Dear everybody,
I have just had my second craniotomy in April at the same hospital and with the same team where I had been having such appalling communication problems…the reason for not moving somewhere else or getting a second opinion was probably due to pure frozen terror and exhaustion.
I found out something pretty shocking in the course of all my neurosurgeon’s investigations as to why my dural fistulae are reconnecting themselves and why I have an unrecognisable erratic network of fine blood vessel regrowth pretty much in the same place.
The hospital genetics department found that I am a positive match for the PTEN gene Hamartoma Tumour Syndrome. This broadly means that I don’t have normal genetic control over angiogenesis, form scars badly and have a much higher risk of cancer throughout my body. I already have had a diagnosis of breast cancer and now have pre-cancerous changes of the womb.
This probably overlaps with a post that I read from someone else on this space about anti-angiogenic drugs for AVMs and dural fistulae, and yes, my neurosurgeon is convinced that I should take his advice and go on Sirolimus medication. My body and mind are completely wrecked after 14 hours of craniotomy surgery and I disagree for now.
I think I can cope with the gene defect diagnosis because at long last, I don’t need to put up with the “oh, you’re so unlucky” excuses from my consultants and I can tell them something concrete which they can go and read up about…or ignore as I have now found out. As part of my craniotomy, one of the interventional radiologists did angiographic imaging to give my surgeon the most accurate information on my brain in real time. At the end, my femoral artery was plugged with an Angioseal device. My patient consent was ignored/forgotten about.
Roughly 2 months later, I have hardening and scarring thickening around my groin puncture site, pain and weakness around my right leg/hip area. The vascular surgeon is telling me to wait until it has all dissolved and completely ignored my explanation about my PTEN gene defect increasing the risk of my forming an artery-venous fistula. I’ve been told by her that if I don’t accept an appointment of an ultrasound examination for my femoral artery in July (I have begged for June but been refused), I would not receive another appointment. The ultrasound department have told me that they could have fitted me in but would have needed the consultant’s approval. My GP has told me that I am being bullied and he is making a referral to another team of vascular surgeons at another hospital.
My neurosurgeon is not getting involved at all. I am nearly always in tears but believe that my care at that hospital has now completely collapsed. They are offering no acknowledgement of post-surgical trauma that I have also experienced (was shouted into a waking state but whole body stayed paralysed and I couldn’t see but no-one reassured or explained things to me and my neurosurgeon has no comment).
Am I going/gone mad? I have a horrible feeling that I must change neurosurgeons. Please, please does anyone have some positive recent experiences with neurosurgeons in Oxford, UK, or London?
Hoping that everyone is as well as possible.