United Kingdom

Views on Steriotactic Radiotherapy/Gamma Knife

Back to United Kingdom forum
Back to forum index

<-- Newer
Older -->

Hi, three weeks ago my consultant neurosurgeon at Sheffield Hospital offered me Steriotactic Radiotherapy to help with my brainstem cavernoma which is situated in the pons region.  From the stories that i have read most people have actually had craniotomies and not radiotherapy.  Does any one know why? I know it is individual choice but not many people have opted for radiotherapy. I would be grateful if anyone could post any info on here who have had radiotherapy or maybe reasons why they didn't want it etc?  I am a little confused as the consultant said to me 'No one in their right mind would operate on that!'.  Many people have had them removed from their brainstem, so i am a little confused..! Please help anyone :-) Thanks x   ???
Hi Lisa
It´s more that no one else apart from the brits insist on Gamma. Not even here in sweden were gamma was invented and is kept updated and they train new surgeons will they recommend Gamma.
UK is very much in the back waters when it comes to CCM´s and are often very scared as they do not have the knowledge.
America is the most knwledgeble when it comes to CCM´s and the guru is Dr.Robert Spetzler in Phoenix AZ he does NOT recommend Gamma.
First of all it causes tissue necrosis in the brain and secondly it takes two yrs with increased risk of a bleed before you can even see if there was a positive outcome.
If you have a pontine CCM first of all it´s in a really iffy place and therefor requires a Neurosurgeon with vast experience of CCM´s like Spetzler.
And then comes the question do the symtoms warrant a surgery as many including I live with them and only if in dire straits would go and meddle in that area.
Like if you´ve had several bleeds in a short period of time and you´re deterioating in a rapid speed and if it has gone to the surface.
if not then be aware as you might end up worse of then before the surgery and even if one rarely dies of these.But if the NS doesn´t have the experience that it reequires then you might be in real trouble.
As a foreigner you can send your MRI scans to AZ for a second opinion even if you can´t travel there they can inform you what your next move should be or should you just wait and see.

   Good Luck// ketogan
Thanks Ketogan.  One of my misunderstandings is why would they offer radiotherapy if it wasn't safe? It baffles me.  I believe my cavernoma is 4mm so would it be too small to operate on in such a delicate area? I am symptomless now and to my knowledge i have not had another bleed (apart from feeling a bit iffy 6 months after my major bleed).  How would i go about getting hold of my MRI results and sending them to the consultant in Arizona?  My consultant did mention something about taking upto 2 years before you would know and that it may work or it may make you worse?  The consultant i saw was Mr Radatz (if any one has dealt with him at all?) I tried looking up some info about him but to no avail.  
Thanks for the input, Lisa    :)
I had this conversation just the other day with Ian Stuart, the head of Cavernoma Alliance UK. I was wondering why in the UK they are so into using gamma knife for brainstem CAs, whereas no other major country seems to do so? I live in France, where I was told by the head of neurosurgery in Marseilles, where they have one of (I think) 3 French GK units, that they would only use it for life-threatening conditions.

Yet many people in the UK have had GK treatment. It makes me wonder. I'd very much like to hear from the leading researchers regarding this, because I've read the same things that Michelle mentioned about the short-term and long-term risks.

One more thing: does your CA _need_ to be removed? After all, most of us with brainstem CAs are in wait-and-see mode, partly because there's not much to do, but also because removing them wouldn't necessarily make much of a difference. Is yours bleeding frequently, or causing deficits?
Hi Kirkmc, thanks for the respose also.  My cavernoma (to my knowledge) is currently not bleeding. I am perfectly well and fine which i feel very lucky as i don't have any deficits.  I personally chose the 'wait and see' method but was referred in the mean time to Sheffield to the more 'specialist' place for cavernomas.  The neuro surgeon said 'no one in their right mind would go and operate in there' and suggested highly that i should have the Gamma Knife therapy.  He said it was up to myself if  i wanted it or not and that there was no rush, he said they will do it when ever i am ready, even in serveral years time!! He also threw quite a few stats at me explaining that i currently have roughly an accumulative 1% risk each year of re-bleed etc.  He also gave me a few stats on the GK procedure.  The wait and see procedure appeals to me more but in the same respect i really hope i do not have another bleed again.  My bleed spread 14mm in the brainstem which to me was a big bleed and i did suffer greatly from it.  I just hope if i do have another it is not going to be bigger etc.

It's really frustrating that there is not much evidence out there to suggest which procedure works best.  Like yourself i would also like to hear from the leading researchers regarding GK.

Thank you so much for the response
Lisa     :)

Check with Nicola Godsal on the CA UK site. I believe she just had gamma knife.

Hi, I have had Gamma Knife surgery on my pontine cavernoma twice. On each occassion it has greatly improved my quality of life. I am delighted that i elected to have it rather than have someone rummage around inside my head with some form of microscope cum scalpel! I daresay that others may have had different experiences, but I was very impressed by the surgeons I spoke to and to the radiosurgery team I spoke to at Sheffield. I was not rushed into taking the GK route - it simply looked like a better option than the slice and dice route. It has worked for me.

Go to the Angioma Alliance Community Hub

Go to the Angioma Alliance Forum

Go to the Angioma Alliance website