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
How small is AVM? How many cm?
Where in Cerebellum is it located?
Is this considered “deep” or in “deep brain”?
Can you show on model where in cerebellum this happened?
What “grade” is my AVM & what does that refer to?
Is it true that small AVMs are more likely to bleed again?
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?
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?
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?
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?
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?
Why would it have stopped bleeding?
What are the characteristics of the feeding artery and draining veins of my AVM?
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
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?
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
If surgery is option - How many surgeries of this type have you done?
Other types of less invasive brain surgery possible: UPMC – Neuroendoport Surgery, narrow tube into tiny incision in scalp?
STEREOTACTIC RADIOSURGERY:
Can you explain how it works?
How are types different?
Cyberknife
Gammaknife
Proton Beam
Which one do you use?
Who would perform this?
Where would it be done?
How long would it take?
Would I be awake? Any medication?
Recovery period?
What is evidence of success with this radiosurgery for cerebellar bleeds specifically?
What are risks of radiosurgery for cerebellum?
If AVM is obliterated, what function is lost because of that? What about possible damage to the area around it?
How do you compare these risks to risk of rebleed?
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?
How do you know if radiosurgery has worked? How long does it take to work? Do you follow up with angiogram? How long after?
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?
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.
Do you know of any support groups of any kind for people with AVMs?
DOCTORS EXPERIENCE
How many people have you treated with AVMs over the years?
How many other patients have you had with AVM in cerebellum?
GENERAL
If Hemorrhage happens again what will treatment be?
If it is larger hemorrhage, what would/will treatment be?
WHAT CAN I DO:
Should I fly? Can I travel to LA or Boston to see family and docs there?
What kinds of exercise are okay/not okay?
Should I not do yoga again?
Can I go back to personal trainer, using weight machines once a week? (2-3 minutes, then increase weight)
Could Stress be related?
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:
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”
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?
Wow, that is a COMPREHENSIVE list of questions! Good Job.
I think in order to not be overwhelmed, you might organize them under the headers of treatment options:
Surgery
Embolization
Radiation
If you first find out that one or more of these are included/excluded, you can focus your questions. No use learning all about embos if they are not for you.
When he / she explains these, I would like to hear for YOUR CASE what each option has for Pros/Cons to you. Potential to fix it versus risk. That might help shake out which course of action to take. It might help to know the best case/worst case scenario of each plan.
One question we always found was useful once you heard these options was “If this was in your head (or spouses or child’s), which option would you choose?” You might get a feel, just make sure he doesn’t say “well, surgery of course (if he’s a surgeon)”, etc. I think most will be honest with you.
Numbers of patients they have treated with YOUR type of AVM and Treatment plan seem important, along with success rates.
Sounds like you have a great support system.
Openness to work with other centers for the best approach to your AVM is good.
Big question might be how long to wait? I understand wanting to get well from the stroke, but you don’t want to risk having another before fixing the AVM… Tough call.
I’m not sure with where you are (recently finding the AVM) but, I know that I flew, but I already had embolization and Gamma Knife; I’m not sure what they will tell you. The pressure changing with take-off, and all that, they may not want to… Just a thought…
AND, about your sister, no matter what the doctor says, I personally would say go have a MRI done. When things happen in a family, it makes you realize and want to know for sure. If the MRI came out good; then that can take a weight off your shoulders.
Like Kimberly said, I have no idea where you are with this today (you posted at the beginning of 2010) and I hope your relatives have had MRIs and everything turned out well. But I just wanted to add that because of this site I learned that some (but definitely not all) AVMs are hereditary and can be passed along to family members. This is known as something called Hereditary Hemorrhagic Telangiectasia (HHT, aka Osler-Weber-Rendu). These are usually associated with frequent nosebleeds but that certainly doesn’t prove anything. Here’s a website on this: http://www.hht.org/about-hht/. For more information you can type in HHT in the upper right hand search box on this site. If you haven’t already done this, there is a test that can eliminate the possibilty of HHT if it’s still a concern for you. Best wishes!
It's good to be prepared, my son had the steriotactic-radio surgery in October last year. I know of the side effects but believed the risk of anything happening was less than the effects the AVM could have on him if it decided to bleed. Twelve months on and Ethan's had an MRI he has an Angeo next year when the radio-surgery's finished working! We saw the specialist last week and his AVM appears to be gone. Ethan didn't suffer any side effects ( God forbid) and I'm so happy I decided to go through with it. Be strong I know there's risks but Ethan was 8 and he's been great abit emotional but that's it. My doctor said it's not usually something that runs in the family and Radio-theraphy was the second best thing to embolisation. which they tried with Ethan but because of the location it would have been too dangerous to continue. If you have any other questions feel free to ask. my emails ■■■■■■■■■■■■■■■■■■■■■■■. Good Luck and have Faith. xxxx
Mine never said that, however he didn't go into detail about the risks too much as Ethan's only young he would definitely have a bleed again before adulthood which could have been fatal. They said the risks of treatment far out weigh the risks of leaving it. As a mother you feel worried about your decisions as if anything did go wrong through a decision you'd made it would horrible. Go with what the doctors say. but don't leave it. Ethans was in the middle of his brain, the doctors said surgery was possible however because of how deep routed it was was more dangerous than radio-surgery. Ethan has been absolutely fine. I know that's not the case with everyone but so far he's been the same as every other little boy. good luck with Elizabeth. xxx
My Husband found out over a month ago he has a Brain AVM, we have waited over a month now to see consultant ( they lost him on the system grgh..) but have found your questions helpful as i am so confused about it and he is not talking about it at all really so feel I am the only seeking questions although I am sure it will be different once we do get to see someone, thanks though ! x
I know you have a lot of unanswered questions but there is no way really to answer all your questions. even the Doctors are unsure.
My wife had a bleed last year March and in April 2011 had a Gamma Knife. Since then she had 3 events with tingling in her right arm. One being last night. She is on Keppra and weaning off Dilantin.
They say these are side effects of the Gamma Knife treatment as the AVM shrinks causing inflammation around the surrounding tissues. I worry constantly about her and never leave her alone unless there is someone around.
They say the Gamma Knife is a wonderful treatment and has a high rate of success. My wife's AVM is 4cm and located to close to her motor functions, so they can not take it out. Hoping to shrink it down to a safe level is the goal. Thr rebleed is generally, 1% chance a year but you can not predict what will happen.
I hope you do well.
I found the part you wrote regarding the MRI on “white matter lesions which are non specific” interesting because my MRI report said exactly the same as yours. Did you ever find out what it meant. I mentioned it to my doctor but was told it was nothing to worry about. But I thought why mention it on the report if it was irrelevant, I think I will ask again when I next meet with them.
Thanks all for your comments, I actually have much more updated lists of questions that I should post now (although not on this computer). After I wrote these current questions, the docs suddenly took my case more seriously (becuase the AVM was found) and instead of seeing the less exerpienced neurologist they had me meet with a more experienced neurologist and then i inisted on meeting with the actual neurosurgeon at the hospital i was origially sent to who was recommeneded. They wound up recommending a brain surgery to remove the AVM rather than radation becuase my AVM was relatively close to the surface of my brain (1 inch-1 1/2 inch). The i got 2 second opinions becuase i was terrified of that, and wanted someone to tell me i didn't need the surgery. My 3rd opinion was at mass general, and Dr. Olgilvy there was MUCH MORE HELPFUL with answering ALL OF MY QUESTIONS. And becuase of rish of a re-bleed I sceduled surgery with him with in a month of meeting him. My AVM resection was on April 2, 2010. Almost 2 years ago. The survey itslef went well, but then i had complications, my brain swelled, it went unnoticed right away and they evenetally drilled into the top of my head to reduce the swelling. (before i was completely out of it I told them that FDR was the predisdent and said that my brother in law was my son). I was in ICU for 10 days rather than 3-4 days that they had stated, and i couldn't walk or use my right arm well after i came back into conciousness. But Mass General Has excellent phyical and occupational therapisted that started to help me right away. I had to learn to walk again, with a walker first and then a cane, and i stayed in boston for a month, longer than i expected. Now, most people would never guess that i had a stroke, phycially i look a lot better and walk nearly normally. my balance is still off at times. but i rode a bike (carefully with a helmet) for the first time since the stroke a few weeks ago. However, my concentration and ability to funcition well for a full normal day is not back to normal still. I am seeing a good neurologist and psychiatrist and lifting weights and exercising more again to try to get back to normal. But I can't think clealry all day long. I tried to go back to work full time but found it was impossible. I cut back to 25 hours a week at first and now work 30 hours a week with come difficulty, but find it rewarding most of the time. I am looking into seeing a coginitve psychiatrist to do some congnitive testing, but need to find a way for insutrance to cover that. My life is really good for the most part, I appreciate every second with my son now more than ever, since i know it can all go away for one reason or another in the blink of an eye, so i make every moment count that i can Some things are frustrating, as many friends think I am totally back to normal and like to argue with me when i explain that i am not or dont understant when i dont have the mental or physical energy to do something. Anyways, i try to hlep them "get it" but sometimes give up, and enjoy the time with them that i can. Everything is now a balancing act - pun intended given the cerebellar bleed and my issue with balance toward the end of the day mostly. Linda, just one unexperienced doctor told be the white matter on my MRI could have been sure to a previoous iscemic stroke, but other docs have told me that is baloney and it is more likely due to a fall at a young age or something. One of my sisters had had a CT scan after a disabling migrane, and they did not see anything
My twin sister has yet to have any kind of scan, despite the suggestions of more than one Doc at MGH to her in person while she was visiting me in ICU. She insists, that she saw how sick i was after brain surgery that she would never have it done herslelf even if she found an AVM. She prefers to have her head in the sand apparently. I dread the day i might get a call from her husband that she has had a stroke too, as the docs are pretty concerned and think she needs to get checked. But i also have a feeling that she doesn't have one, just an instinct, so i dont worry about it too much.
Thanks for this post. I am going to use a lot of these when I go in 3 weeks for my follow up. I have not had surgery, mine is near the brain stem but it is small.
My son collapsed in June of 2011 from a ruptured cerebellar AVM. His was in a coma for approximately a week, ICU for five weeks and acute rehab hospitalization for another five. He's been home since September. He lost ALL coordination and balance all over his body -- from head to toe. From the intricate muscles in his mouth and throat to his finger tips. He has had to learn or regain ALL skills and functions. Currently, he is walking (almost independently) with a walker and doing really well in OT, PT, & speech therapy. He is swallowing now (has been for many months), can feed himself, use his computer, text, use the TV remote control, put most of his clothes on with little help.
When his hemorrhage first happened, the team of doctors at Mercy General in Sacramento, CA argued over how to treat his AVM (bleed). A interventional radiologist fought to try "embolize" to repair rather than go straight to surgery. That's what they did. The feed a narrow catheter through the femoral artery (groin area). They initially shot dye through the catheter to the brain to see the AVM (called an angiogram) in its entirety, then to embolize it, they shoot a gelatin-like substance (in my son's case, called "Onyx) through the catheter to "plug up" the AVM -- in other words repair it. It was successful -- considered a 100% repair. In December, he had a follow-up angio gram to look at the area again, and it was still plugged with no residual bleeding, no other AVM sites -- it was considered "obliterated". This interventional radiologist told us that they reason he fought to "embolize" rather than allow surgery is because when surgery is done, there are almost always additional deficits (limitations) that occur as a result of the surgery. I know all AVM's are not right for embolization, but you should ask about that option. Now my son goes to outpatient rehab and he's met two other young men that had AVM's, that had surgery. One of them is 10 years out and no where near where my son is with his recovery. I know his AVM was bigger and in the cerebellum AND brain stem. Mabe he HAD to have surgery, but maybe not. Ask about EMBOLIZATION as an option to repair you AVM.
I'm so glad to hear that these questions were helpful to you! I chose my brain surgeon after meeting 3 of them - the third one was willing to patiently answer my questions IN DETAIL and i met with both a surgeon and the guy that does emobizations, at MASS GENERAL Hospital in boston. The were the best listeners and didnt give me short glib responses. I went with brainsurgery and im sure it was the right thing to do even though i had some complications, since my AVM is totally gone. The other two surgeons i talked to did not give me specific answers to my questions and just thought i was worrying too much. They took me seriously at Mass General.
Thank you for that information as my wife had embolization in her brain.And they inserted a glue type substance.I have heard that certain glues that they use wear out after time. I have not asked our Doctor but will. My wife had a Gamma Knife treat 1 1/2 yrs ago and will be checked in April to see any progress was made for shrinking. We hope your Son recovers completely. Sound so scary.
