Dear Dr Sclafani,
I’d like to get your opinion on my case, please.
I’m PPMS since 1981with one spinal lesion and one or 2 other smaller lesions; walking with crutches, weakness, poor balance, spasticity, fatigue etc but no apparent sensory problems (except as discussed below).
My right side is worse than the left. Approximate ability level of my limbs are as follows - right arm (say) 2 out of 10, right leg 3/10, left arm 4/10, left leg 5/10.
I saw Drs Simka and Ludyga in Poland, in November 09 and they inserted a stent to my right jugular at the valve/collarbone level - minor improvements followed. Dr Simka thought, from the MRV that I had high level stenosis of the left jugular but Dr Ludyga was not prepared to operate as I was only their third patient.
Prof Ken Thomson in Melbourne has performed angioplasty on me a couple of times – first time, April 10, he ballooned at 5 places including the left jugular but not up high. I had very positive improvements including much less spasticty and better balance. However, improvements dropped off.
I have read from others that there is a brain to limb opposite side relationship – eg GiCi who was treated by Prof Zi, recently commented on this.
My left side limbs are OK and therefore the stent and work to my right jugular might be working. My problems are my right body side, which could point to a problem with my left jugular and particularly high up. To add weight to this hypothesis, I have an increasing peculiar sensation to the back left hand upper corner of my head, almost to the top of my head – electric/fluid flowing sensation inside the skull, hissing in left ear and head pain.
I would like to get my left jugular looked at, high up and treated if necessary. The options seem to be:
- Prof Thomson, but his good work has been put on hold pending a ‘study’.
- Poland – they have done over 500 cases now, so should be more confident.
- Egypt, Bulgaria etc.
Do you have any views on my CCSVI problem or treatment?
Regards and thanks,
PS You are doing a magnificent job and really adding much needed depth to this whole emerging field of study - thanks.