After suffering the worst ever headache on 20th may 2015, doctors said migraine. 3 times I went back to the docs, even went to A&E. Last Thursday I managed to have an MRI scan which showed the avm on the right occipital and it had had a bleed. I’ve been in hospital since. Angiogram is happening tomorrow. Scared.
Nichola,
You have a lot of information to deal with, being right at the start of your treatment. I'm glad they finally figured out what was going on after a misdiagnosis, but am sorry you're having to deal with something as stressful as an AVM.
Once your angiogram is done, your doctor will have more details about the AVM and will be able to discuss possible treatment plans with you.
It's definitely scary, having to deal with something like this - I'm very happy you found us, we can offer support and information when you need either.
Stay strong and positive - your team will take good care of you through the medical things, and we can help here with the non medical things.
Hi Nichola
Sorry to here that where the avm is should be fairly easily treated try not to worry too much i know its a shock remain strong and positive i am sure your doctors will sort it out wishing you all the best.
Hope you’re feeling a bit better today?
My avm was diagnosed last summer and I am waiting for a date for embolisation and craniotomy. Keep positive, ask lots of questions and take time to make the decision on what treatment is best for you.
Are you in the UK?
Best wishes and get well soon.
Yes I am from the UK.
Thanks for all the replies. I’m awaiting the results of my angiogram now.
Wishing you all the best, i know how hard it can be when the NHS just dont understand AVMs, i was rushed to A&E just days ago and know full well their lack of experience in dealing quickly with them.
My thoughts are with you and your family, and hope the Angio can shed some light on yours in order for it to be treated quickly if possible, they can deal with them quick if they want/need to, mines became emergency and was rushed into to surgery.
Thinking of you.
i'm glad to hear that they caught this in time. Try not to worry about this too much. Get as much information as you can to make an informed decision and remember you have a great deal of support around you. Best of luck.
My story was a little easier. The ER doctor did a head CT and discovered that I had a bleed in the first few hours after my headache started. That was January. I have had three angiograms, two more CT scans, and two MRIs since then. The doctors have finally figured out what caused my bleed and I'm now trying to decide on surgery or radiation.
You need to know that the process of getting a diagnosis and cure may not happen quickly. I know it has taken waaaaaaaayyyyy to long for me. Be patient and, as others have said, stay positive. In the first few months, when I had a lot of uncertainty, it spent a lot of time looking up and connecting to old friends. It was really therapeutic for me to talk to people that I had lost touch with.
Anyways, stay positive and try your best to go on with your life as this unfolds and know that the process of getting to a cure will probably be measured in months.
Thanks everyone. The Doctor has just been to see me. They said they found what caused the bleed and it was an aneurysm within the avm. There’s 16% chance it could happen again in the next 12 months. 3 options of treatment are, craniotomy or Endovascular embolization, or radiation. I did say I would like to get back to normal ASAP. They said they recommend trying Endovascular Embolization first and seeing how successful it’s been then possibly craniotomy if it’s not been eradicated. They said they want to do the Endovascular Embolization this Friday. So fingers crossed it could remove it there & then.
It's good to hear that they found the problem.I had an aneurysm in my AVM as well and after an embolism and surgery I'm happy to say there is no sign of the AVM. I do have some side effects but they are nothing compared to what might have been. Keep positive and we'll hope for the best possible results.
Bert - did they find the aneurysm from an MRI or angiogram or was it during treatment?
Hope you don’t mind me asking…
Nichola, embolization alone doesn't generally eradicate an AVM. Embolizations are generally done to make craniotomies safer. They are done to seal off the main feeders to the AVM in an effort to ensure they don't bleed during surgery. Just be sure to ask your doctor about this. It's a lot to process all at once but this is a good place to get information.
They found it from the angiogram. IT scared at first but with the support of my family I got through it
Nichola - I'm glad that the rupture was found. I wish you a lot of luck with the Embo. I hope everything works out.
Thanks everyone. It’s been a crazy week. This time last week life was normal. What a whirl wind!
Hi Hun!
Hope all is well and you handled the angiogram well! I too have an AVM in my right occipital lobe that severely affects my vision. I'm currently in treatment and it hasn't been pretty. I will tell you, be patient, be positive, and be prepared to accept some new norms for a while.
Good luck and if ever you need someone to talk to or have any questions, shoot me a message! :-)
Good luck!
~Mica
Hi Nichola.
I too have an AVM in my right occipital lobe. Was diagnosed back in nov. 2014. I have had embo and GK (radiation)as treatment. It has not been a easy travel, have lost some of my vision - left site both eyes. If it can help in any way, feel free to read on my profile, and ask any qustions :-)
All the best to you :-)
So I’ve had the embo but only to safely block the aneurysm within the avm. They were unable to attempt to block the avm as the neurosurgeon was no available on standby. Gutted that I will have to have more surgery. I move house in 2 weeks and have no choice of moving as land lady has sold house. I also start a degree in September. I really want my life back. Feeling sad.
Nichola, hang in there! I know it’s so hard. I had two things scheduled to start 2 days after my avm bleed back in August and then embolization and craniotomy this past January, I still have things on hold. It’s rough and now all I can do is live and savor each day cause I’m so blessed to be alive 
Dear Nichola - God Bless You. I am sure you will live 100 years … Thank God you didnt have a blackout and are in safe hands in the hospital. There is a way out of this and I am sure you will come out successfully.