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AVM Survivors Network

Mother seeking help!


#1

Hi looking for advice we are new here. Our son. Now 17 was diagnosed with an AVM just under 3 cm that lies directly in his motor cortex. He suffers from sensory seizures to his right side and currently has weakness on the right side of his face not too bad only noticeable when he smiles. His neurologist also sees some weakness in his right hand he currently takes seizure meds to control his seizures his dosage had to be up 4 times since his diagnosis in 2012. He also has a very tiny aneurysm in his canvernous sinus area thou it’s not a concern it is said to be another piece of evidence that his vessels are under a lot of stress, and that there is a lot of blood flow. Our neurosurgeon knows it’s time to do something he always talks of surgery however he is struggling with it because it will cause our son to be paralyzed in his hand and arm up to his elbow. He did say after 6 mo of therapy he can gain most motor function back. We got a second opinion this week and this Dr was all for radiation (gamma knife) our current Dr feels with either one our son will not walk away from this unaffected in some way. Our neurosurgeon is trying to hold things off until he graduates from high school next May. I am beyond scared and have done so much research I feel the internet has become my enemy! Any and all advice would be greatly appreciated
:heart:
Wanda


#2

Wanda,

Welcome! It’s not appropriate for us to give medical advice, so you’ll need to rely on the advice of your doctors as to how urgently [Joe?] needs anything doing. There are risks with either approach, as well. The risks vary according to very much the specifics of your son’s case.

However, I hope some folk with an AVM in a similar location can share their experience with gamma or surgery that will help you understand how they got on.

It is absolutely right that the Internet is a scary place … for everything positive out there it is possible to find something scary. I went through exactly the same feeling when I first joined this site. However, there is good encouragement to be had from time to time.

From my own experience so far, and what I’ve read of others here, I would agree that to expect to come through with a perfect bill of health is unrealistic. Happens sometimes but not to be relied upon. However, people go on to do great things in their post-op world and if it is really necessary to do an op, then we’ve got to grasp the nettle. There are some really great stories of success here.

It would be really great if he can get through graduation first, but again heed the neuro as to whether that is the right thing to do.

So… welcome to the site. You’re part of a big family of folk all across the globe. I hope we can help you, support you both as you face this thing.

Very best wishes,

Richard

By the way, fab pictures!


#3

I’m sorry, advice was not exactly the correct word as I know this can not be given. Was looking at what others may have chosen over the other and how they did. Thank you for the welcome.


#4

Wanda - Not sure where you live, but I urge you to contact one of the top neurosurgery hospitals in a major city (NY, LA, SF, Houston) and have a specialist in AVMs read through your MRI results and advise you of all options. I have an AVM on left side of brain, also with right side face and arm occasional paralysis. I don’t take any drugs, as my episodes are maybe once a week for a few minutes. I had a cerebral embolism in 1995… your son will be fine. Get the best doctors you can, good luck !


#5

Wanda please contact Stanford or UCSF-
I am so sorry -
Dr Michael Marks is my doctor at Stanford- he is head of neuro radiology his nurse is Mary and she is incredible.
Dr Lawton is also wonderful at UCSF.
Dr Marks used embolism for me the 1st time with medical glue and onyx. The second time he said if the parts he left open were the issue then I would see another doctor at stanford to remove it cause it would cause paralysis. I was super lucky and my body sealed them on its own which is rare.
I am sure some others will chime in on gamma
Stay strong I know its hard - I think its harder to be the care giver than the patient. Esp being a mom.
Hugs
Angela


#6

Hi and welcome to the AVM site… This is a tough one I can say that easily cause there are so many factors that need to be considered.

The only thing I can say that may help is the fact your son is so young his recovery is much better and likely to walk away from this as a survivor like most here just fine… on that note there are many success stories out there and when you think you may have it bad someone out there has it much worse and has taken the bull by its horns and come out everything just fine.

If it is not urgent then he may wish to hold out until he graduates, however not everyone has this option, such as myself I found out I had an AVM and a month later suffered a bleed and had no choice but to have surgery… its never an easy decision but he needs to weigh up all the pros/cons and decide what he feels is best for him and the family… God bless!


#7

my little brother is 17 and just had a avm removed his right side is completely numb. To people typically regain control of that side? enough to play guitar?


#8

Every case is different so it’s not a straight answer unfortunately, however most stories I’ve seen are successful… God bless!


#9

thank you so much its been a week so far and he still hasn’t moved that side but he said mom!!


#10

I know its hard but keep the faith & be patient & positive… God bless!


#11

this is very encouraging