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AVM Survivors Network

The Process of Diagnosis Takes a Long Time


#41

Just had a phone call yesterday, I have been given an appointment for an initial consultation with Dr Shovlin at Hammersmith Hospital on Thu 13 Apr. I can’t wait. The questions from the link you sent have certainly helped with what I should be asking. I’m on my way to hopefully getting sorted out. Take care Mandy


#42

Mandy,

Don’t worry about it too much. The doctors don’t really expect you to know anything about your condition, so even if you don’t ask everything you might they will aim to tell you what you’ve got, what they think could be done about it and what they propose as a first step. That you’ve read some information on this site and have understood some of the procedures that others have gone through, etc should help you to have a better understanding of what they might tell you about than someone who found out only yesterday.

Keep us posted and good luck. Be positive and don’t worry about it. Having a date to aim for is a really good thing.

Best wishes,

Richard


#43

I only found my AVM through pulsitis tinnitus and had a MRI and found AVM, no bleed , had surgery to get rid of it back in May 2017, was the best thing I ever did. Don’t get me wrong I was scared to death the thought of having surgery. But now AVM free. And got my life back. Didn’t get to the stage of a bleed. I was very lucky.


#44

Maxine!

So your surgery was a complete success! You’ve had the angio to check everything last month?

Richard


#45

Yes had CT scan back in August but still waiting for results to see if all AVM gone.


#46

Hmm. So in line with the title of this article, that you’re having to wait some time for scan results to come through. Disappointing. Good luck with the results! Do you feel better after your op?


#47

Yes feel fine, was abit tired for a few weeks and took me ages to get my sleeping pattern back, was in hosp for 12 days as had a pre op embolisation first before surgery. Glad it’s all done but I’ve had my driving lic revoked and so can’t drive , for around 6 mths. As you have to prove your seizure free for 6 mths. I’ve got to re apply for my licence its a frustrating thing is I never had a seizure before surgery or after, so it’s very annoying , wish I’d never contacted dvla now ref to this , as it’s causing nothing but problems :persevere:


#48

But if you had an accident and injured someone else, you’d feel worse. I stopped driving in November and then was told I must not drive in April. However DVLA agreed with my doctor that I was OK to drive again and I’ve been driving since late June, I think. I understand that you can start the process of re-application a month before the expiry of your 6 month ban, so don’t wait the full six months!


#49

No I won’t wait that long as have application here to complete. I’ll get it done asap


#50

A post was merged into an existing topic: This web site always give us negative posts


#51

Between the ocassional seizure and the loss of left periphreal vision from my rupture I will probably never drive again.
I think the loss of independence has been the hardest thing to overcome for me.
I have not had my license revoked yet as I have not reported it to the DMV but I don’t drive as I could not live with myself if I hurt someone while trying to drive.