By now I had been hoping to tell you that after 27 years of MS frustration, the worm was beginning to turn - things were starting to look up!!!!! However, no such luck unfortunately.
As I advised earlier, on 2 October I went for a CCSVI intervention 'operation' at a hospital in Melbourne. This had been set up and was to be performed by a Melbourne Vascular Surgeon who I had made contact with. However, in the end the 'operation' was a complete disaster, a non-event or WOFTAM
as we used to say about just about everything we did in our uni coursework (W
My wife had gone through the Yellow Pages, a bit hit and miss, early September and this VS seemed promising as he was at the phlebology conference in Monaco at that time and after the conference he and his wife would be touring Italy at the time of Prof Zamboni's conference on 8 September in Bologna - Perfect!!
I sent an email to his secretary in Melbourne, asking her to forward it on to the VS. In the email I explained about CCSVI and MS, attached research papers and a copy of my medical report detailing that I had blocked jugular veins. How did I know my veins were compromised? ...........Well, that is another story which I will come to later. I suggested that whilst travelling through Italy he might care to make contact with Prof Zamboni's office in Ferrara and get a late invitation to Bologna on 8 September.
The VS's secretary said she had passed on the email to the VS. Later, she contacted me, told me that the VS had heard Dr Simka's presentation in Monaco and was quite interested in CCSVI. She invited me to a consultation with him on 21 September - fabulous!
At the consultation, he jumped right in there and said he would balloon my right refluxed jugular but was not sure about the fully blocked left one, but he would think about it. Also, he would try to contact Zamboni and Dake prior to the operation which was scheduled for 2 October. He said he wouldn't need an anaesthetist or assistant as he was an expert vascular surgeon, whilst Dr Dake was only
a radiologist - fine, this guy knows what he is doing!
In the lead up time to the operation there was hospital paperwork and so forth to do. I didn't hear from the VS and I didn't try to contact him. In principle, I believe that if you are employing someone to do something and they seem competent, it's counter-productive to get in their way. I'd just go with the flow!
Outside OR on the morning of surgery, an anaesthetist came up to me in bed and said I'd be having a general anaesthetic. He told me of his charges and got me to sign something, without my glasses on. I saw the VS in the distance. He gave me a sliding wave but didn't come over. So I asked the anaesthetist about the procedure but he quickly cut me off. I had with me a copy of an email from Prof Zamboni which I asked the anaesthetist to pass on to the VS - the anaesthetist picked up the email like it was a pair of dead undies, didn't look at it and dropped it back on the bed.
Next thing I'm being whisked into OR, tied down by the arms and anaesthetised. I tried to get one of the nurses to give the Zamboni email to the VS who was keeping his distance but she just put it away in my file. The VS was being suited up for the venogram. Eventually he came up as I'm passing out and said 'Good Luck'
-and that's all he said!
Half an hour later I'm waking up in Recovery. The VS said I wouldn't remember a thing. He said they didn't see any stenosis in the left jugular. I asked how the ballooning of the RJ went. He replied that I had asked him to stop the operation because of patient pain so he obliged. I was flabbergasted but when I tried to ask him more, he took off!!
I then spent a couple of hours in a hospital ward. I asked the nurse what was happening. She thought I would be stayng over night but I understood it was a day procedure. I asked when I'd see the VS and she said probably not today as he was in OR all day. So I asked to see my patient's file. She said I wasn't permitted to see the file
but she could read me bits. It was not very detailed - LJ no stenosis, RJ operation stopped due to patient pain.
The VS came to see me for literally 1 minute
at about 2.30pm. He had to be somewhere else at 3pm, so he didn't have time to answer any questilons. He said I could go home now and had organised for me to come and see him in his office in just over 2 weeks.
That was it! That was my CCSVI intervention treatment
. It seemed a far cry from the glowing feedback from the Dake and Zamboni operations. What do you guys think??