Up and Coming Angiogram for AVM causing TN.

[Jo1972]

Hi,

I have suffered from Trigeminal Neuralgia ( TN ) since 2008. In 2011 I found out the cause of this was an Arteriovenous Malformation ( AVM ) on the brainstem.

The only treatment option available to me was Gamma Knife which I had in March 2012. I've had yearly MRI's which have shown no changes in the AVM.

On the 26th January I'm having my first angiogram since the Gamma Knife. I've had two already and it was tough going. I'm already dreading this one.

I find it very difficult to lay flat for longer than a couple of hours as it causes my TN pain to intensify and I sleep using 5 pillows. I don't know how I'm going to manage this test as my TN has considerably worsened.

My main concern, of course is that as the MRI's have shown no changes the Gamma Knife hasn't had any effect and I'll be back at square one.

It's so difficult living day to day with the knowledge you have an AVM. When you also have TN it makes life pretty unbearable at times.

[cat3]

I'm sorry you're having such a rough time Jo and I wish there was something I could say to ease your anxiety. I am aware of this condition and of one person in particular for whom the Gamma Knife treatment has been successful after a couple of years.

Have you tried speaking to the Headway helpline for more professional advice ?

If not, they're available (free call) 9am-5pm Mon-Fri on 0808 800 2244 where you can talk to sympathetic and experienced staff.

Sorry I've nothing better to offer other than sincere best wishes. Cat x

[B_S_A]

Yup yup, I had an AVM firmly lodged in my brain as well, so I know that feeling.

My MRI scan didn't look great either, but then the angiogram showed that it had gone! Best of luck

Also, two years is still pretty early, the scarring takes over 2-5 years I think.

[cat3 in reply to B_S_A]

Ben, you probably realised I was alluding to you, but it takes on a whole new meaning coming from the 'horses mouth'. x

[cat3 in reply to cat3]

So Jo, in the light of what Ben has just said, I hope you can feel slightly more positive. (Easy for me to say, I know)

All best wishes for 26th & please let us know how you get on. x

[B_S_A in reply to cat3]

Dont worry I got it Cat

[cat3 in reply to B_S_A]

x

[Jo1972]

Thank you both for replying.

I am feeling a little more positive now, and Ben I'm really pleased to hear that your AVM has gone despite you being told that your scans looked the same. That does give me a little hope.

Naturally I'm remaining guarded as I don't want to get my hopes raised prematurely, but it nice to hear some good news.

I will give the Headway helpline a call tomorrow as I think I need to talk with someone who understands these things. Thank you for passing the number onto me. I haven't heard of them before despite seeing many different specialists. I really do appreciate your kindness at this difficult time for me.

I will let you know how I get on X x

[Jo1972]

I just thought I would update as it has been awhile.

I had an 8 hour wait for a bed the day of my angiogram. By the time I had the procedure, plus an MRI which was unexpected, I had been starved for twenty hours. I think some fluids should have been started through a drip at the very least.

The Neuroradiologist informed me during the procedure that the AVM is still there. I asked if it was smaller than before but he said he couldn't comment. I kind of wish he'd kept his mouth shut until I get my official results.

I suffered a seizure afterwards. I had never had one before. I had just been told that I could go home, and my husband and I were saying how lucky I was to be discharged as it was nearly 9.30pm. That was the last thing I remember before the seizure started. Of course I then had to stay overnight but the hospital are hopeful it was a one off.

I get my results next Wednesday. I will let you both know what my Neurosurgeon recommends next X x