My Story

I think the starting page you need is here:

Thank you. I think I need to do some research and, as you suggested talk to my GP and consultant. It seems from what I know at the moment that as soon as you have a seizure of any sort caused by any reason you are immediately classed as having epilepsy by the dvlc which, I think is unfair.

If you get a consistent ten-minute warning of onset, it may help to get you back driving but I agree, a lot of people with epilepsy have a hell of a time with DVLA. However, clearly, you need enough control of the car to be able to stop safely if you feel something coming on, including on a motorway, and not be a risk to yourself or to anyone else on the road. It’s tough but you wouldn’t want to have an incident in which someone else was seriously injured (or worse). You’d carry that with you forever, not just a year.

Good luck!

Richard

Hi - I had gamma at Sheffield a year ago for AVM frontal lobe discovered after car accident (age 50!). Not great experience having head thing fixed but that’s the worst of it - team very friendly and helpful. No side effects in a year. Have to say follow up care non existent but if you have a good GP (which I don’t ) sure that would help. Good luck and don’t worry - its a breeze! xx

Thanks for your reply it’s very reassuring to know of your positive experience.
I had a phone call from Sheffield today and my treatment is imminent. The waiting is the worst thing.
Micko

It is.

Good luck Micko…They can play any music you want while you’re having the treatment. Mine was just the right length for Echoes by Pink Floyd!

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Double :heart: :heart: for that!!

Hi Micko,

I had Gamma knife surgery in July 2018 for my left occipital AVM. I was very apprehensive about the whole procedure. My team were excellent from start to finish.

The part that made me cry the most was having the metal frame put on my head. I didn’t feel anything as they give you four injections to numb the area but I think it was more the realisation that this was real.

The procedure itself is like having a CT scan. I had the radio playing and I mostly feel asleep for the 1.5 hours procedure.

After the procedure I had an awful migraine in which I was very unwell for the first two nights (vomiting all over my bed!). I was started on anti- epileptic medication which did not agree with me as I experienced rage, anger and constant anxiety for 2 months.

Everyone responds differently to the procedure and everyone’s recovery time is different. My advice would be to take each day as it comes and don’t pressure yourself into trying to get back to ‘normal’ as soon as possible. Be kind to yourself and allow the brain time to heal.

Easier said than done- I know, but I’m still feeling the affects nearly 2 years down the line. So it takes time.

All the best.

23 minutes according to iTunes that was quick.

Thank you for reply.
As you say very body experience is different but I will try and persuade myself that I must take it easy and follow doctors orders, not easy when you are in the middle of a house renovation :slightly_smiling_face:
PS where did you have your treatment?

Exactly…3 shots of 8 minutes. Although my AVM is 3.5cm diameter/13cm3 volume they only needed to target 3cm3. This was only confirmed at the point of treatment once the gamma plan was run.

Hi Micko,

I know the feeling. I’m a nurse so I’m a terrible patient. I felt the need to get back to work quickly.

I had my treatment at the National Hospital for Neurology & Neurosurgery. :blush::+1:

I was the worst when they were fixing the frame - in honesty it didn’t hurt as much as I was expecting but I still yelped!! They ignored me - obviously heard it all before. After that it goes pretty quickly and just take the opportunity to be still and relax for a bit - no mobile phone !! Good luck and let us know how it goes. You will wonder what you were panicking about!

Thanks everybody for you input on this topic, you have helped me to deal with the anxiety that waiting around has put me through.
Well the wait is almost over. I had a phone call this morning from Sheffield I am to receive my treatment next Wednesday. I should be back home on Thursday if all goes well.
I know this is the end of the wait for treatment but the start of another journey which will, eventually lead to the obliteration of my AVM. I will post on here to let you all know how it went. :smiley:
Micko

Good news Micko, and best of luck for the day. I’m having my first post SRS scan tomorrow at KCH, 8 months after treatment. I had 50gy to the right occipital.

Remember, experience after SRS is variable, you may have no symptoms whatsoever. Personally I had some fatigue for a few weeks, and worried enough to call Sheffield who were very reassuring. I honestly think the whole build up through the initial
bleed, diagnosis and treatment planning take it out of you and may explain my own symptoms. The main thing is it passed after a few weeks and I’ve felt great since.

All the very best and let us know how you get on.

Jonny

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Hi Micko, good luck with your gamma knife. I too have an AVM in the same place, no bleed and had gamma knife nearly 2 years ago. The angiogram first was the hardest then being inside the scanner for 72 minutes but I’m so glad I did it. The waiting game is tough though and I’ve had lots of headaches and stress related symptoms. This site has been a huge help especially following John’s, JD12, story and I wonder if John can tell us how big his AVM was and how long the doctors told you it would take to go thanks. Hearing other people’s experiences, although emotional, can be a great help. All the best. Gill.

Thanks gill.
It’s good to hear from you about your experience.
I am off this morning to Sheffield in the hope that I will still get my treatment on Wednesday, Corona virus permitting. I have looked their website this morning and they are still asking patients to attend their appointments so I am hopeful. This is an unwanted development in a stressful time. :frowning_face:

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Thanks Jonny

Micko,

I assume you are still up for your op tomorrow, so I just want to send you my very best wishes. I’m sure it will go just fine and in many cases it is a matter of minutes.

As the guys have said, the “halo” is rather uncomfortable and you’ll almost certainly have quite a sore head for a few days afterwards but everyone here who has gone through gamma knife has got out the other side ok. It’ll be fine (or, as we are learning that they say in Italy “andrà tutto bene!”).

Very best wishes for a good day.

Richard