my mother had an AVM that ruptured that she didnt know was even there. i found my avm by accident when i fell down the stairs. doctors told me that my head pain was due to anxiety.
An update- Alexis will have gamma in 2 weeks, her 8 yr old sister will have an MRI in 2 days and Alexis’ HHT testing is due back in 2-3 weeks. The geneticist told me that she may have HHT but it is very possible that only the AVM’s are hereditary. She has seen many cases of both. Alexis’ neurosurgeon has also dealt with many AVM cases. I am so blessed to be in SoCal with these wonderful and experienced doctors. My prayers go out to everyone.
Sadly, I have to report that 8 yr old Zoe also has an AVM. Thankfully it is superficial, characterized as a Spetzler grade 1 arteriovenous malformation. We have not had an angiogram to see if there are more. I’m praying there is only the one. The doctors are waiting for the genetic testing before we proceed with any treatment. It is hard to keep focused, there are three more children who need testing and 2 that will need surgery and/or gamma. Please pray for us.
Oh Christine. I don’t even know what to say. Of course I will pray for you and I wish you strength.
Christine, I’m so sorry you did not get great news on Zoe. I had to comment because I also have a daughter named Zoe. She is 9. Through your blog however I am learning that there is a gene to test for, the HHT? I have to see what I can do to get my girls tested. Good luck to Zoe…such a beautiful name!
Christine Bolender said:
Sadly, I have to report that 8 yr old Zoe also has an AVM. Thankfully it is superficial, characterized as a Spetzler grade 1 arteriovenous malformation. We have not had an angiogram to see if there are more. I’m praying there is only the one. The doctors are waiting for the genetic testing before we proceed with any treatment. It is hard to keep focused, there are three more children who need testing and 2 that will need surgery and/or gamma. Please pray for us.
I haven’t had any genetic testing done, but when Lizzie was first diagnosed with the AVM we had her older sister get an MRI to rule out an AVM for her. But she has had migraines for years, so we had a medically sound reason for the test…thus, insurance was willing to pay for it. Thankfully she does not have an AVM causing her headaches. (Of course, the fact that she has had migraines since she was a teenager made the doctor think that Lizzie’s headaches were “just” migraines too…Headache + nausea = migraines, right?)
wow. I am so scared. My Fiancee was diagnosed with an AVM in JUNE 09 , we are still coping with his health and learning to accept his condition… but now I feel really worried about my daughter. She is 18 months and shows no signs of an AVM but was born at 24 weeks…now I am wondering if her prematurity had any connection to AVM.
Hi, my name is Jenny and I live in Alaska and am 37. Both me and my sister were diagnosed with different vascular syndromes in 1981. She has Klippel-Trenaunay and I have Wyburn-Mason Syndrome. The doctors then and since never thought that this could occur in the same family. We he no other siblings. She really hasn’t had any problems with her syndrome except for an unnecessary vein stripping surgery when she was 16. It’s in her right leg with portwine stains. I’ve had 2 superficial AVM’s and my left eye hemorrhaged resulting in blindness and then removal 5 years later due to pan and shrinkage. One AVM was in my left jaw and was surgically removed in 1987 at age 15. The second was below my left nasal fold, found in 1998, and was radiated with 5 treatments in one week. It shrunk within 6 months. In April of 2006, I had a stroke at age 33. They did an arteriogram and discovered an aneurysm in the left side of my neck. They never could say if my stroke was caused by the Wyburn-Mason or just a fluke bleed in a normal vessel. I have recovered and was walking again in five weeks. There are no lingering effects or symptoms. The doctors told me that aneurysms are pretty normal with my syndrome. BTW, they coiled my aneurysm. As far as I know I am AVM free now and feel very blessed that my brain has never been affected by my syndrome. I found a medical article that was really interesting mainly for us with a named/diagnosed syndrome. It’s filled with alot of medical jargon, but I could understand most. It addresses the genetics as well. I’m not very computer savvy but I think I’ve attached it for those who are interested.
My heart goes out to those of you who are currently suffering. I hope my journey is over with AVM’s but with my syndrome no one knows what could happen. I have had embolization, surgery, radiosurgery and so many arteriograms I can’t count. If anybody wants an opinion on any of the above procedures I would be happy to explain them as best I can.
I just found this group and hope my experience can help someone.
518-CraniofacialArteriovenousMetamericSyndromeI.pdf (138 KB)
I have a cerebral AVM and my mother died from a cerebral AVM. I found out last year that I do have HHT. I pray that my children and grand children don’t have an AVM. My entire family do not want to be tested. This upsets me that none of them will be tested in any way. My mother suffered for so long with her AVM, she died in 2004 and I found out about mine in 2007. I think they just can’t deal with it yet. I am so happy to hear your son does not have one.
Hi. I am SO sorry to hear about your daughter, you will all be in my prayers. I found out a couple of days ago that my great grandfather died of a cerebral hemorrhage, my grandmother has had an aneurysm and of course my AVM which bled twice at the same time. My son has been having headaches for a while, so yes he will be checked. All the Doctors said it was not but I don’t beleive that anymore, I’m glad I found this. Thank you so much. We all have to keep our faith though. Like I said you willbe in my prayers.
I found out after i was diagnosed with my AVM my uncle who had passed away with a fatal brain anaurysm also had an AVM that was undetectd until as autopsy was done determine cause of death. His avm had ruptured at the age of 35. Which how I am now when my was diagnosed last year in dec 2010. And I know they are not hereditary.