MS patient describes life after Liberation Treatment
CTV.ca News Staff
Published Monday, April 12, 2010 11:10AM EDT
W5's recent follow-up story on an intriguing new multiple sclerosis treatment developed by Dr. Paolo Zamboni led CTV medical specialist Avis Favaro to meet a number or remarkable MS patients who have tried Zamboni's "Liberation Treatment."
One of those patients was Steve Garvie. Garvie had been diagnosed with secondary progressive MS, the most severe type of the disease. After his neurologist told him to wait for more studies on Zamboni's research, Garvie went instead to see vascular surgeon Dr. Sandy McDonald, who runs an imaging clinic in Barrie, Ont.
A scan of Garvie's neck revealed he had abnormal blood drainage from his brain because of a narrowed left jugular vein. Dr. McDonald and his colleagues unblocked the vein with a small balloon in a procedure called a venoplasty. Now, two months later, Garvie provides this account of how the procedure has changed his life:
My name is Steven Garvie and I have secondary progressive M.S. Or is it had it? Before this procedure I endured what many if not all MS patients endure: the toxic cocktail of fatigue and depression. Suicide seems the only solution to weighing down your friends and family and feeling useless and poorly all the time.
Prior to the procedure, I was living in assisted housing, being taken care of by a government-funded agency called Simcoe County Association for the Physically Disabled. These are professionals that care for people who need physical assistance. They came in to my apartment three times a day. First, they came in the morning to help me with breakfast, make my bed and get me on my way to work. They would come back later around 4 p.m. when my fatigue had set in and make my supper because I was incapable of performing this daily task. They would return again at 6:30 p.m. to help me shower. They would wash me, help me in and out of the tub and make sure I did not fall, as I surely would have without them.
I cannot tell you how much I appreciated their help, it was invaluable. It allowed me to go to work and support myself to a very large degree. Without them it would have been impossible.
After the procedure, I changed my care schedule. They would come in once a week to clean my apartment, assist me with shopping, come in every day and spot me while I showered (and washed myself) to make sure I did not fall. This was for the first three weeks after the procedure because I was still very uncertain about my own capabilities.
Since that point, I have requested a two- month period with no care. I am still uncertain of whether my vein will close again and their assistance would be needed once again. They have been intelligent and understanding of the newness of this procedure and its outcome, and have given me leeway with agency policies. I cannot thank them enough for their flexibility.
I have now started physio in hope of redeeming some of the leg and foot motion I recaptured. My gait is getting stronger and I walk with a cane, not a walker, most of the time. The wheelchair is getting lonely and cobwebby. I think in a couple months I will give it to someone who needs it.
Since the procedure, the debilitating fatigue is gone, my left hand works again. I have cut in half the number of drugs I am taking. I am walking better every week. The physio is not an easy thing; it causes pain in muscles that haven't been used in a long time in both legs. I suppose that is the price of waking up sleeping muscles and reconnecting brain and muscles. I find that the mental concentration it takes is more tiring than the physical demands of the therapy.
I have kept charts of the improvements regarding balance, fatigue, my left hand capabilities, and my left leg/foot with walking. They showed marked improvements for the first several weeks' then very slow progress up to this point. My physiotherapist is also charting all of my exercises and my progress. I hope the physio reawakens and reconnects muscle and brain to give me back what I can get.
There are things that I will never retrieve. However, since stopping the progression was my deepest desire before the procedure, I have been truly blessed. I know I have a very hard battle yet to win, however, without fatigue and with this gift I was given by the surgeons, I will persevere and prevail. I did not plan on a future, for I could not envision one. I now have a new lease on life and wait impatiently for others with MS to join me.
I would however like to add 2 points from the latest W5 broadcast. The first point is that all five liberated patients have lost the debilitating fatigue and have gained energy. The second point is that if you watched W5, you heard each and every liberated person talk of their progress, instead of the progression of their MS. I think it wonderful that liberation has given us all back something, and at this point, has stopped stealing more of our capabilities from us. Time will tell whether progression has been stopped and I wish that some intelligent doctor would take up the gauntlet to study this important factor.
In closing, I would like to suggest that neurologists help us reconnect our muscles and minds and leave CCSVI (MS), to the field with expertise in such things: the vascular surgeons.