AVM Survivors Network

Frightened for my Daughter

I am so worried. My daughter has suffered with headaches for the last several years. Even though my AVM is not supposed to be hereditary (congenital, not HHT), I told her to see a neurologist about the headaches and to ask for an MRI. Four years ago she went to see a neurologist and he told her that her MRI was normal and that she was probably developing migraines.

Her headaches have become worse and more frequent, so I told Christina to talk to my neurologist, which she did last month. Dr. Sahni asked her to get a copy of her old MRI and her records from her previous neuro.

Within a day or two of making the request from his office,that neuro called Christina to say, "Oh, by the way, there were a few white spots on your MRI". He said that he had spoken to two radiologists about it then. One said they were consistent with migraines and the other one said it wasn't normal. That neuro decided to go with that first opinion, but never said anything about it to my daughter. Now, four years later, I believe he is trying to cover his ass because her new neuro was going to see this on her records!

Christina went to see Dr. Sahni today. She says that two of the lesions are very suspicious and is requesting a new MRI. I am so scared for my daughter. Please pray for her.

I will pray for her, Connie. I hope all will be well!

Thank you, Madere!

Connie I've got you both in my thoughts. Positive, warm thoughts heading your way.

Connie, Dear Friend, I will say prayers for your daughter. Please keep us informed as she will be in our thoughts.

The same thing happened to me...I went to a local neurologist who looked at my MRI, knew I had an AVM and but told me to just ignore it and leave it alone. I believe he had no idea what an AVM was.

I then made an appointment with the best neurosurgeon I could found who looked at my MRI and saw me the very next day. He saved my life.

You did exactly what I would do if it was my daughter! I'm so glad you sent her to a great doctor! Again, please keep us informed!


So sorry to hear you are faced with another battle. I hope that this one will be resolved quickly. Glad to know that your daughter is getting the help that she needs. Take care!


Good for you Connie for insisting she get a new MRI. Smart thinking (wink). I think too the old Dr. is trying to cover his but. I've been through that too with a few drs. If it makes you feel any better, my MRIs always show a couple white spots and all of the drs I saw, all agree - they are nothing. Now, mine are small. Which could make a difference if they would have any effect or not.

It is possible that her migraines may not becoming from the brain too. I have a few female friends that their hormones were out of whack and a simple prescription got them back to normal and the headaches went away. Let's hope it's something simple like that for her (fingers crossed).


Connie, my positive thoughts and prayers are with your daughter my friend!

Hugs please keep us posted!

Thank you all for your good thoughts and prayers. I will let you know how things progress,

I will be saying a pray. I worry about my daughter every time she says her head hurts!

Just a small update...my daughter had the MRI last week, but her appointment with our neuro isn't until the end of the month. I feel like the doctor would have already called to see her sooner if the news was bad, so I'm feeling hopeful.

Hi Connie I just read about Christina. How is she doing now? I hope doctors have found an answer.

Erica, my daughter has seen several types of doctors, but no one has been able to figure out her diagnosis yet. Thank you for asking about her. :)