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AVM Survivors Network

Needed some advice... but now she has passed away


#1

Hello, My wife is 29, an AVM IV parieto occipital in her brain, sha has had 3 bleedings. 3 Gamma Knife sessions ( didn work for her ) Last bleeding March27 2018 did put her in a coma for 2 weeks. Now she is coming back. She did lost movement in her Leff side. She is in a lot of pain.
She is so sad, she feels dispair. A cirugy is waiting as her last chance to survive. I am so scare. I don know how to help her. We are from México City and we live here as well.
Dont know wy i am writing, i am so sad.


#2

Hi

I am sorry your wife is going through such a difficult time. However, there are many people here who have had a bleed and many who have had a surgery to deal with it.

I am lucky not to have had a bleed but I have read about it, and recovery from it, a lot. I have also watched a documentary film about a former soldier who had a significant stroke and his recovery to good health. So there is everything to hope for but it is likely to be quite scary to have to do surgery and a very long time to recover from the bleed. I believe it is the bleed (and the damage that it has done) that will dictate how long it takes for recovery, rather than the surgery. So think about the surgery as a positive thing.

I know she is in a severe condition already. Are you comfortable about the doctors you are dealing with? It is good to be confident in their ability.

You are always welcome to write when life is tough. It is what this forum is here for.

I am thinking about you both. Very best wishes,

Richard


#3

I completely understand how you’re feeling except I was your wife in this scenario. The best thing you can do is hold her hand, let her cry/ scream if she has to. Be her advocate. She will be in quite a bit of pain for a while and it will take time for her to be back to a “normal” but it’s doable. My AVM was originally a grade 5 and it turned out to be two grade 4 AVMs in the parietal region with 3 aneurysms. I ended up with hemi paresis on my left side of my body but I am reaching a new normal and relearning to walk 8 months later after 2 bleeds, embolization, burholes, hydrocephalus, shunt, and a craniotomy. Give her time to accept what happened. She will return and heal it just takes time. I hated hearing to have patience but at the end it was true. By the way Im 25 and live in South Texas. Oh and back after my craniotomy I was in a coma for two weeks too. I can tell you myself that she can hear and knows you’re there she may just not know what happened and is in her make believe land/ dream. Just have alot of patience with her. She will need your love, support, and strength. It helped me alot that my husband was there for during this whole mess.


#4

Thank you very much for shearing your expirence with me. Means a lot. :pray:t3:


#5

At this point, we have no option but to trust the doctors. Since we were trying Gamma Knife and we spend millions of pesos on that, and she finish her medícal insurence
At this moment, Alejandra is in an Institute here in México
Instituto Nacional de Neurología y Neurocirugía. It is a public hospital.
They are good, but i feel that they arent close to the patients. The Nurses are FANTASTIC!!
Anyway we have no
Thank you for answering :cherry_blossom:
UP


#6

You’re very welcome, anything to help even if it’s for venting and asking questions :+1:


#7

Hello, just want to share with you that my wife did pass away yesterday morning. She is and will be my hero, my muse, my best friend.
I am asking for your blessings for her.
Wishing all of you all the best.
Love,
Úrsula


#8

I am so sorry for your loss, Ursula. So very sorry.


#9

Thinking about both of you. Thank you for telling us.

Love, Richard


#10

I am so sorry for your loss. I hope this forum can offer you at least some support and solace through this horrible time.