Daughter had "Arterial Venios Malformation"

Trish · #1 10-05-2008, 07:43 PM

On May25th 1999 Our daughter Brenda at the age of 18, having been sick during the night and was like in a drugged state when I called her in the morning so I called the doctor when he saw her he thought it was meningitis and she was rushed to hospital. They carried out some tests and told me to call all the family to the hospital as her scan had shown that there was a birthmark on the front of her brain. It had given way and leaked into her brain. They had to get her a bed at the nearest hospital for brain surgery. A bed was found at another Hospital where head injury patients were usually taken. More tests -then we were taken into the office with the surgeon and told that the bleed had stopped but they would monitor it over night and operate next day. He said they chances of brain damage were to be considered both from the bleed and the dye from the tests. She was diagnosed with Arterial Venios Malformation.

At 1.40pm the next day, we took our daughter to the operating theatre. Eventually at 11.40 we got to see her in the recovery room as the surgeon was waiting to see how she had come through the operation. Her Aunt was allowed to see Brenda to see if she would recognise her. She did and we stayed just a few moments with her. The next 24hrs was critical. She survived that. We were only allowed a few minutes at a time in with her. Brenda had no idea what had happened her and I had to keep telling her what had happened to her as she was very forgetful. She kept getting out of the bed to go to the toilet not remembering that she had a drip so it had to be put in several times. Brenda needed to be reminded about everything for the next few weeks. She was allowed out of hospital and I moved into her room and kept watch 24/7. We had a few setbacks but we got through it. The next few months were hard. It took its toll on all the family. She had a bad time accepting what had happened to her and why.
Since then our Brenda has had bouts of vomiting that come and go without any warning except the side of her face seem to drop slightly and she get very flushed. Loads of test have been carried out but no cause can be found. It can last from two days to a week, it can be monthly or a few months betweet. She now self injects with an anti sick medication(as this cuts down the time waiting at the hospital to be seen) but all that does is to give her a few hours sleep. Our own doctor says it is damage from the AVM. It could be from the bleed or from the dye.
She is totally incapacitated during these bouts and it is heart braking to watch and know that nothing can be done to help her. She has a little girl of 18 months. She is unable to get a job as no employer would take her on not knowing how often she would be off sick.

Victoria's · #2 12-24-2008, 12:43 AM

I was 21 when I had a seizure & hauled to the hospital. MRI showed cavernous angioma & possibly a AVM. They also saw I had bled about 2 wks prior. Put on dilantin. 1-2 yrs. later (92') the angioma bled. Surgery. Seizures continued, migraines constant & the MRI finally showed the AVM. Because of the angioma, where the AVM was @ along w/ the aneurysm, they wanted to wait & see. In 94' I had everything in the "group" removed from my brain.
In the past few years the seizures got worse all of a sudden. Scar tissue from the surgery & the metal clip for the anuerysm are now causing problems.

Migraines can cause vomiting (not me fortunatly), & other things w/ no headahce @ all. Has her Dr's thought of that (some don't) & has she had a CT scan? It will show if she has scar tissue which can also cause the problem. If this problem began out of the blue you may want a second opinion. If you decide on that get all copies of CT scans & tests.

Had ALL of the AVM been removed? Get ALL of the records. MRI's & CT scans are a" must have". They get destroyed after 10 yrs. & since I had no records of the type of clip is in my head I can't have MRI's . So I will never know if something new (aneurysm) has arrived.

Trish · #3 12-28-2008, 02:29 PM

Hi Victoria,
Thank you for taking the time to post a comment to me. We have had all the tests done except having another dye test done and we have a copy of the CT scan. While her own doctor recognises that she has problems the social don't and stopped her incapacity payments. No employer will take her on so it is not a good situtation.
Only we know what she and us has to deal with. I know things could be worse. But even if they gave her accomodation it would help. I don't know what to do next to help her.
Can I ask, were you born with yours?
Trish