So finally time for an update!
I had a MDT meeting last week.
The news was not ideal. I was told that my AVM is still a grade 4 and still the same size. What the embolisation did was suceed in reducing the flow considerably.
The AVM is still very complex, it has been glued in the centre and now has bits of AVM around that central part. Sort of looks as if I have 3 AVMs around the centre gluey part.
There are many feeders, too many to count. This includes two main arteries: Posterior-Cerebral and Middle-Cerebral.
In terms of treatment:
- radio-surgery (Gamma Knife) is not an option. My AVM is far too diffuse in structure or “bitty” as they discribed it. My AVM also has lots of glue in it which reduces the effectiveness of this technique. It will not fully treat my AVM.
- Standard Embolisation is not an option because my AVM has too many feeders.
- Craniotomy is not an option. The fact that I would 100% have total right side visual field loss in both eyes is not the concern. The risk of a death is far too high to consider it.
The only potential option is trans-venous embolisation. This is a very new technique, only 100 or less recorded cases. The AVM is glued via the “drainage” veins side only. The leading neuro-radiologist in the UK in this area, Dr Pete Cowley, was at the MDT meeting. He does not feel comfortable with operating on me because the risks of this option is so far unknown. If it went wrong I would be highly likely to die or be considerably disabled. As far as he knows so far only AVMs with a single drainage vein have been treated this way (I have several) and my AVM is larger and more complex.
Dr Cowley said if it was him or his close family there are only two other people whose opinions he would trust. They are both at the forefront of research and experience in treating AVMs via trans venous embolisation: Prof Charbel Mounayer in France and Prof Rene Chapot in Germany. I am going to call in to request for both their opinions. No idea about costs abroad, I have no private health insurance and fully rely on the NHS. I have little expectation but atleast I will have peace of mind once I have exhausted all my options.
I will have to mention to these specialists though about my radiation exposure. During my embolisation I was exposed to 12 gray which is over 6 times the maximum standard for this procedure. I will have been exposed to slightly more than 12 gray when including angiograms. Above the 20 gray threshold and I have a high likelyhood of damage to vessels in my brain and potentially begnin tumours over time. Also for angiograms and embolisation higher radiation output will be required to see through the huge amount of glue. When considering trans-venous embolisation, radiation exposure will be particularly important.
Unless anything changes, I will be monitored annually from now on. I have been told I can carry children so far as I have a relaxed pregnancy and have a C-section. I am allowed to do all activities except from contact sports and heavy lifting. So I just carry on with life now I know where things stand!
It is disappointing but also somewhat a relief to know where I stand so I can make plans moving forward. I am going to see my neurologist, Dr Alexander Leff. He will help me with visual processing(his specialism) and concentration rehabilitation. I saw him earlier last year but he asked me to see him again once I had my angiogram and MDT meeting. He will also either help me with my chronic fatigue management or refer me to a occupational therapist in this area. Action is being done to help me start my career working to my best capability!
I also have non-AVM health stuff going on. I am seeing a endocrinologist on the 21st this month following multiple blood tests showing raised levels of prolactin (changed since this was last checked out 3 years ago). Since I have additional symptoms potentially linked to me having a Prolactinoma (begnin pituitary tumour) they want to have an indepth look. Hopefully I get the all clear though!
Other than that, my poor ankle is recovering after completely rupturing my ligaments back on NYE - started the new year on the wrong foot aparently
Belated Happy New Year to all!