My Anniversary

[DickD]

Hey,

I just realised that it is exactly a year on Saturday that I joined the AVM Survivors community. It has been a very interesting journey over that year and I want to say it has been great to share some time with people in this community. Thank you for having me. Thank you for supporting me in the more difficult times. I still have the greatest respect for everyone who has gone through a bleed. I’ve only walked so far along this journey, compared with some.

I have tried to give back to the community just as much as I have received. Sometimes I’m sure I overdo it but please forgive me!

My journey:

The Process of Diagnosis Takes a Long Time

Hi, I’m Richard and I’m just getting told I’ve got an AVM. I’ve had headaches for years and last September asked my doc if I had wax in my ears cos my hearing seemed a bit dull, and when I laid down at night could kind of hear my heartbeat. No wax, so we parked any other concerns. Over the winter, the “heartbeat” got louder and I started checking out articles on the Internet. Some were very unhelpful-- mostly people being told by their docs that there was nothing to do. Then I discovered pu…

and

My Update - Dural AVF Embolization

Hi all, I just wanted to give an update on my story. Part 1 here. I'm still waiting for my embolisation. Back in late November / early December I was told I should expect embolisation in "March / April". Each week that goes by, I'm feeling very gradually more poorly. I'm not sure I'm as poorly as a lot of people here but I'm feeling a bit more grey about it as time goes by. I do have good weeks but the last two have been more difficult. I've got a Dural AVM or AVF in my right occipit…

I have to say that reflecting on how I am this week, I am much better than I have been since the beginning of the year. I still have days when my head feels odd but perhaps as many or more when it feels just fine. I’m definitely better than I was after my embolisation in April, than after my angiogram in May, or for that matter than I felt last month.

I hope others get encouragement from my story and it is great to be part of this community!

Lots of love all,

Richard

[Bill4]

Hi Richard, you and I are both fortunate that our AVM’s didn’t bleed. My story is long so read it in my profile if you’re bored.

The short version: I was in a head-on collision resulting in much head and brain trauma. After numerous tests and an MRI the doctors said all is good.

I wanted a second opinion for no other reason than being through. These doctors found the AVM. First ones missed it. It was asymptomatic. So I would not have known I had one until it hemorrhaged. Lucky me!

I had surgery June of 1993 and made a full recovery. Not sure I would do that again.

I wish this forum was available when I was euduring the AVM journey. I’m just happy now to be able to help others anticipating their futures after AVM treatment.

Stay strong. And reach out if you need to.

Bill

[DickD]

Bill, thanks. I ed your original post yesterday. You encouraged me so much with that original post, it deserved a
, even a year later! Thanks!

Richard

[DickD]

I just wanted to record a little success… I signed myself up for a local gym a couple of weeks ago. First time in 13 years, I’d say, that I’ve been a member at a gym. I’ve only been attending a week and a half but I’ve finished this evening’s sensible 50s+ fat burn to cardio range CV workout and feel fantastic.

Head is still a bit funny some days and I’m starting to think I might need to go and see the doc but doing a bit of good, sensible activity feels good just now. Thought I’d share some good feeling…

Lots of love to all,

Richard