It is very important to come prepared in order to feel confident that your neurologist/neurosurgeon knows about the condition. Chances are he does not know much. However, try to find a neurosurgeon that specialize in Vascular malformation/disease, and chances are he knows more.
I found that it is crucial to find a doctor that is confident in what he is talking about. If he sounds unsure, he probably have never seen a patient with this condition. Here are questions to ask:
Questions to ask your Neurologist.
- How many Cavernoma(s) do I have?
- Where in the brain is(are) my Cavernoma(s)Located?
- What does (location in which the cavernoma is located) control in the brain? (this helps you to identify new symptoms)
- I have (this and that) symptoms (don't spare anything, as little as you think it may be) Do you think its related?
- Has it bled before? (If more than one, which one (what location) bled? )
- If it bleeds again, how “bad” can it be; what deficits can I end up with?
- How much experience do you have with Cavernoma/Vascular Malformation?
- What are the signs to look for to indicate a new bleed?
- According to my current symptoms, is there anything I need to avoid? (for example, anything that would elevate my pressure, like working out or anything strenuous physically gave me simple partial seizures. I was told to avoid getting my heart rate elevated)
- If my symptoms get worse, when should i go to the ER?
- Should I come see you if I develop new symptoms?
- How often should I get a MRI?
- I do (job) for a living, is that putting me at risk?
- Should I go see a neurosurgeon?
- Can you refer me to a neurosurgeon with experiences in Vascular Malformation?
If your CM has bled, most Neurologist will want you to see a Neurosurgeon to see if surgery is an option. A lot of Neurologist will suggest the “wait and see”. I suggest that you do see a neurosurgeon anyway, just to have a better idea of everything.
Questions to ask your Neurosurgeons.
- Have you resected Cavernous Malformation before? If so, what location of the brain? How are the patients doing?
- Are you experienced in resecting cavernoma in (the location)?
- If the neurosurgeons tells you that he can, indeed, operate, ask him if he would do it strictly in case of emergency to save your life, or is he capable of performing surgery while you are still doing well, to avoid such a situation.
- What are the deficits I could have from the surgery?
- What are the deficits I can have from further bleeds, if I chose not to have surgery?
- If he is telling you to “wait and see”: What new symptoms would be an indication that surgery would be preferable?
- If I have a new bleed, would it be better to have surgery?
- If the neurosurgeons tells you it is inoperable, ask why. He will most likely say “location”
If your neurosurgeon tells you right off the bat that your CM is inoperable, this simply means that "he" cannot do it. has either never done it, or has done it with poor results, like the majority of neurosurgeons. That is why the brainstem is always "inoperable", unless you happen to have one of the best to diagnose you! There ARE Neurosurgeons that do indeed operate on the brainstem successfuly. Here is a list of the best ones. If he does tell you that he would operate if he "had to", that is simply an indication that he believe surgery to be the last resort, only to be performed as a emergency to save your life from a sudden bleed. The CONFIDENCE level of your neurosurgeon EQUAL most of the outcome! NO neurosurgeons in the world is going to tell you they can operate just for the fun of it. IF your surgeon tells you that, indeed, this is something he can do, with decent outcome and no major loss of quality of life, you can truly consider having surgery with him/her. Take the time to find out how many brainstem surgeries he/she has done and what the outcome for the patients were. Surgery is a very hard decision to make. None of us want to wait until we have a major bleed/stroke, and have to have surgery with a surgeon that does surgery simply because he was there, and save our life, but most likely leave us with severe handicaps. After many months of regrouping datas from people who chose to have surgery versus the ones who didnt, I wrote a post about my findings HERE. Maybe that could help you a little bit with this heart wrenching "damned if you do, damned if you don't" decision.