Oh dear, what happened here?
Thanks for the advice, but I do not need it. I was and am fully aware that there are no guarantees with this procedure. I went in May knowing that it was not a cure, I hoped that my MS stablised and did not progress. I also hoped that I may experience some reduction in my daily symptoms.
When I had the procedure I was satisfied that I was doing all I could to help myself, that was a great feeling after years of frustration and feeling that I was on a slippery slope and there was nothing I could do about it.
If I look back at my journey since finding out about CCSVI I can say that I have been liberated quite a few times already...
Firstly for the first time since being diagnosed over 10 years ago I was given hope with regards to my MS. The hope spurred me on to read as much as I could and I made the informed decision to follow my gut feeling, it all made so much sense to me. (Liberation 1).
Secondly, Once I had decided that I wanted to follow this route I was on a high but was brought down to earth with a bang once I found out how much this was going to cost. I tried to find someone in the UK who was willing to perform the procedure and I was met with a dead end. I was totally deflated and the frustation was overwhelming. However, my lovely family stepped in and said that they would cover the cost if I was sure that this is what I wanted to do. (Liberation 2).
Thirdly, once I had made the decision and was given the financial resources to follow it, ( something that I am well aware that other MSers do not have the privilege of, and that saddens me deeply), I made an appointment with my Neurologist to keep him informed. Only to be told that I was making a big mistake, that he was against the idea, and basically that I should not go. After listening to his advice I informed him that it was my body and I was willing to take the risk. I thanked him for his concern and told him that I would keep him updated. That in itself was so liberating! For once I was able to make my own decision regarding my own health. (Liberation 3).
I went to Poland in May with a feeling of hope and dread. Hope that this could help me in some way and dread thinking that they may perform the tests and tell me that I did not have CCSVI, what then?? They did the test and confirmed that I did and that feeling of dread lifted, there was something they could do!! (Liberation 4).
The following day I had the procedure, I was nervous but excited at the same time. The sense of expectation was quite exhilarating, what did the future hold, this was something I had not felt for a long time with regards to the MS. I was not disappointed in the days/weeks that followed. I experienced a reduction in many of my everyday symptoms and had more energy than I knew what to do with. My balance was 90% better. My head was clearing, my tremour was less, my feet and hands were warm. This brought home to me just how much the MS was affecting me and I could feel improvements! ( Liberation 5).
Slowly over the past 6 months or so I have been noticing that I am experiencing more fatigue and my head is not as clear as it was. This was something that I was aware could happen, but hoped that it would not. Although I did feel down about it for a short while, I was also aware that the same options were available to me. I made the follow up appointment and am going again on Wednesday. My family have come to the rescue again and are funding the second visit, for which I am truly thankful. Again I have hope and am excited about the future. (Liberation 6).
That said, I think that this may have to be my last trip as I cannot expect my family to keep putting their hands in their pockets. Hopefully, this trip will keep me going until the procedure is available here.
Although this is a long winded answer, I suppose I can sum up by saying that I am going for the second, fully aware that there are no guarantees and although I cannot afford a third or fourth I would have the procedure done every month if it was available, accessible and near to home.
Unfortunately this is not the case yet. I say yet, because I truly believe and hope that there will come a day when this is available to all. I just hope that the experiences of those of us who were willing to take the risk in these early days will be of benefit to those who come after us.
As you can see, this has been a rollercoaster of a ride for me and those close to me so far. I do not know what is around the corner, I just hope that it is one of those steep inclines and not one of those stomach churning dips. We will see...
Alone we can do so little, together we can do so much