please describe each of these and the risk/reward issues associated? Please identify the potential deficits I might experience with each.

What is your recommendation as to treatment? (Remember, he’s a SURGEON, so his answer bias might be toward surgery!).

Please outline what the procedure you recommend would entail, length of hospital stay, estimated recovery time, and time required to assess success of the treatment.

What advancements in treatment of my type AVM might be on the horizon?

How many of this size/type/location of AVM have you treated? What is your success rate?

And finally, the coup de gras: IF THIS WERE IN YOUR WIFE’S HEAD (or child’s), WHAT WOULD YOU WANT TO DO?

My brain is empty now. I’m sure there are more, but this should get you started.

Best wishes,
Ron, KS

Not a problem on the response! It’s not like they are new–they are the ones we asked over time.

I had planned to spend Sun - Tues on my sailboat–wife is in Seattle visiting our daughter, but it is RAINING at the lake. And raining here. Got lots of time on my hands.

Would suggest that you/brother sit down either at the dr building, or over coffee next door, and compare notes right away while it’s fresh in your minds. Any serious disconnects, you can call back or ask next time.

Best wishes, and let us know how it goes.
ron, ks

Chary,

I agree with Ron. Ask questions and get answers. I just had radiation. I had two embolizations prior. My neuro’s felt my avm wasn’t a candidate for surgery…too risky. I’m glad that they gave me another option. I even considered leaving it alone but outweighed the pros and cons and figured the best was to treat it.

Keep me posted. You will be in my thoughts and prayers.
Rachel

Congratulations on taking steps to get rid of your AVM. I think location is really important vs. size. Mine was smaller than yours, but unoperable until recently due to the location (deep & on motor strip). If I could give you some advice: take a digital voice recorder to your appts. I have all my medical appts tapes and on my computer, so if I have to go back to review what the doctor said, I can do so. It also frees me up during the appt to actually hear what the dr. is saying and ask questions vs. writing. Also: GET A SECOND OPINION. Surgeons are incredibly bright, but they are human and driven by their own set of motives. I was misdiagnosed by my neurologist and a neurosurgeon, and I had to be proactive and insist on getting referred to another surgeon (neurooncology) who promptly told me that I can and most definitely should have my AVM removed. Just be glad you have a way to remove you AVM and today’s technology should serve you well. I wish you luck!!