1: Sun Nov 08, 2009 5:04pm lisa.sparkesHi, 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
2: Sun Nov 08, 2009 10:10pm ketoganHi Lisa
3: Mon Nov 09, 2009 11:10am lisa.sparkesThanks 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.
4: Mon Nov 09, 2009 3:25pm kirkmcI 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.
5: Mon Nov 09, 2009 5:06pm lisa.sparkesHi 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.
6: Sat Nov 28, 2009 5:05pm ianstuLisa,
7: Tue Mar 30, 2010 11:57am tonymceneryHi, 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.
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