Replies to This Discussion

Permalink Reply by Paul Nearn on March 28, 2011 at 12:45pm

Sam

 

Thanks for the great reply and what a excellent video mate :-)

 

Xmas i was in for 3 days (inc xmas day). The embolization op was fine but a few hours later i had an the allergic reaction and CT scans later showed the swelling in the area around the brain. I had a secondary stroke during that reaction and went downhill pretty quickly. Never had a headache like it. They put me on some hard core pain relief and stayed in the HDU so i was away with the fairies but once they diagnosed the swelling and started treating it with steroids it improved pretty quickly. Sadly that secondary stroke was when i got the right hand paralysis (after the initial stroke in oct i couldn't my entire right shoulder/arm/hand but it had all started to come back before the xmas)

 

Fingers crossed the hand may get better but it hasnt as yet. have gotten very use to doing everything left handed, that and velcro shoe straps!

 

So thats why they wont do the embolization again and now want to do radiosurgery. Was actually offered the gamma knife in Sheffield but my wife and i would rather be near home with the kids tbh. Think the procedure we'll have is this one with the mask 

www.precisionradiotherapy.com/PE-RadHead.htm

 

Think its now quite small (1cm square) so assumed chances of rebleed would be reduced but told that theres no evidence to support that. So have to live with the risk for a few more years. Just need to get travel insurance now for a holiday somewhere warm!

 

Tks again for your reply

Permalink Reply by Samuel Shoesmith on March 28, 2011 at 3:23pm

Hi Paul,

 

I had a brain haemorrhage in October 2007 and was diagnosed with an AVM somewhere at the back of the head (can't think of its proper name).  I am 18 from Northamptonshire, England.

 

How long were you under for your embolisation over Christmas?  Such a shame to hear about an allergic reaction and its consequences.  So, you've lost all feeling in your right hand?  Has it improved at all?  I hope it comes back soon!

 

I have had few embolisations.  The first one was 10 days after my bleed when the swelling had gone down and I was good to go – or rather my brain was.  The Doctor didn't get enough so a couple of months down the line I had another one.  And then another one.  He tried and tried to get it all but sadly this ended up gluing the blood supply to my right ear. :(  These embolisations didn't get rid of the entire AVM but had instead split it up a bit.

 

In February 2010, I had Stereotactic Radiosurgery up in Sheffield.  The worst part is having the frame fitted.  The actual procedure doesn't hurt or make a noise.  I wish I had brought my own iPod.  I had a collection of podcasts I could have listened to but I didn’t remember them saying about bringing it in, in the consultation.  So I listened to one of the nurse's iPods.  I was in the machine for three hours.  I now know every lyric to many songs.  Haha...joking.  Check out my video http://www.youtube.com/watch?v=UeL0VznAi-c - It's my Stereotactic Radiosurgery journey.  And the bit after my frame fitting is a bit tummy turning.  It wasn't that bad and it didn't hurt after long!  Don't be put off.

I think my AVM was relatively large.  I had the bleed when I was 15 and the consultant said that if it was left as it was (before the many embolisations) I would have more than likely had another bleed before 30.  The risks grows 12% per cent year on year – scary stuff!  

Yeah, a small AVM would probably have less chance of bleeding but it is better having no chance than there being a chance at all ;)

 

Look forward to hearing from you soon,

 

Samuel Shoesmith

 

PS.  I reread over my post and noticed a bunch of mistakes.  I am too much of a perfectionist and had to change them.  Haha.  This is why I have removed it and re-added it.

 

Permalink Reply by Samuel Shoesmith on March 28, 2011 at 3:34pm

Hi Paul,

 

Thanks for your great reply too.  Ohh, no, what a horrible way to spend Christmas Day!  Ahhh, it's such a shame to hear about your that allergic reaction.  I never dreamt that I could have had an allergic to the glue! 

 

Fingers crossed you get the use back soon!

 

I didn't know they had another Gamma Knight hospital in the UK/Scotland.  I never knew about that mask!  I was only offered the frame.  So the mask is not drilled into your head at all?  

 

When are you going in? 

 

Talk soon,

 

Sam

 

Paul Nearn said:

Sam

 

Thanks for the great reply and what a excellent video mate :-)

 

Xmas i was in for 3 days (inc xmas day). The embolization op was fine but a few hours later i had an the allergic reaction and CT scans later showed the swelling in the area around the brain. I had a secondary stroke during that reaction and went downhill pretty quickly. Never had a headache like it. They put me on some hard core pain relief and stayed in the HDU so i was away with the fairies but once they diagnosed the swelling and started treating it with steroids it improved pretty quickly. Sadly that secondary stroke was when i got the right hand paralysis (after the initial stroke in oct i couldn't my entire right shoulder/arm/hand but it had all started to come back before the xmas)

 

Fingers crossed the hand may get better but it hasnt as yet. have gotten very use to doing everything left handed, that and velcro shoe straps!

 

So thats why they wont do the embolization again and now want to do radiosurgery. Was actually offered the gamma knife in Sheffield but my wife and i would rather be near home with the kids tbh. Think the procedure we'll have is this one with the mask 

www.precisionradiotherapy.com/PE-RadHead.htm

 

Think its now quite small (1cm square) so assumed chances of rebleed would be reduced but told that theres no evidence to support that. So have to live with the risk for a few more years. Just need to get travel insurance now for a holiday somewhere warm!

 

Tks again for your reply

Permalink Reply by tee on June 9, 2011 at 4:34am

Hi there I was in hospital for just over 5 weeks at xmas and had radiosurgery ,although i cant remeber having it .But i am told by the specialists i did not feel it at all .I am now out of hospital and waiting for a reply from sheffield about whether they can do a gamma knife.

Permalink Reply by Ab on September 9, 2011 at 3:35pm

To everyone who are looking at radio surgery please do look at stanford and cyberknife. Dr. Adler and dr dodd are the lead. For embolisation I would highly recommend dr houdart at hospital lariboisiere in paris ( next to eurostar station). My son had spinal avm and he helped us deal with it when no else wanted to touch it. He is light years ahead of anybody in uk.

Permalink Reply by tee on September 13, 2011 at 4:55am

Hi Paul i will be going for gamma knife surgery in the next 2 weeks ,for me the worst thing will be getting enough rest as i dramatically go down hill if i don't have enough sleep. The radio surgery will have no immediate effect ,it should take about 6 months to cause inflammation ,then hopefully when healing happens the avm will block off. I am not really worried about the treatment as without treatment i will not last long .Anyway enough doom and gloom .I hope i have been a little help regards tee