The loss of my wife

Firstly thank you once again to those of you who have left kind comments for me.

I would like to relate the story of my wife's battle with an AVM and her untimely death at 48 years old.

I have many unanswered questions that i hope someone here may be able to help me with. I would also like to make people aware of the circumstances surrounding my wife's death so someone may learn from it.

My wifes AVM was "discoverd" when she had a massive bleed on 25th of December 2008.

She initially had it coiled and further treatment was planned. It was planned that she would have Gamma knife surgery in stages as the AVM was considered inoperable as it was.

Her most recent Gamma surgery was in January last year, it was considered that her treatment was going well and she had an 80% chance of it being treated successfully to enable surgery.

In April last year my wife's health seemed to deteriorate. At the time the Doctor was trying to wean her off Dexamethasone and my wife was'nt coping well.

My wife was on this steroid almost constantly as i recall.

My wife's health got worse and by the end of June last year she was constantly vomiting.

I had the Doctor out to her on a number of occasions he felt it was something like vertigo and prescribed drugs accordingly.

I was concerned that my wife was unable to keep any food down the Doctor assured me that as long as she was drinking it was ok.

I was told on a number of occasions by her Doctors that the fact that she was not able to keep food down was not a problem and that i was to encourage her to drink, this was most important.

My wifes health got worse, she was not able to recognise my daughters, was having hallucinations and just before her final admission to hospital became doubly incontinent.

On her admission to hospital at the end of last August she suffered a heart attack which left her in a coma from which she never recovered.

My wife was in a coma for two weeks and my daughters and i had to make the decision to withdraw life support.

My wife died in September last year.

In the final admission to hospital despite many tests no one could tell us what was wrong. An autopsy was performed which was inconclusive.

An inquest was opened and my wife's brain was removed for further investigation, i was given the option of burying my wife without her brain or waiting until it was returned in a number of weeks after further investigation. I decided to wait.

At the inquest the cause of death was recorded as being Wernicke's Encephalopathy.

This is a disease associated with poor diet, it is usually seen in alchoholics, It is a deficiency in vitamin B.

This is what causes me so much hurt, my wife had endured all those horrible treatments associated with her AVM and all seemed to be going well and yet she died of a simple vitamin deficiency it seems.

I have as you can imagine looked for answers, trying to make connections between her treatment and the dexamethasone, did they contribute to her death.

My biggest regret is believing that inspite of her not being able to keep food down and therefore getting no nutrients or vitamins she would be ok, after all she was drinking water was'nt she.

I thank you if you have taken the time to read this, i would welcome any insight you may have on our story.

Clive

That is a heartbreaking story, Clive. I am very sad that this happened to your family, as I know many others here will be.

Clive,
My heartfelt sympathy & condolences to you & your family for such a sad & devastating outcome.
Peace & best wishes to you & your family.

Clive,

Thank you for posting your wife's story. I cannot imagine the agony in your heart over your loss.

May you find peace in your continuing journey.

God Bless,
Ron, KS

Clive,

Thank you for sharing your story with us. May time heal your family.

Hey Clive...I send out hugs to you and I'm very sorry to hear about your loss. I hope you find the answers you are looking for. Everyone's story seems to be a little different on here. I'm shocked that they let her be sick like that for so long...It doesn't seem right, we all know that water can not keep a person going alone. Please don't give up, more new things are being learned every day and I have faith that you will find your answers soon enough. Hopefully someone on here will have a similar situation and can give you some insight on their experience with it. Again I am deeply sorry for your loss.

Hello Clive. Please know that you and your daughters are in my thoughts and prayers during this tragic time. While we may not have the answers you seek…you are no longer alone. There are over 4500 members on here.

I'm so sad for you and your family, Clive. It makes me so angry when doctors don't keep looking for another answer when his/her original treatment isn't working!

Im wondering if the steroids did this to her myself.I took them on and off for one year n it wasnt no fun.Steroids can do many things to you.Im so sorry for your loss.I took the same steroids as she did n i stayed sick all the time while i was on them.I couldnt eat hardly because when i did my sugar level stayed up all the time just a little piece of noodle made my sugar go up.so i just didnt eat because i just stayed sick.Again im sorry for your loss n my prayers r with you and your children.

Clive,

I'm sorry that I don't have any insight to offer. But you have been through a lot. While you're story is an absolute heartbreaker, please hang in there and know that each and everyone of these 4500+ members have been through their own journey and have questions as well. Feel free to research here, ask questions or just vent. It's unfathomable to lose a loved one but again, hang in there. Please let me know if you have any questions or can help you in any way, and if I hadn't said it before Welcome!

Clive, Thank you for sharing with us. I believe this is the first time Wernicke's Encephalopathy has been mentioned on the Network. Your beloved wife's disease may create research, so that it never happens again. My thoughts and prayers are with you and your daughter. Please know that we are here to support you!

Thank you Amber,
Denise never seemed to be off steroids and as you have experienced they are bad enough on their own on top of any other treatment for the AVM.

I just can't get my head round the fact that she died because of a vitamin deficiency.

At the time you trust your Doctor, with hindsight I wish I was more assertive. While Denise was getting worse she said to me "I need a blood test" would it have made a difference, i'll never know.

Anyway thank you for taking the time to comment and I hope that you are well.

Clive
United Kingdom

Hi Louise,
thank you for your support. With hindsight (which is a wonderful thing)I wish i had been more assertive when Denise was getting worse. At the time i trusted our Doctor who did'nt seemed concerned at Denise not eating. However he had little understanding of AVM'S and so would refer to Denise's specialist when he could'nt understand why Denise was getting worse.

I think the fact that Denise had an AVM prejudiced her treatment, that they did not consider other illnesses, the AVM was their focus.

I hope that you will not see Wernickes Encephalopathy on here again, it is a horrible way to die.

I just feel that had they done a blood test when Denise was getting worse they may have discovered her lack of vitamin b. Regretfully, Denise in a lucid moment said to me that she needed a blood test but i trusted the Doctors which i will regret forever.

I can't make a connection between Wernicke's Encephalopathy and AVM'S despite much research. I just feel the Doctors considered nothing else but the AVM and just kept increasing her Dexamethasone.

Thank you so much for your support, i really appreciate it as i do of the others that have been kind enough to offer support.

I hope you are well and once again thank you.

Clive
United Kingdom

Thank you for your kind words Zilly, i really appreciate the support i have received from people like you and others on this site.

Kind Regards
Clive
United Kingdom

Thank you Ron for your support i really appreciate it.

Kind Regards
Clive
United Kingdom

Thank you Dancermom for your support, I will always be looking for answers but I am so lucky to have found people like you and others on this group who are so supportive.

Kind Regards
Clive
United Kingdom

Hi Elizabeth,
thank you for your kind words of support. I will always be looking for answers but i am so lucky to find supportive people like you and others on this site.

Thank you once again

Clive
United Kingdom

Thank you Barbara for your support, i really appreciate it. I know i may never get the answers i'm looking for but it won't stop me looking though.

I hope you are well and thank you for taking the time to offer me support.

Kind Regards
Clive
United Kingdom

Thank you Connie,
it seems the fact that Denise had an AVM prejudiced her treatment. I mean that her AVM was the focus of her Doctors, who discounted or did not consider other illnesses.

At the time i trusted our Doctors, with hindsiight i should have been more assertive over her continuing illness and why she was getting no better.

I hope you and your family are well.

Kind Regards
Clive
United Kingdom

Thank you Patti for your kind words.

Clive
United Kingdom