Replies to This Discussion

ModeratorPermalink Reply by Ron, Kansas on February 20, 2010 at 8:30pm

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.

Best wishes,
Ron, KS

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Permalink Reply by Kimberly Anderson on November 2, 2011 at 11:50am

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.

Kimberly

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ModeratorPermalink Reply by Suzy E on November 6, 2011 at 12:51pm

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! :)

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Permalink Reply by lauren myers, Ethans mum on November 12, 2011 at 4:43pm

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 laurenmyers13@yahoo.com. Good Luck and have Faith. xxxx

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Permalink Reply by Elizabeth's Mom & Dad on November 13, 2011 at 5:45am

Stereotactic Radiosurgery:
Is there an increased chance of a bleed after radiosurgery? Our doctor informed us there is.

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Permalink Reply by lauren myers, Ethans mum on November 13, 2011 at 6:40am

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

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Permalink Reply by just julie from the block on December 3, 2011 at 7:43am

looks like you're well-prepared.

I guess I would want to know how this could efect me and what my options are and why.

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Permalink Reply by Amanda on December 11, 2011 at 6:40pm

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

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Permalink Reply by Andy Lee on December 15, 2011 at 2:12pm

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.

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Permalink Reply by Linda on January 31, 2012 at 7:55am

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.

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Permalink Reply by Larisa Diephuis on February 5, 2012 at 1:28pm

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

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Permalink Reply by Larisa Diephuis on February 5, 2012 at 1:33pm

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.

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