My CCSVI journey began at the MS Walk in 2010. My parents spoke to Kerri Cassidy’s parents and came home with a CCSVI pamphlet.
It wasn’t until just before the MS Walk in 2011 that I had gone for a Doppler Ultrasound on May 9th to discover my Right Jugular vein had distal stenosis and refluxing blood flow in the right vertebral vein & my Left Internal Jugular vein had distal stenosis. CCSVI.
On the 18th of August 2011, Dr. Manfred Spanger performed my first venography and venoplasty. My Right Jugular did not appear to have stenosis but showed signs of having been compensating for the Left Side and was dilated easily with a 14mm balloon. My Left Jugular had distal stenosis, reflux & collaterals. When 14mm venoplasty was performed it was quite tight and I could feel it “pop” as the balloon inflated in my vein. As soon as the flow patterns were returned to normal, the cloud in my head that had been there so long – evaporated!
I have had two CCSVI procedures so far and the first had the most dramatic effects on my life. First was the cloud vanishing from my head, the MS fog that affected my ability to be at a party or in a crowd and focus, concentrate or even enjoy myself!
I also felt sensation come back to my hands and could feel temperature better. After about 6 to 8 weeks Tingling in my legs improved, fatigue and energy improved, heat intolerance wasn’t so much of an issue for me anymore. Basically, life improved. Yes, I still have MS and I still have to pace myself and avoid stress as best I can etc… I just got a bit of the old Robyn back!
Some MS things started to return about this time last year in 2012. Fatigue, brain fog, moods, tingling. In October I had another Doppler and it showed my left jugular was pinched in two places so the blood was not flowing so well. Venogram and Venoplasty #2 happened on 8th November 2012. Only the Left Jugular had a tight stenosis at the top and needed a high pressure balloon to “pop” it open. The lower end required a 14mm balloon. The second time round hurt more and the symptom relief was not so immediate. 6 to 8 weeks and I started feeling the benefits with fatigue, energy & sensations, mood etc.
Every December I go for my MRI checks and both in 2011 and 12 have had “glowing” reports. No new lesions, no active existing lesions. In fact, my spinal lesions have seen improvement and faded!
I was diagnosed in November 2007 with relapsing remitting MS and started Copaxone in January 2008. I stopped Copaxone in May 2009 to have a baby and re-started Copaxone in October 2010 when my daughter was almost 7 months old.
Copaxone started to hurt. I scar easily and most of my injections went to my tummy as was easier to self-inject there. I stopped Copaxone in July 2012 as was having issues with injection sites, didn’t want to travel overseas with my injections and at the time was thinking we might try for another baby.
After returning from overseas my symptoms were not great and I had my second CCSVI procedure. In this time we decided no more babies and I decided to see what the MRI was going to say after no Copaxone for almost 6 months. The MRI was as good as the MRI the previous year, no different to when I was on Copaxone to when I wasn’t. I haven’t ruled out other MS therapies, I’m just trying what is working for me right now. A healthy dose of better, cleaner eating, lots more exercise, self-hypnosis & working on a lesser stress lifestyle.
I haven’t even mentioned I now go to the gym atleast 3 times a week, have lost 17kg since Feb 2012 and am probably in the best shape I have ever been! I lift weights, I can run/jog if I want to. I do a lot more than I did before. I am slowly learning how to deal with the depression, fatigue, cognitive issues and sensory issues that are still there – particularly if I overdo life and forget I still have MS and need to pace & rest.
CCSVI is not a cure, it is a treatment that I believe gives PWms a relief from some of our pain and symptoms and I am guessing it is also slowing down progression.
The Procedure doesn’t come without pain. It isn’t comfortable and it does hurt a little bit. You do feel sore in the neck for a little bit afterwards which lasted a few weeks for me. It is also expensive. It is money well spent but really, does something that can keep us active and functioning as well as it does have to cost so much? It is out of reach for so many yet could have these people back in the workforce and kicking goals after 6 weeks.
SUPPORT CCSVI RESEARCH!!
CCSVI DESERVES ATTENTION!!
ALL PEOPLE WITH MS DESERVE ACCESS TO THIS CHOICE OF THERAPY
NOT TO FEEL LIKE CRIMINALS FOR GOING AHEAD WITH IT!!
Thank you CCSVI Australia for giving me and countless others HOPE!
If you have a testimonial you would like to share please email us at firstname.lastname@example.org with your story and photo.