I had a bleed in my cerebellum 3 months ago, and they just finally found my AVM a week ago. I meet with a neurosurgeon on Monday and I think he is going to recommend some type of radiation treatment. These are my long list of questions for him in categories I came up with. Let me know if you have any thoughts on these questions or ideas of how to handle this meeting or what to expect. Thanks!!!

MY AVM

1. How small is AVM? How many cm?
2. Where in Cerebellum is it located?
3. Is this considered “deep” or in “deep brain”?
4. Can you show on model where in cerebellum this happened?
5. What “grade” is my AVM & what does that refer to?
6. Is it true that small AVMs are more likely to bleed again?
7. Dr. Vidal (Neurologist) on several occasions said if I had an AVM then 1-2% chance of a rebleed per year, but hospital sites quote 4% or higher per year. What do you think likelihood of a rebleed is for me?
8. Dr. Milborne (interventional radiologist) said that my AMV was too small for him to embolize. Does this mean that he could not get close enough to embolize it because catheter not small enough or did he mean something else?
9. Why wasn’t AVM seen on first angiogram? He compared to image on old angiogram and couldn’t see it then. Does that mean it has changed in size/shape since last one?
10. I want to understand the mechanics of this. Can you draw a picture of what my AVM looks like? &/or show me on angiogram pic?  (show AVM pic from Stroke of Insight book – Does it look like this or different?
11. How does an AVM or my AVM bleed – is the blood seeping thought the vein because it is thinner? Is there a hole? Or did it burst in one spot?
12. Why would it have stopped bleeding?
13. What are the characteristics of the feeding artery and draining veins of my AVM?
14. Could I have an AVM somewhere else too? When then did Angiogram, did they look all over my brain or only in areas around bleeding?

TREATMENT

15. Research I have done indicates that surgery is best treatment if in an area it can be completely removed. Is this an option for me?  Why? Why not?
16. Things to consider when deciding if surgery is an option:

Age

Location of malformation – is it accessible?

Size of malformation

Bleeding

Symptoms

How fast growing

17. If surgery is option - How many surgeries of this type have you done?

18. Other types of less invasive brain surgery possible: UPMC – Neuroendoport Surgery, narrow tube into tiny incision in scalp?

STEREOTACTIC RADIOSURGERY:

1. Can you explain how it works?
2. How are types different?
   1. Cyberknife
   2. Gammaknife
   3. Proton Beam
3.  Which one do you use?
4. Who would perform this?
5. Where would it be done?
6. How long would it take?
7. Would I be awake? Any medication?
8. Recovery period?
9. What is evidence of success with this radiosurgery for cerebellar bleeds specifically?
10. What are risks of radiosurgery for cerebellum?
11. If AVM is obliterated, what function is lost because of that? What about possible damage to the area around it?
12. How do you compare these risks to risk of rebleed?
13. Mayo Clinic Website sites a specific study with radiosurgery for AVMs in “Deep Brain” that indicates less than 50% success without additional deficits. These results don’t sound good to me. Why do this? Are there other studies that show more success?
14. How do you know if radiosurgery has worked? How long does it take to work? Do you follow up with angiogram? How long after?
15. Can I wait 3-6 months or even a year before having this done to recover fully from stroke first and resume working before becoming a patient again?

16. My sister was an Emergency RN at Mass General and my brother is being treated there for cancer, my family is in Boston, would you be interested in consulting with doc up there?….I’m considering getting an opinion through them or even being treated up there because of family support there. I also have family in Los Angeles, and Cedars-Sinai may be another option for me.

17. Do you know of any support groups of any kind for people with AVMs?

DOCTORS EXPERIENCE

19. How many people have you treated with AVMs over the years?

20. How many other patients have you had with AVM in cerebellum?

GENERAL

1. If Hemorrhage happens again what will treatment be?
2. If it is larger hemorrhage, what would/will treatment be?

WHAT CAN I DO:

1. Should I fly? Can I travel to LA or Boston to see family and docs there?
2. What kinds of exercise are okay/not okay?
3. Should I not do yoga again?
4. Can I go back to personal trainer, using weight machines once a week? (2-3 minutes, then increase weight)
5. Could Stress be related?
6. I work as a site manager – position is supposed to be a minimum of 50 hours a week but I often worked more. I supervise 5 full time staff and 50 part time staff with the help of the people I directly manage. I will try to keep to 50 hours a week or less when possible. Do you think this is reasonable?

MRI QUESTIONS:

1. This was noted on my MRI, now that you have found an AVM does this bring any light to other issues on MRI?

“ Impression:

Left frontal lobe white matter disease, these findings are nonspecific, but may be due to an inactive demyelinating process, vasculitis, or other microvascular disease”

2. Does this suggest that I could I have an AVM somewhere else too? Or something else going on?

FAMILY  QUESTIONS:

There is a history of migraines with all 3 of my sisters, but I’m most concerned about identical twin sister who has migraines and has persistent numbness in arms, should Twin insist on MRI too or a CTA?