Yet More Waiting

Today I phoned The National to find out if I am a candidate for gamma knife. I have recently learnt that embolisation and surgery is not an option for me.

I was informed that my scans are not in the right format for the gamma knife team and it will be a while yet before I find out if treatment is an option.

The nurse asked how I was and I told her about the nasty spell I had three weeks ago when I had a severe pain in the back of my head and was rushed to hospital where I had a emergency scan and lumbar puncture. I was kept in for three days on IV antibiotics with suspected meningitis. All the tests came back clear but since then my left side has been very weak and I’m feeling exhausted. She told me I must learn to pace myself and not overdo things.

This is very difficult when I work full time in an engineering job. I love my job but find it very hard to keep on my toes for 8 hours a day.

She asked me if I had any upcoming appointments and I told her that I had a neurologist appointment on 14th December and she said hopefully I will hear by then.

My AVM also causes Trigeminal Neuralgia as it is located in the Posterior Fossa. From what I have researched it is not a favourable location for treatment and while I try to remain positive when you have suffered such severe pain for the last three years it begins to wear you down.

I find eating, talking, walking in the breeze,and brushing my teeth impossible. That alone was hard enough to contend with day in day out, and now there is the added concern about the AVM.

Deep down I know that there won’t be any treatment available and they are just going through the motions.

You know I had similar things happen to me. St first was told my avm was unbeatable that gamma knife was my only how then told that wouldn’t work for the likelihood of me going blind was too high. Then got another opinion and was told surgery was an option but it was very risky.get a many second opinions as possible.over doc I recommend is ft. robert spetzler in phoenix arizona. He is the world renown expert in avm having created the grading scale we use. So if thou can get more opinions.hope things start working outvbon helping you get proper trestment options.

Thanks Patrice, I’m from the UK where emergency treatment is 2nd to none but for long standing conditions things tend to grind to a halt. The hospital I’m under is one of the best in the UK and I’m hopeful that Gamma knife will be an option. I will request a 2nd opinion if The National are not able to help me but goodness knows how long that will take. The wait to see the AVM surgical specialist was several months and I ended up making a private appointment to see him. How are you doing now?