Me & my AVM

Hi, im Lianne. Im 20 years old and was diagnoised with a AVM on the 5th of july 2009 My avm is on the larger size at 5cm.
It was early hours when i got a bad pain in the right side of my head then i got loud ringing in my ears, then finally a bad pain in my neck. I rang for a amberlance saying i thought id ‘pulled my neck’ a CT later showned i infact had had a hemerage and i had had a bleed. My life changed from there. I was then transfered to the queen elizabeth hospital Birmingham where i have been put under the care of Dr Gan.
2 weeks later i found out i was pregnant knowing this was very risky i still went on with the pregnancy, any surgery was then to be put on hold to after my baby was born. I had check ups every 2 weeks and my blood presure was constantly monitored. I was under the fetal care team at The womens hospital birmingham where the advised me to have a planned c-section as birth may be to risky. I had a detailed scan where they checked my baby over to ensure the ct did not cause any damage where i found out i was having a perfectly healthy baby boy.
On the 4.4.10 i went into labour 11 days before my planned c-section date i was then gave a emergency c-section & epidural where my baby boy logan was born at 37+1 weeks perfectly heatlhy weighing 6.60z. 3 days later i took my beautiful son home.

I recived a appointment shortley after for the 25th of may where we discused treatment, embolization was the first step we was going to take. I recived my treatment date which was for the 10th of november a few weeks later.

I was fine lived a normal life, id get headache from time to time but nothing paracetomol wouldnt help. On the 26th of october on my way home on the train with my son, sister and neice i had a pain n my head back then the neck pain i knew what was happening i stayed quiet not wanting to alert my sister as i didnt want a fuss or to get the attention of any other passengers. A ct then showed i had had another bleed i was then transfered to the Q.E where i waited to have my embolization.

After surgery i was told that it was hard to glue but my radioligist thinks hes glued where i have been bleeding from. Since treatment iv had headaches almost constantly and loss some feeling to my left arm also my sight has gone abit if what strange. I have been told this should lift in weeks. I am now waiting for a appointment with the radioligist which should be within the next 2 weeks. They are going to re -attempt the embolization in 2 months wish me luck!

I have missed many stuff out and made loads of spelling mistakes no doubt sorry!
If theres anything i may be abl to help you with or aything u feel you may be able to help me with your more then welcome to approche me take care and good luck with life!!

Hi Lianne…
I live in Birmingham…My daughters have just been diagnosed with avm’s and is also under Mr Gan QE…she had an angio three weeks ago and has appt with Dr Gan on 30th now…where is your Avm and what is the plan…This has knocked us for six…it would be good to talk…Ash is wanting to go to the headstart support meeting at the qe on the 1st friday of every month are you aware of this group?


hi my daughter is 16 we found out she as a large avm… she is bein treated at the queens under dr mc arther .at present there sayin its to dangerous to treat as its a unusual one she as its cerebral proliferative angiopathy so there now refering us to a doctor glasgow hospital so just awaitin to see him…do u no if there is a support group or meeting i could go to near by were from leicester…take care…lisa x

Thank you for sharing your story with us. It’s wonderful to know a new life got delivered into the world by you, what an achievement! You will be in our prayers, may God bless you. Just key praying that you will get better.

Hi Lianne
I am also under Dr Gan at QE, i went for my 1st embo in sept and thank god everything went fine, i was told that i would expect my 2nd embo this month and nothing has come through yet. The docs did warn me about my avm too saying it could be dangerous to treat but i still went through with it and glad i did, its just the waiting round for the next appointment. Its so good to hear from someone at a simlar age to me an being treated by the same doc! good luck with everything :slight_smile:

Thank you everyone for your wishes. Sorry its took so long for a response i havent had internet access. I am now awaiting my 2nd embolisation the upcoming wensday! very nervous i think im more scared then the first time around as i know what to expect it is also my little boys 1st birthday the 4th bad timing ahy lets hope they dont cancel! My avm seems to be keeping its self to its self since my bleed in november fingers crossed wendsdays succesful.

Many thanks, If any one has any questions that i may be able to answers dont hesitate to ask.