I have been offered gamma surgery for my brain stem cavernoma. It has bled once. Has anyone had this treatment?

[Warwick]

[fjgent]

I'd say it's worth going to the Cavernoma Alliance Facebook page where the same question has recently been asked. Gamma knife treatment's efficacy is disputed by neurosurgeons. I personally cannot say obviously.

[Pinkpatsy]

I have not had this treatment but I do have a brainstem cavernoma and have had another one removed by surgery. My cavernoma is not suitable for gamma knife and it has bled. The evidence for gamma knife is controversial but is a matter for personal choice. The other option is to watch and wait - cavernomas often settle down again if left alone. The Cavernoma Alliance Facebook page is a good place to discuss as fjgent suggests.

[BelindaC]

I had Gammaknife surgery last July...mine bled once also (Oct 2005) but an increase in numb/tingling sensations (normally following illness or stress) was enough for my consultant to refer me to Sheffield...As far as the treatment went, it took about two weeks to feel 'back to normal' as it can make you feel very tired (slept for most of the first week afterwards)...I have my first follow-up appointment on 6 Feb, will most likely book an MRI soon after.

[Lamouette in reply to BelindaC]

Hi

Am I allowed to ask which surgeon you are under at the Hallamshire

[Warwick in reply to Lamouette]

I am under Dr Radatz at Sheffield.

[Warwick in reply to BelindaC]

Thank you for your info. I only had my bleed last May and am now almost back to normal so cannot make my mind up about gammaknife. Going back to Sheffield next week for a second meeting. Have you seen an improvement since the treatment. Iam female and in my 60's.

[Trish5 in reply to Warwick]

Hello Warwick, I was wondering if you'd decided on the GK treatment eventually. I am in the same position now as you were then. Don't know if I should have it done or not. If you are still using this site, I'd be grateful to here what you decided to do. Thanks, Trish.

[Warwick in reply to Trish5]

I have the gamma treatment in Feb 13 after having one bleed in my brain stem. At the time of the treatment I was back to normal. The treatment was done and I had no side effects. After a few hours rest I was fine. I have not had any bleeds since. Yearly MRI Scans shows no problems and have now been signed off by my neurosurgeon. Good luck what ever you decide. Xx

[Trish5 in reply to Warwick]

Thanks, Warwick for the quick reply, glad you are still on the site. I know we all react differently but it still helps to see what others have experienced. I'm glad all you MRI's have shown 'normal' , so much so you've been signed off by your surgeon, that's great news. Trish x

ps . my need for the gamma knife is that I may have to take anticoagulants later on. I think the risk of bleeding while taking an anticoagulant is less after the GK surgery although my doctor says the cavernome won't go away completely.

[Warwick in reply to Trish5]

The treatment dries up the cavernous over time. But it still shows up on the MRI. I have been lucky that after the one initial bleed which was quite bad and recovered from over a couple of months I have had no problems. X

[Trish5 in reply to Warwick]

Was the bleed before the GK ?

[Warwick in reply to Trish5]

Yes in May 2012. I had recovered by the time I had the gamma treatment. I saw the doctor at Sheffield twice before the GK. As I was feeling back to normal. In the end decided to go for it in case it bleed again. X

[Trish5 in reply to Warwick]

Thanks, again, Warwick, Now I understand. I don't think I've got much choice other than to get it done as the doctor thinks I might have Atrial Fibrillation in which case I'd definitely need blood thinners later. That's why it's reassuring to read positive posts like yours.

I'll come back on the site to let everyone know how it went.

Trish x

[Warwick in reply to Trish5]

Good luck x

[Lamouette in reply to BelindaC]

Please who are you under at Hallamshire I posted this and must have done something wrong as a different person replied - Thank you Warwick I much appreciate your reply

[Trish5 in reply to BelindaC]

hello Belinda, You might not see this as it comes four years after you posted, but I was wondering if you have had any side effects since your GK surgery. I have to consider it because I have a cavernoma which has bled but no symptoms but I need to take an anti coagulant so have been advised GK. Thanks, Trish.

[Mlew10]

Hi warwick. How did your second apointment go. I have a brainstem carnoma with numbness down one side. I have had one bleed also My nuro is thinking about gamma knife to stop it bleeding again.

[sparky999]

Hello, i have a brainstem cavernoma. I had one bleed May 2008 (diagnosis). I then followed the wait & see approach for 4 more years then had gamma knife in October 2012 in Sheffield due to my lesion increasing in size. I have recently had another bleed January 2013 to which i am still recovering from. My NS does not think the GK has anything to do with this bleed as GK would not have taken effect yet.

[Warwick in reply to sparky999]

I had the GK treatment at Sheffield in Feb.2013 and so far everything is going well. Hope you recover soon. Keep us posted on how you are getting on

[sparky999]

Hi Warwick, hope you are well. Are you glad you had the GK? I am still happy i had it too. I am feeling much better since my second brainstem bleed, however i am still weak/numbish down my left side with a fuzzy left hand now. I am back to full time working hours too - thankfully

[geese]

I had gamma knife surgery in 2007 for a brain stem cavernoma at Sheffield Hallam and been fine since. Had regular mri monitoring until March 2012 . Then last october I had a short episode of Diplopia. Subsequent mri and visit to neurosurgeon has shown I may have had slight bleed causing a mini stroke. No real answers or help and I'm left confused and a little scared. I'm glad I had gamma as cavernoma is otherwise untreatable but still unsure of future risks.