The wait has been excruciating and filled with anxiety as most people on this forum who have been through it can testify too.
It is not just the waiting though there is the thought that the journey you are about to embark on might not give you the desired outcome. To each of us that have these little aliens in our heads and elsewhere this is an entirely personal decision balanced by the information given to us by our Doctors and Consultants whom we must trust.
I’m sure most of us have come away from a visit with our consultant with our heads spinning from percentages of this happening against percentages of that happening.
In the end, in my case anyway, it all filters down and distills into a decision!! No right or wrong decision, just a decision that feels right for me.
Last Monday 16th March 2020 I went off to Sheffield for my long awaited appointment to have Gamma knife treatment for my right sided parietal lobe AVM.
Just to ramp up the pressure a bit though, life throws in a bit of curved ball, why not, as if having your brain blasted with Gamma Rays is not exciting enough!! Coronavirus Covid19.
As we travelled up to Sheffield the day before my first appointment I was prepared anytime for a phone call to say that my treatment would have to be postponed. Fortunately it never came. In fact the only phone call I had was one from a member of stereotactic team to confirm my appointment for the next day, as if I could forget.
The next day I went to meet two of the team who gave me run through of the procedure that would happen the next day. Treatment day. I was also given a pack of six steroid tablets and some Ranitidene pills which were to help mitigate the effect on the stomach that can sometimes happen when taking these steroids.
On Treatment day I was admitted to the neuro ward at 11.00am where I had to change into a hospital gown. A lovely little bare bum number which I’m sure most people will have come across in hospital.
After a short wait I was collected by two of the stereo team and taken to have my frame fitted.
This part was the only part of treatment day which could be called in any way traumatic.
The fitting of this frame has to be solid, it can not move at all as all of your treatment is referenced off of it. It is clipped in to all of the machinery that is going to be part of the treatment, MRI Angiogram and finally Gamma knife.
The frame is held in place by four pointed pin screws which screw through the skin into the skull.
A local anaesthetic is injected into the skin and this stings a bit. The screws are tightened in sequence and eventually finally tightened with what seems like a torque wrench which clicks when the screws are correctly tightened. None of this is as bad as it sounds!
After the frame fitting the first stop for me was the Angiogram. This was not as long or complex procedure as that I had before. I was told this was because from my previous images they knew exactly where to go. I had the usual contrast dye and images were taken of my little alien friend.
After the Angiogram I was given an MRI which again did not take as long as previous ones I have had elsewhere.
There then followed a period of about 90 minutes during which time I was able to have a rest and wait while a treatment plan was decided on.
I was then wheeled into the gamma knife suite where I was told how long my treatment would take, in my case 62 minutes.
The Gamma knife itself is the usual doughnut shaped instrument rather similar to an MRI scanner excepting there is more room in it and it is not as claustrophobic.
There the similarity ends as the machine is completely silent the only noise you can here is a low level beeping which is completely drowned out by the music you have selected to listen too while you are in it.
After my 62 minutes was up the frame was removed from my head and I was taken back to the neuro ward for a cup of tea and some food.
I have to say at this point that the friendliness and professionalism of the staff that accompanied me through my day of treatment was outstanding. I had the same two people who came to get me in the morning to start my treatment with me all day and they delivered me back again They were constantly observing me and making sure I was comfortable and always ready to answer any questions I had. So to Pat and Robin (favourite colour green not purple) I cannot thank you enough for your help and dedication.
After a not so restful night on the ward and my pin screw site and groin angio point being inspected I was discharged. I was told to take it easy for 48 hrs and keep an eye on my pin points and angio site.
At the time of writing this I am at home and it is now 48 hrs since I had the treatment.
It is far to soon to say anything except that I don’t have any side effects from the treatment at the moment. I hope this is the way that it stays until my two years are up and I go back for an MRI to find my little alien friend has been OBLITERATED!! and good riddance.
In writing this I hope to give some insight as to what happens on the day and take some of the mystery and scariness out of it. There is nothing to be frightened of.