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AVM Survivors Network

Daughters inoperable avm

Hi!
I’m new to this site. About a year ago, my 27 year old daughter had her AVM discovered, as she had had a small bleed. Her avm is in her spinal column, from C1-C4. All have said it is inoperable, and she should live with it. She had some mild neurologic deficit on her left side after the bleed, and some nerve damage to her lumbar spine where the blood drained. She has recovered and done well, but had a second bleed this week, with horrible nerve pain I. Her neck and back. I’m so scared for her. Any advice on how to manage the uncertainty, the worry and the fear??? Any advise would be much appreciated!

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Hi welcome to the family & sorry to hear about your daughter… has she consulted a specialist about this issue & if so & there are still concerns maybe a second opinion may be beneficial… God bless!

Thank you! Yes we are discussing with specialists. But I so appreciate the welcome!

Beth

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I am sorry to hear that your daughter is having trouble. Please keep us in the loop when you can. You have a home here.
Sending prayers your way.

Hi. I’m so sorry about your daughter. AVMs are awful things and I know its not what you want to hear right now. But I also have a large inoperable AVM (mine is in my brain). It has never bled and for that I am eternally grateful as it would probably be catastrophic. But I try my hardest to accept the situation and be grateful for what I have. Burying my head in the sand? Well maybe. But to be honest I’d probably drive myself mad if I didn’t. I love my life as is but unfortunately some things are beyond our control. You just have to trust the docs and God. Best of luck.

Thank you Lulu! I so appreciate your response. It is so helpful to hear others’ stories and experiences. Bless you!

Beth

Thank you so much! It is so rare and frightening. Encouraging to hear others who are managing! Also thank you for the prayers!

No worries at all. Sometimes its just helpful to know you aren’t the only one. I remember when I was diagnosed in the late 80s thinking I was alone with this. Best wishes to you and your family. x

My daughter is married to a minister. Always find prayers here.

He is awesome, by the way.

I love it! Thank you so much!!:heart::heart::heart::pray::pray:

Hi Beth, I also had an AVM in my T 12 spine area, mine ruptured. It was and is awful. My surgery was at UIC in Chicago. I have a great Dr. if you would like his information, please let me know.

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Thank you Richie!

I appreciate the info. Hope you are well.

Beth

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@Bcarter Hello and welcome to the site- I am so sorry to hear about your daughter - The number one dr in the USA is Dr Michael Lawton who is now in Arizona at Barrow - He used to be by me at UCSF and does great work. Many people have been told that their avms were not able to have surgery and he has been able to help them. He does remote consults-
We are here for you. I have been both a patient and care giver for my younger sister when she almost died from the flesh eating virus - personally speaking I think its tougher to be the care giver
hugs
Angela

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Hi Angela!

Wow! You have really been through a lot! Oh my gosh. Thank you for the info. I have heard of Dr Lawton , and I do believe I will reach out to him. I had also heard to reach out to Stanford and their cyberknife clinic. It is good to hear some other perspectives. Thanks for reaching out to me!

Beth

I’m sorry to hear about your daughter, I also have a large inoperable AVM although mine is in my brain, one can live with an AVM mine was discovered 30 years ago, and your daughter has had her’s, her whole life. Unfortunately alot of unknowns come with an AVM, I wish I could ease them for you, what I can do is be here for you or your daughter any time you need someone to talk to, you are both in my thoughts

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I’m so sorry to hear about your daughter! I was told many mistruths by the first neurosurgeon that I went to and mine was in my brain stem…the area where mist surgeons won’t venture. You need to find a doctor that specializes in these. Mine was Dr. Jonathan White at Southwestern in Dallas. I wish you well. It’s a difficult journey, but once you find the correct specialists it makes it much easier.

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Btw…mine is in the right peduncle and midbrain and although I had surgery on it in 2006, not all of it was retrieved unfortunately, which is common. Mine also likes to bleed several times a year, but I believe that stops it from getting as large as it was.

Hi Jules!

Yes, she has had it her whole life , which is crazy. But at age 27 it has started to act up. She has had at least 3 bleeds now, maybe a couple more that went undiagnosed. And they are getting more serious and painful every time they bleed. So scary. Thank you for reaching out to us!!

Beth

Hi there
Really sorry to hear about your daughters recent diagnosis. Our son also has an inoperable and extensive avm in his back which also affects the spinal cord. Last year we had a while exome sequencing done of a biopsy from the area. It showed a mutation in mitogen activated protein kinase kinase 1 (MAP2K1), the gene that encodes MAP-extracellular signal-regulated kinase 1 (MEK1). He is now on a MEK inhibitor drug called mekinist and initial results are looking positive (based on blood flow assessment of avm shunts). I’m not saying this could be the case for your daughter but worthwhile seeing if you can get exome sequencing done of the affected area (if possible to biopsy)

Paul,

Wow that is so interesting. Her AVM is not in a place that could be biopsied, but the gene studies could be interesting and helpful. Thank you so much for sharing that information with me! I appreciate it.

Beth