My daughter was 6 when she suffered a massive bleed from an AVM in January 2009. She had an emergency craniotomy at the time and another one earlier this year after the AVM re-grew. She has plenty of deficits, though they’re pretty invisible to those who know nothing about brain injuries. But she walks and runs and goes
to school, so she’s pretty fortunate.
I was 8years old when it bleed in 1991 in Ireland. Have a very good doctor and hospital staff. Still in touch with some staff today and im 26now. Best of luck with your book.
My husband was 39 when he went to the hosp for numb face and numb foot, we found out about the blled then. had surgery the following week and had a stoke during the surgery. we found out his grandfather had same malformation and his bleed ruptured of course this was almost 50 yrs ago. He’s had good days and months and bad were having a bad time know looking to find any avenue to help, He’s willing to go anwhere and try anything
My avm came in 1991 when I was 27. I was in a coma for 1 1/2 years. I am now in a wheelchair, which is a small price to pay. Hope this helps a little.
i was 25 and it was 2009 it hit me out of no where
I was 1991 and I was 27 yrs old when mine burst. Lucky (if you want to call it luck) it burst at a hospital. I was then lifelined to a bigger hospital. 1 1/2 yrs later, I awoke.
My son, Austin, was two when his AVM hemorrhaged in January 2007. He had no symptoms before the bleed. As a result he has left side hemiparesis and has been in PT/OT every since.
Hello Michael,
First of all i am glad to hear that things went so good for you after the descover of the AVM. My brother is 30 years old , we descoverd the AVM 2 months ago, March 2010, when he had a seizure . We are going for the first embo in June. I wish you good luck with your book. It gave me a little hope to see that the AVM’s can have a “happy end”.
Laura Ionescu
Hi Michael,
Wife was 40 in 1991 when her AVM presented via grand mal seizure. In retrospect, she was having some numbness and visual issues a year or so earlier, but attributed it to aging. Her AVM did not rupture, and she was RXed anti-seizure meds at the time.
Having never heard of AVMs, we started searching. Since the internet was just coming of age, we did some “online” research. The best source was we joined a medical publication site (can’t recall the name) and paying $X per hour, searched for medical articles referring to AVMs. We were able to pay to download the abstracts of the articles, and more to download the whole article.
One name that kept occurring in our articles was Dr Kjellberg of Mass General in Boston. Our local neuro sent her scans to him, and he suggested we do Proton Beam Radiation, which we did about 1992. Followup two yrs later showed no change in size, but no way to know if the AVM vessel walls had gotten tougher, which is what is supposed to happen.
We did more searching, and armed with her records, drove to see the heads of neurosurgery at UCLA and Stanford. UCLA (at the time) had treated about 300 AVM patients, said to wait. Stanford having treated 3,000 AVM patients, suggested embolizations and PBR, which we did about 1996 - 1998. By 98, the AVM was 90% smaller and Stanford suggested microsurgery to remove the rest, which we did.
AVM is now GONE, but wife is still on anti-S meds as there is still abnormal electrical activity which could cause seizures.
I think several things are in play when you talk about number of AVMs and treatment going back 20 years. Certainly the medical advances are HUGE. But the communication side might skew what you are looking at; all of us here are 'puter savy and we freely communicate around the world about AVMs. Think back to 1998: Middle aged folks then were not into 'puters as much as we are now. You could have an AVM at that time or earlier, but if you weren’t 'puter savy, no one outside your immediate circle would know about it.
When we were at MGH with the 1st PBR, we met a man in his 50’s (I’m guessing), who had had a “stroke” about 20 years earlier, which would have been about 1972. He had “stroke” damage and difficulty walking. It was only when his old neuro retired and he went to a new neuro did he discover: he had not had a stroke–the new neuro did one eval with him, and some tests. No stroke, but untreated AVM. So for 20 years, he went without treatment. I’ve not heard from him following PBR, so don’t know his fate. But I suspect there are more diagnosed from the 70’s and before as stroke, not AVM.
Dr Kjellberg was one of the pioneers of PBR and as I understand, did a lot of radiation testing on monkeys overseas before it was tried on humans. He died about 1994 (?) of lung cancer being a chain smoker. The Loma Linda PBR Dr was _____ Levy. In talking with him about 1998, he said he was just starting his career in PBR, knew Dr K, and it was like the young pup and the old man arguing. Dr K was using low dosage, which protected good tissue more, but wasn’t strong enough to kill the AVM, according to Dr Levy. He said they argued a lot about dosages.
I think there is a lot of good collaboration now about AVM treatments, but I don’t know how we gain access to that. Nor do I think there is one good answer for any AVM. I think there are so many variables, picking a treatment solution for a patient still involves a lot of speculation: Size and location of AVM, bleed/no bleed, impairment/no impairment, quality of life non-treatment vs risk of treatment, and on and on.
For us, the best source to help filter and guide us to a solution were local neurologists. They have the basis for knowing what they are reading and have the background of OUR specific AVM. We found several over the years who were able to access where we were, know the scope of the AVM, and were able to suggest what might be the best course of treatment for US.
Hope this helps.
Ron, KS
Hi Ron,
First, I’d like to thank you for your very informative response. You are absolutely correct in your statement regarding access to the internet as we can both transmit and receive information at the blink of an eye. Moreover, the numbers of AVM cases are more readily available at least to those who can access the internet. It’s worth noting that there are still large numbers of cases worldwide which go unreported due to lack of access to medical care as well as ability to communicate as quickly and easily as we can.
What I have learned so far is that an AVM can affect anyone at any age and at any time. Obviously, we would all prefer not to go through the experience and suffer the pain both physically & emotionally if there was a way of predicting when an AVM might occur and how we might prevent the episode. However, it is encouraging to know that with new advancements in medicine doctors have been able to improve the survival rate and diminish the number of people who have long-term disabilities.
I wish your wife well and as I remind those around me, think positive and never give up!
Regards,
Michael
Ron, KS said:
Hi Michael,
Wife was 40 in 1991 when her AVM presented via grand mal seizure. In retrospect, she was having some numbness and visual issues a year or so earlier, but attributed it to aging. Her AVM did not rupture, and she was RXed anti-seizure meds at the time.
Having never heard of AVMs, we started searching. Since the internet was just coming of age, we did some “online” research. The best source was we joined a medical publication site (can’t recall the name) and paying $X per hour, searched for medical articles referring to AVMs. We were able to pay to download the abstracts of the articles, and more to download the whole article.
One name that kept occurring in our articles was Dr Kjellberg of Mass General in Boston. Our local neuro sent her scans to him, and he suggested we do Proton Beam Radiation, which we did about 1992. Followup two yrs later showed no change in size, but no way to know if the AVM vessel walls had gotten tougher, which is what is supposed to happen.
We did more searching, and armed with her records, drove to see the heads of neurosurgery at UCLA and Stanford. UCLA (at the time) had treated about 300 AVM patients, said to wait. Stanford having treated 3,000 AVM patients, suggested embolizations and PBR, which we did about 1996 - 1998. By 98, the AVM was 90% smaller and Stanford suggested microsurgery to remove the rest, which we did.
AVM is now GONE, but wife is still on anti-S meds as there is still abnormal electrical activity which could cause seizures.
I think several things are in play when you talk about number of AVMs and treatment going back 20 years. Certainly the medical advances are HUGE. But the communication side might skew what you are looking at; all of us here are 'puter savy and we freely communicate around the world about AVMs. Think back to 1998: Middle aged folks then were not into 'puters as much as we are now. You could have an AVM at that time or earlier, but if you weren’t 'puter savy, no one outside your immediate circle would know about it.
When we were at MGH with the 1st PBR, we met a man in his 50’s (I’m guessing), who had had a “stroke” about 20 years earlier, which would have been about 1972. He had “stroke” damage and difficulty walking. It was only when his old neuro retired and he went to a new neuro did he discover: he had not had a stroke–the new neuro did one eval with him, and some tests. No stroke, but untreated AVM. So for 20 years, he went without treatment. I’ve not heard from him following PBR, so don’t know his fate. But I suspect there are more diagnosed from the 70’s and before as stroke, not AVM.
Dr Kjellberg was one of the pioneers of PBR and as I understand, did a lot of radiation testing on monkeys overseas before it was tried on humans. He died about 1994 (?) of lung cancer being a chain smoker. The Loma Linda PBR Dr was _____ Levy. In talking with him about 1998, he said he was just starting his career in PBR, knew Dr K, and it was like the young pup and the old man arguing. Dr K was using low dosage, which protected good tissue more, but wasn’t strong enough to kill the AVM, according to Dr Levy. He said they argued a lot about dosages.
I think there is a lot of good collaboration now about AVM treatments, but I don’t know how we gain access to that. Nor do I think there is one good answer for any AVM. I think there are so many variables, picking a treatment solution for a patient still involves a lot of speculation: Size and location of AVM, bleed/no bleed, impairment/no impairment, quality of life non-treatment vs risk of treatment, and on and on.
For us, the best source to help filter and guide us to a solution were local neurologists. They have the basis for knowing what they are reading and have the background of OUR specific AVM. We found several over the years who were able to access where we were, know the scope of the AVM, and were able to suggest what might be the best course of treatment for US.
Hope this helps.
Ron, KS
My AVM raptured in 2007 and I was 26 yers of age when it happend.
Hi Michael,
My daughter was 16 when she suffered a grand mal seizure while at the county fair (3/2007). She had focal seizures where she lost her language for 30-45 seconds several times prior to this. Had talked to interist Dr. about it, but she said to wait and see. A couple weeks later…the seizure happened and we found out about the AVM in her left temporal lobe. Had gamma knife 6/07. Now her 3 years are up and she will have another MRI next week to see where she stands. Her NS said gamma knife only does its job for 3 yrs then it stops its magic. I’m praying it worked!
Jmo said:
Jan Verstraete said:My AVM ruptured in 1982 (March 7). I was 18 at that time. I had a craniotomy in 1982 and this was followed by 2 embolisations in 2005 and 2006.
Jan Verstraete
Hi Michael, I don’t know when you will get to read this as there have been so many responses and everyone is different. Like everyone else I was born with it. There was some activity in my early teens, loud popping noises in my left temporal lobe, that I could hear and feel. The doctors at the time did not have any answers and thinkinking back on it now, they didn’t do anything to persue it. It stopped pretty much for awhile but then as I got older it started again occassionally. In my very early 40’s i startrd having auras/partial seizures whatever, but I knew I didn’t “feel right” and would go to sleep for awhile. After these episodes, my ability to concentrate, inability to do the automatic 100 steps you do in your in your job, etc. were impaired, etc.I was also starting to “lose words”. No rhym or reason to what was lost just that it would be gone. I have many years of university, etc. (not that it makes any difference) and it would drive me nuts. When I went to the doctor, I was told to stop working so much and eat differentas my blood sugar was low and that was causing it. When I moved back to Nova Scotia in 1997 is when it started getting worse. The first one being when I was staying with my parents while I was waiting for my house to be rewired. I had just got home (they lived over half an hour from where I had bought my house), we were sitting at the table talking and all of a sudden I couldn’t talk or move and I passed out. After ambulances to the hospital (the first one broke down midway) I again was told low sugar. It went on from there getting worse (being out to dinner with friends and all of a sudden they were speaking a different language- I didn’t understand a word. I soon learned that it passed after a bit so I didn’t get so stressed when it happened. The final one that actually got the diagnosis (2003?) was again we were out to dinner with friends and all of a sudden I was “gone” and slid off my chair. It was the first one that I didn’t feel coming. (These are just the bigger events; there were alot of others. I woke up on the stretcher with the ambulance attendant trying to put an oxygen mask on me and in midsentance of “I’m going to bite you” (which I was told I had already said as I didn’t want the mask on). This time at the hospital the doctor said that losing my words had nothing to do with low blood sugar and told me I would have to go for some other tests. I finally did after being phoned and nattered at (I was back at university and working 2/3 time) and a few days later my regular doctor called me at work and said that I had to see a specialist in the city (over an hour drive from where I was). I gave him my usual “when I have time” and he said “No Elaine. Get up from your desk, put your coat on, get in your car and go. They are waiting for you” End of summaray of part 1 which is all I’m putting in as it is much more than what you asked. As to age: I was born in 1955 and I will be 55 this year. I certainly don’t feel the age and people say that I don’t look it (may be unsubstantiated to make me feel good) and don’t act it. Please excuse the typing mistakes, I should have been in bed a couple of hours ago.
it was year 2004 when i was diagnosed with AVM but not in the usual area, i have it in my right foot. first i was diagnosed with cavernous hemangioma year 1998 after i had my first operation. it started when i’ve noticed that my right heel was starting to enlarge but i was under pediatrics that time so they referred me to orthopedics and had xray on my right foot which showed a mass so they operated on me then.i had regular follow ups on my doctor then, no recurrence of mass seen during x rays. so after that i was ok, not until 2004 it came back, so i had MRI/MRA done and they scheduled me for operation again to ligate the suspected feeding vessel, supposedly we expected the mass to shrink after the surgery, but unfortunately, it didn’t, until now. I can’t walk with my right heel anymore and got used to it anyhow…i’m giving my weight when i walk to my toes, and i’m a nurse by profession by the way, so it’s really hard for me. then i had this non-healing wound for almost a year now. it dries up then freshen ups again every now and then. i had my CTA done last year and sought consult again and they gave me 2 options, embolization and surgery. but after they’ve seen my CTA, doctor said that embolization won’t work in my case, because my AVM is very distal, it’s already at the end part of our body so no catheter could reach it. so no other choice now but surgery again… BUT! my doctor now is having second thought if we’ll push through with the operation, he gave me 3 reasons. 1st, it will be very bloody and i will have massive blood loss. 2nd, i might not be able to use my right foot again. 3rd, it’s really very expensive, i will be needing a vascular surgeon, orthopedic surgeon and a plastic surgeon. and i’m only 25 years old that’s also a reason why he doesn’t want to operate on me because i’m still too young to loose a foot.
15 years old the bleed occured on May 11th 2008!
2008 and 16 years old
I was 27year 11mouths old. I was in a bad car wreak. I keept passing out and they could not fig out the reasion at first and would just say it is the TBI. One mouth later they found my AVM when doing an MRI with contrast. The first MRI showed it but know one had see it for some reason. Gamma knife in 05. I still have bad migrans at lest 3 times a mouth. I get wiped out fast when doing stuff.
I still here and try to out reach to other every day!
I have an AVM and was diagnosed in 2004 at the age of 37. I also have Klippel Trenaunay and was diagnosed with this about a year or two earlier. It’s located on my spine t4-t6.
Michael,
My first avm was when I was 35 and was treated with an embolization. The second and third ones were discovered 15 years later, this year. One was treated with another embolization and the last one with a craniotomy this December. I was told they were not hereditary but, if you learn differently I would sure like to know about this for my children’s sake. Also, when you worked in the aviation field were you a pilot and if so how did you get your medicals renewed. I am an instrument rated pilot and was told to expect 3-10 years before FAA would o.k. me for PIC.
Mine was August 10th, 1991. I was 27 at the time and didn’t have a clue what an AVM was. Mine was on the brainstem, and now I’m in a wheelchair. I have accepted it because I believe that is a small price to pay concidering I was in a coma for 1 1/2 years!