The emotional and personal opinions about CCSVI and it's possibilities have taken up a large space here. The scientific evidence and discussions about the theory have taken a backseat.
Even as a person who has benefitted greatly from correcting my CCSVI, I feel a little sad about the future for all with MS/CCSVI. It can be easy to feel discouraged when reading this board at times. How funny is that for a person who knows first hand how this treatment has changed my life with MS?
It seems a lot of people are looking for a complete reversal of all symptoms. That is very unrealistic, although I understand the desire. Those people with MS who have damage to their CNS may end up living with that damage. Those people with MS who have not suffered too much permanent damage may feel pretty normal after treatment, as I have.
Is that fair...NO WAY. But, this may be the reality at this time.
Maybe we can agree that correcting CCSVI will help certain symptoms such as; fatigue, cog fog, heat intollerance, body temperature regulation, headache, balance, and a few more. These make sense to me because when your brain is starved of oxygen and plaqued with excess iron it cannot function at it's optimal level. When normal bloodflow is restored and the tissue is receiving what it needs, it seems to immediately improve the symptoms listed above. The exact improvement on the mobility issues are harder to pin down it seems. Some have improvement and some don't.
Time and studies are what we have to wait for. During this time I would hope we could be respectful of the process. I understand the desire to throw your hands up, wave the white flag, and surrender to MS, especially when you feel awful and time keeps robbing you of your life and mobility. But, those of us putting ourselves into this research deserve some time and patience. The techniques are not perfected. The ups and downs during this time make sense because we are learning. Just because we don't have concrete answers yet does not mean we should give up. There is something to this theory. It has done more for people with MS than anything else. It is a reason to hope. It is a reason to support each other through the ups and downs.
As for me, it has taken me from my bed and put me back into life. It has enabled me to engage in life again. It has given my body a break from all of the medications I had to take to just get through the day. My children talk about my MS as something in the past. I don't know what the future will bring, but I will live each new day to the fullest now because MS is not stopping me. If there is a complication with my stents, or a reversal of my improvements in the future, I will be fine because this time has been worth it.
The obstacles we face and the patience we must exhibit must not stop us from hoping and continuing this research. This is a very exciting time for those of us with MS.
Last edited by magoo
on Tue Jun 01, 2010 8:49 am, edited 1 time in total.
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.