My son Ryan was 26 yrs old when he had the seizure that was last year 2009 August. He was in his 3rd year of Law School and graduated at the top of his class in May . He wrote for the law review and studied for the bar ( took and passed the bar in July ) all whole having embolizations every 8 - 10 weeks for a year and a half now . He is an inspiration like you are Michael. I am a very proud mother. I wish you well and please do know that while I do not know directly what it is like to go through what you and Ryan and so many here have been through, I do know I support each and every one of you in your faith in the process and perseverance, your fitness and character. I believe it changes one forever and there is no going back. A view of life that is real and palpable in its appreciation for the "NOW". I respect that most about Ryan and how he has handled all of this . I see many have handled this very strange and dangerous anomaly . I keep a loving faith filled vigil for those afflicted and those who may not know as yet .
I had just turned 18 in 2005. And that is when i discovered it and then months later had surgery and radiation done. Please keep us updated on your book i would love to read it and see another persons point of view with an AVM
Gosh, I am very happy for you because your AVM didn't result in any long time medical condition. Well, I had mine at 50yrs (2007) just one month after my birthday. I am blessed because the only difficulty I have is with my gait but I walk off and on with a cane.
As for my memory, software programs, meetings, and important dates...I am very lucky because I remember everything. However, I do find myself not being able to locate items or remember names but that was an issue "before" so in a nutshell I am fortunate. I do consider myself lucky.
All the best to you in this New Year 2011..may we both continue to be positive and live a long life. (smile)
So glad to hear successful story like yours. My son only 15 has avm in his right frontla lobe and the neurosurgeon reocommended surgery. I've read so many frighten post surgery side effects such as seizure, headache, personaltiy changes etc. did you ever experiences any of those side effects? Are you on any medications? Still debating whether we should go for surgery or radiation.
I was 19 years old when the doctors found my avm after a brawl on June 26, 2006 though I was only 14 when the ground pounding headaches and jokes about going for a ct scan from friends and family came about. wish I had taken them seriously now. My first embolization was just this week on the 15th, and the next is setup for march 3rd, Iām in the dark as to what happens after that but I know there will be another embolization and possibly surgery to remove the AVM.
I was 20 (11 years ago) when I found out I had an AVM and had a bleed at 22 and 28. Went for Gamma in Sept 09ā and am keeping my fingers crossed that one day soon I will be rid of it!
Hi. I believe my avm bled the first time when I was a junior in high school in 1988. It felt as though someone had turned a torch on in the right side of my body. I was struck down, screaming... thought I had been struck by lightning. I fell to the ground and could hear myself screaming outside my body. The doctor was baffled and sent me home telling me I had "bad gas". I didn't experience any other symptoms and went on with my life (fearing the pain would return, knowing it was not "bad gas"!) Ten years later I experienced another burning sensation in my right lung. This time I was told it was a muscle spasm. Left leg numbness and loss of sensation accompanied this. Two months later I was finally diagnosed with the avm in my spinal cord.... May 1998.
I was 7 years old after i had been horse riding ! the horse was too strong and my right hand hurt thats when it first bled! 17 had finger taken off now at 44 due formy 2nd op next week.! x hope this helps Laura
Interesting survey. I believe that the AVM on my scalp was congenital (from birth), I suffered petit mal seizures from age 9, and every time my scalp was sore before the seizure. I have been going back to the doctors now for 18 years with various symptoms in UK (I'm British) and have only just been told by an opthalmologist that I have an AVM. I'm 42 next month!! The symptoms have mostly been to do with my left eye, where, when I bend over, I get excruciating pain behind the eye and feel like it's going to pop out of my head. It was diagnosed as sinus pain without any proof that anything was wrong with sinuses. After medication didn't work I came off it and have just "lived with the pain" ever since. That was until I noticed a small protrusion coming from my eye when using a neti pot about a month ago, freaked me out, went to my optician, then to an ophthalmologist, then his diagnosis.
Everything I've read about AVMs, thanks to groups like this and lots of information online, totally makes sense with the sensations and symptoms I've experienced for as long as I can remember. At last I'm getting some answers. Like you say, medicine has moved on, thank goodness.
Looking forward to the book. I live in Calgary, AB now. Regards.
Just diagnosed this past October 2010 at age 50ā¦ cited as an āincidental findingā as a result of a cat scan after falling off a ladder. Jeezā¦ all I thought was that I broke my arm Turns outā¦ no broken bones but an AVM instead ā¦
Michael, like yourself I was told in Sept. of 1988 that my blacking out and totaling my car was due to an AVM in the vien of Galen in my brain. My local hospital and the Neuro's on staff were smart enough to tell me, "There are bigger fish in the sea then us" Hence a trip to Mount Siani in New York city. There a Dr. Malis told me he could cut it out. Not quite got a second opinion in Boston at Mass. General. The anwser is Proton Beam therapy and away we went to Havard Cycleatron center. Screws, ratchets into my cheek bones and the back of my head to hold the Halo on that would project the Beam in the right spot. The noise of the ratch turning the screws into my head and face was almost enough to make me sick even though I was numbed for this. Nothing it was supposed to shrink. 15 Angios later and three syrgery's placing Platinum coils to divert, slow and stop the flow of blood elimanating the "Brewery" in the Femoral artery that even my GP could hear. Do you remember the Burn in your eyes when they pumped the dye when they did Angio's back then? I was 33 at the time and now look at it as a blessing as I slowed building what my wife called an "Empire" and learned to enjoy life as well as building my Business. Now 23 going on 24 years later I still run one business and sold off the remaining two, enjoying my children, grandchildren and friends. Knowing that the risk of a stroke looms but everybody will die sooner or later I at least had the chance to slow down and see life for what it was.
Now Albany Medical which is not far from me has all the equipment and a knowledgable staff led by Dr. Bulis
I went to Mass. General in May 1988 for my proton beam. Yes, it was hell!!!I was as sick as a dog after it. For a while I thought I had radiation poisoning. It didnāt work either. It took doctors from 1984 to 1987 to figure out thyat I had an AVM. MIne is a cryptic cavernoma, whi means itās venous in nature. ITās in the right head of the Caudate Nucleus, which is right by my communication & movement centers (Brocaās & weirnickās centers) I was 29 when I had the first symptoms of it. I just turned 56. It bleeds every now & then. Luckily, because itās a vein, it only drips. I still have residue from the bleeds in my ventricles, which still causes residual problems with my left side. I tried to finish college with a degree in Social Work, after going to nursing school, where I was discriminated against because I had tremors & dystonia. For almost 20 years I had one of the foremost experts on AVM treating me: Dr. Daniel Hier. He has written about 20 articles (research) published in all the professional journals from the '60ās to the present. Too bad that he retired. Findding a new doctor at the UIC med center has been hard.
Anthony Puglisi said:
Michael, like yourself I was told in Sept. of 1988 that my blacking out and totaling my car was due to an AVM in the vien of Galen in my brain. My local hospital and the Neuro's on staff were smart enough to tell me, "There are bigger fish in the sea then us" Hence a trip to Mount Siani in New York city. There a Dr. Malis told me he could cut it out. Not quite got a second opinion in Boston at Mass. General. The anwser is Proton Beam therapy and away we went to Havard Cycleatron center. Screws, ratchets into my cheek bones and the back of my head to hold the Halo on that would project the Beam in the right spot. The noise of the ratch turning the screws into my head and face was almost enough to make me sick even though I was numbed for this. Nothing it was supposed to shrink. 15 Angios later and three syrgery's placing Platinum coils to divert, slow and stop the flow of blood elimanating the "Brewery" in the Femoral artery that even my GP could hear. Do you remember the Burn in your eyes when they pumped the dye when they did Angio's back then? I was 33 at the time and now look at it as a blessing as I slowed building what my wife called an "Empire" and learned to enjoy life as well as building my Business. Now 23 going on 24 years later I still run one business and sold off the remaining two, enjoying my children, grandchildren and friends. Knowing that the risk of a stroke looms but everybody will die sooner or later I at least had the chance to slow down and see life for what it was.
Now Albany Medical which is not far from me has all the equipment and a knowledgable staff led by Dr. Bulis
My son was diagnosed with a facial AVM when he was just 7 months old. He is now 13. Symptoms appeared very early (a swollen cheek) and then a mass began to grow from his palate and upper gumline. Bleeding ALOT!!! Misdiagnosed at first as a hemangioma.
Turns outā¦ no broken bones but an AVM instead ā¦