We saw the neurosurgeon with my brother yesterday - he said that the larger of my brother's two AVMs is 34mm...that sounds (and looked on-screen) pretty big to me. The surgeon says "in this case, size matters" and he talked about how the large one is in the speech centre and the smaller one is in the motor skills centre of the brain, so there are risks to treatment. I feel like he would have told us right then and there if the AVM was small. My brother has to go for a cerebral angiogram and an MRI (if the clips from his surgery in 1990 are MRI compatible) before they'll know how to proceed. I'm really hoping they'll get him in for these tests soon.
Does anyone else know if simply knowing the size of an AVM predicts outcome? Also, if anyone has comments on if it's possible to re-learn speech and motor skills if they are negatively affected after treatment, that would be good to know, too, as my brother is worried about that. Thank you!
Did the surgeon mention the Spetzer-Martin Scale? That is one way of stating the size. 6 is the largest I believe. My Daughter's AVM is a 4 or 5 depending on who[m] I speak to. Her AVM is inoperable in the standard surgical procedure due to the fact is in the cerebellum and burst into the brain stem. Her only option is Proton radiation, which she received in January, the hope being over the next 2-3 years it will shrink the AVM and then possible standard surgery. I would think a neurosurgeon could give you better nfo regarding the risks of the motor skill and speech loss and regaining both post treatment. All I can tell you is my Daughter had to re-learn to walk, talk, write,and eat after her stroke.. I only wish we knew of her AVM prior to her stroke I'll say some prayers for your family,stay strong and God Bless.
We were never told the size of my husbands AVM. They operated on my husband because I said to the Neurosurgeons that he use to walk the Brooklyn Bridge at lunch time. Then they said "oh Okay . because he was healthy they operated. He was 58 . The Neurosurgeons said this is not inherited, it forms in the womb at 26 weeks. Husband's was on the right side where it affected the motor skills on the left side. he is disabled , can't do much but he has his speech and his thinking processes. its been hard the last four years. The Neurosurgeons at NorthShore Hospital operated and removed the AVM. Thye clips were removed. They found a second hemmorhage when they operated. He has improved with the movement in his left side a little but not enough to be fully mobile. Now he has cancer. Kidney cancer and we think it is from 911. Its been a long hard four years but we keep going in the strength of God and one day at a time with God's help. Only one problem the Insurance Company won't give him anymore Physical Therapy saying he has plateaued.How old is your brother. If he's young he'll do good. There is speech therapy. I feel movement is so much more important.
Hi John,
I'm not to sure if this helps - my AVM was the size of an egg (60mm x40mm), it was flat bang in the centre of my 2 brain lobes, I had a stroke before they found the AVM, and initially they were going to perform radiation therapy but because of the size & location they (my neuro)decided on radical surgery - the stats was something like 1 in 4mil people, and that 1 was me. My neuro was brilliant!! The radical surgery was risky and I can say that I came out 'fine' although there was a time while in surgery that it was touch n go.
My rehab was over a period of 3 months - in which I had OT, Physio & Speech therapy.
Rehab was 'intense' as I had to relearn alot of things and even now I realize my limitations but with determination and prayer your brother will get through it. The docs said I'd never run again - and I have run again, I have completed 4x 10k races, 2x 5k races, 2x 8k races - your brother can do it. Even if the hill ahead looks steep - it is 1 step at a time, and by the grace of God, you are able to put that one foot infront of the next one, and continue to 'never ever give up'. He is very blessed to have a brother who is looking out for him as you are. Hope my bit of the journey helps!!! Bless you & your brother!!!
Hi Marc - hope you don't mind me posting you. I picked up on your comment about recent Proton beam radiation. My daughter is awaiting a consultation re. proton beam. (She has an inoperable thalamic AVM which they were unable to embolise) I know that the proton procedure is not without risk BUT I'm really hoping that they agree to treat her as she doesn't really have any other management options. She's only 3 and I'm so terrified about a re-bleed. Did your daughter have a single treatment or fractionated dose? I'm sure it was traumatic for you all ...any advice?
Brother, after all your brother's been through, I believe you should ask for a family meeting to ask all the questions you have. I think the Doctor's dont' understand what you are thinking unless you plan a family meeting and ask them your questions. My family did the same thing when my Mom was sick and also when I had my brain bleed. Good Luck. Stay Strong!
My husband has a 3cm AVM directly under his speech centre. In 2003 when he was 49 he had 2 aneurysm's ruptured on the MCA which feeds his particular AVM and he had emergency surgery to have them clipped. The AVM did not burst.
He did regain all his movement. However, he has aphasia. Receptive mostly. He can not read, write, (well, technically he can write, you just can't understand it). He can not follow most conversations unless people look at him directly, speak very slowly and use simple words. But, nobody ever does that for long.
I took him all around the States to get opinions and options on what we should do about his AVM. Most of them recommended radiosurgery, one said his AVM was no big deal and that he could operate and remove it, in hind sight I'm angry that Dr was so blase about how serious these speech centre AVM's affect people's lives.
We have decided to leave his AVM intact. We are under a Dr at the University of South Florida who we trust with our lives and it is his opinion (and almost every other surgeon has agreed with this) that his AVM is at the upper reaches of what radiosurgery can fix, and that having the laser go through his speech centre to hit the AVM will only cause more damage to the speech centre.
His life is already so badly affected by his aphasia that any more damage would be a disaster.
After his aneurysm, he went through all the therapies, we continued his speech therapy until his insurance ran out, after about 4 months. I sat in on every session so I could reinforce and continue the therapy at home, and, yes, it did help, but I really don't think that much.
Anyway, I'm carrying on a bit, but I just want you to make sure your brother gets many opinions, don't rush into it, do your research and never underestimate the impact of apahsia on his life and his families life.
Good luck, I understand how hard it is, dealing with all the unknown risks involved. One thing I asked every Dr was if they could give me their best estimate in percentages on how they thought their course of treatment would work. Eg, my husbands chance of being totally incompacitated by radiosurgery ranges from 30-40%.
Good luck, I feel for you and your brother, I really do.
Hi Em,
Enbol was too risky for my daughter; it could create a rise in blood pressure which could cause another bleed. I anguished over making the correct decision for her. I spoke with 6 of the leading AVM people around the country. Some said embollize, then radiate, one actually said he could cut it out which was totally ridiculous. He will go un-named here but let me say he is supposedly one of the best in the world. I finally put my faith in Dr. Edward R. Smith and Dr. Michael J. Rivkin from Boston Childrens Hospital. They were there from the night my daughter was med flighted to Boston. I consulted with them for approximately 7 months and they helped me make my decision on who[m] to go with and what treatment was the best{safest} for my daughter. They both told me "if it was my daughter I would".... I finally decided on Proton Radiation treatment at Massachusetts General Hospital Proton Therapy Center, Dr. Paul H. Chapman. He has done hundreds of these and is a wonderful, caring man.
My daughter had 2 doses one week apart. Can I ask you if your daughter had a bleed? Mine did, and she stroked as well. Any responsible doctor will tell you that the Proton Beam will not prevent a bleed, it is done with the hope of shrinking the AVM over time. I was told approximately 2 years before she could have another treatment. If I were you I would contact Dr. Chapman directly and consult with him. As I said i spoke with many of the leading people and weighed all the options before deciding. Please feel free to get in touch with me directly if I can be of any assistance to you. ■■■■■■■■■■■■■■■■■
My AVM was pretty small-1cm. but I have heard that the small ones are more likely to bleed. There are many examples of people who have regained speech and motor skills. My speech wasn't affected but my motor skills have gotten considerably better since my bleed. I couldn't get up at first, used walker and now can walk with assistance if I go slow and focus. There is a good book called Stroke of Insight by a brain scientist who had a severe bleed and recovered most of her abilities over time.
Found this article:http://radsurg.health.ufl.edu/resources/images/avmsize.pdf
How old is your brother? Mine was 9mm at the base of the tip, and I still have speech and motor problems. I am sure it is different for everyone. The angiogram and MRI should tell more, and there should be no problem from either of those 2 "tests." My prayers are with your brother...
Thank you so much - what a coincidence...we are actually under the care of Ed Smith at Boston Children's at the moment and he has just referred us to Dr Chapman at Mass general. Dr Smith and all of the staff at Boston Children's have been brilliant.
My daughter had a bilateral ventricular bleed 3 weeks ago and has just been discharged following an emergency decompression. We are so relieved to have her home (with relatively minor neurological deficit) but obviously now our minds are turning to the future....
Thank you for offering your direct e mail. I'm not sure what questions I need to ask at the moment, but I may well be in contact if you don't mind. It is a huge relief that someone else in my position has put their faith in these individuals. Thanks again.
Em,
I am very happy to hear that. When you speak to either of them again feel free to tell them you spoke to me...my daughter's name is Theresa. I'm pretty sure they'll know who you're talking about. I'll pray for your daughter's complete recovery. Feel free to contact me.
Marc
I'm embarrassed to even be part of this "club", not that is something to be ashamed of, but I was very lucky for mine to be in my intestinal area. But none the less it did wreak havoc for me for over 2 1/2 years when it burst, causing severe anemia. My entire family, including my own mother turned their backs on me so I had zero support from my family. I guess they didn't believe the reports of my anemia being that low, 5.1 hgb....all they could do is transfuse me every other week. I had over 50 blood transfusions...which meant 2 days in the hospital as I'd have reactions, low grade fevers and difficulty functioning. IF or when I went anywhere was by wheel chair or electric scooter.
I went to church camp meeting, my younger brother scoffed, made fun of me.
THIS destroyed me more than the AVM did. But after was discovered my Crohns disease caused several feet intestines very inflamed, I have a bowel resection after the swallowable pill camera got stuck. The gifted surgeon had taught surgery at Loma Linda Univ Hospital before "retiring" here in Oregon area. When he removed several feet of my smaller intestines, he looked carefully to see if was the cause of my bleeding. His years of experience told him it wasn't and he spent another half hour searching my entire upper intestines and found the baseball sized AVM...he told me that is a wonder I'm still alive as it had burst several times...no wonder I fainted, heart rate 200+ beats per min...He said my guardian angel was watching over me several times...he shook his head as he told me "Cheryl, YOU should NOT be alive!"...but sadly after my two bowel resections, I battle absorbtion issues and became so B12 deficiant it damaged my spinal cord...so I have Peripheral Neuropathy all over my body! I also have a long laundry list of autoimmune issues, Arthritis and Fibromyalgia cause me joint and muscle pain. Sometimes I wish I could just "go home" and be done with life.
My family is back to talking to me, but I've never been told "why"...my moms has aggressive Alzheimer's and my husbands tongue cancer returned. He was 36 when first diagnosed...doesn't touch tobacco or alcohol. Maybe my family just couldn't handle seeing me so ill. I don't know...but honestly...this has changed me drastically as my self esteem destroyed as is my self worth. I'm not a bad person and didn't deserve any of this.
I find that by helping others and decorating for church functions a way to keep my mind off my problems.
One thing I'd like to say is standing by your loved one who is suffering ANY illness is what we need just as much as having our AVM's removed and or dealt with.
I'm sorry for those much younger who are suffering, brain, spinal cord AVM's have got to be the worst! I wish there were some magic dust to fix it all...if I did, I'd share some with you! But I don't and all I can do is say a few prayers for you and your loved ones. The Lord has His reasons, but I sure would like to know...WHY? Blessings to All...Cheryl Rae Young aka CRY
After reading your story, any self-pity over my situation went away. So sorry you have had to deal with so many terrible things
I can only share what happens if the AVM ruptures as in the case of my son, Brandon. www.brainanurizm.ning.com
Hello CRY, I am so sorry for what you have gone through. I do love reading that you are involved with church. I told my son Brandon, whose avm burst in his brain that there should be a group called disabled of faith. They have women of faith and promise keepers for men. Just a thought but anyways be assured you have our prayers. Pix of Brandon are at www.brainanurizm.ning.com...Keep pressing on!
hi,
my mother has avm that was large the largest the doctor had seen (we were told) i dont know exact measurements, my mother had glue on her to shink it then they discussed removal which wasnt needed in the end, my mother had a stroke during one of her ops she lost speech and couldnt move one side of her body but after 6 months ot threapy and help she was working and living like nothing had happened, i hope all goes well x
i had to relearn ALL my motor skills each time (retrain my eyes, how to hold a cup, sit up,brush my hair, walk ect...)it is possible, but you really have to be strong and a bit angry (at the AVM) to work hard and not get depressed at what you CAN'T do, consintrate and work towards what you WILL do, and if it all doesn't come back, Be thankful for what you CAN do. I have had to do it 3 times in my life 1972, 1988,and 2006...sometimes it would take a couple years to get to "as normal as I get" but worth the hard work and pain, though I am not now nor will I ever be 100%, I am happy to be alive.
thanks Tina...will remember your Brandon in my prayers as well as those suffering here. I guess my trials with my AVM much easier than all those I've read about.
I had no idea what an AVM was until I are one! LoL!
Just hope never have another one!
I know one day all this will be over and we'll be home with the Lord...where we were meant to be...if we hang onto Him...He will tell us WHY He allowed some to suffer more than others. Blessings to all...Cheryl Rae Young...CRY!
No. The size doesn’t predict the outcome. If it did my son would most definitely be dead and buried. Sorry to hear about how big that sucker is, but it is nice, comforting to hear about others with gigantic AVMs. Sorry I can’t find the right words to describe how I feel about hearing about your brother’s AVM. My son also had a huge monster in his httead. I joke about it being a grade 20. Docs consider anything larger than 3 cm to be grade 3. So what grade would they give one that was 3 inches by 3 inches by 4 inches? My David had his on the Vein of Galen in the back of his head. It went the whole way across the back (up and across) and into his head to about his ears. Basically the whole back of his head. He also had an aneurysm the size of my fist on the left side of Vein of Galen that pressed on the opening where his CSF drained down his spine. And he was only 3 mos old and was 4mos when they did the first surgery and 5mos for the second. My son had no complications from first but had a “small” stroke and RSV after second. He was given 1% chance of survival and 1to3% chance of complete normal. Not the best odds but he beat them. And he had a bleeding disorder that we didn’t even know about! We were told that we might have problems later on but so far it seems like that the problems we have are more from shunt failure than anything else. Even his weight issues seem to be from CSF pressure moving his coils against his brain. Docs thought that I was crazy but I proved it enough for them to look into it. He only has a golf ball sized mass of coils in between his outer and inner brain and it weighs about a pound. When he was unconscious for 25 days and not eating how did he gain weight?
Anything seems to go with the huge AVMs. Nothing seems unlikely. But I have a gut feeling that they are actually easier to embolize if you go that route. The brain seems to adjust better because it involves more of the brain and it can heal itself easier. It might takelonger and have more widespread “damage” but I feel that the brain seems to be able to heal itself better that way. It’s like the difference between spraining your ankle and breaking it. A sprain you have to wrap, ice and baby it for weeks and you still mess it up again and again. But if you break it, you fix it, cast it and its done. It might be weak for a while until the tendons and muscles heal and it might be a little different but it works almost like it used to. Be back in a minute. Gotta go to computer, phone dying