Treated for CCSVI almost a YEAR ago! Here's where I stand...
Posted: Fri Sep 10, 2010 6:36 am
The one year mark is quickly approaching for several of us. October 19th, 2009 was the day I had my procedure at Stanford. Two severe blockages were opened with stents in my jugulars. The initial recovery had it's ups and downs, but the results were life changing.
Looking back, I am amazed at the year I have had. I did so many things which were not possible in the six years before. I am not perfect, but I do have enough of my life back to LIVE! I am very grateful!
My most significant improvement is cognitive. I was unable to think or speak clearly before treatment. I was unable to learn or follow directions. I had NO memory. These things are very hard to deal with. I am entirely able to move forward with a sharp mind and clear memory now. This is a good thing when raising two kids!
My fatigue, stamina and balance have also remained strong since treatment. This is huge since I typically spent most days exhausted and dizzy, which kept me in bed more than I'd like to admit.
I no longer tremble and ache when exerting myself. My muscles recover much faster now.
I no longer suffer from anxiety. This could very well be the result of not worrying about the toll MS will take on my everyday life. Whatever the reason, I am comfortable and happy and very outgoing.
I had improvements in my migraines. I do get headaches still, but not the disabling kind I had before.
The numbness was gone for a good seven months, but has begun to creep into my evenings again. The severity is not where it was before, only about a 30% increase.
The only concerning issue for me is a slow, steady increase in leg stiffness and neck/shoulder pain. It was unmanageable prior to treatment even with medication. I am able to manage this with ibuprofen now.
I do wonder why these things have started creeping back into my daily life.
I am hoping Dr. Dake will be able to evaluate my veins, and if anything is narrowed again, fix it next month. My azygos was determined to be fine, but since then we have learned better imaging techniques and nuances, so who knows? I would like to move into my second year with a clear picture of my situation. I am willing to have additional work done if the need arises.
One of the things that stick in my mind regarding this treatment is how many people wanted to see the results of treatment after a year. Well, here we are. It may not be perfect, but it is a whole lot better than before Zamboni published his discovery and got the CCSVI ball rolling. CCSVI/MS is probably a lot more complex than we imagined, but at least we are working towards discovery. Those of us who have undergone treatment are aware of the fact that we are swimming in uncharted waters. It may take time, but eventually the research will provide clear answers. This is a very hopeful time for people with MS.
Thanks to all of the people who answered questions and supported me before my treatment. Most of them are not around any longer and are truly missed. I assume they are out there LIVING!
Looking back, I am amazed at the year I have had. I did so many things which were not possible in the six years before. I am not perfect, but I do have enough of my life back to LIVE! I am very grateful!
My most significant improvement is cognitive. I was unable to think or speak clearly before treatment. I was unable to learn or follow directions. I had NO memory. These things are very hard to deal with. I am entirely able to move forward with a sharp mind and clear memory now. This is a good thing when raising two kids!
My fatigue, stamina and balance have also remained strong since treatment. This is huge since I typically spent most days exhausted and dizzy, which kept me in bed more than I'd like to admit.
I no longer tremble and ache when exerting myself. My muscles recover much faster now.
I no longer suffer from anxiety. This could very well be the result of not worrying about the toll MS will take on my everyday life. Whatever the reason, I am comfortable and happy and very outgoing.
I had improvements in my migraines. I do get headaches still, but not the disabling kind I had before.
The numbness was gone for a good seven months, but has begun to creep into my evenings again. The severity is not where it was before, only about a 30% increase.
The only concerning issue for me is a slow, steady increase in leg stiffness and neck/shoulder pain. It was unmanageable prior to treatment even with medication. I am able to manage this with ibuprofen now.
I do wonder why these things have started creeping back into my daily life.
I am hoping Dr. Dake will be able to evaluate my veins, and if anything is narrowed again, fix it next month. My azygos was determined to be fine, but since then we have learned better imaging techniques and nuances, so who knows? I would like to move into my second year with a clear picture of my situation. I am willing to have additional work done if the need arises.
One of the things that stick in my mind regarding this treatment is how many people wanted to see the results of treatment after a year. Well, here we are. It may not be perfect, but it is a whole lot better than before Zamboni published his discovery and got the CCSVI ball rolling. CCSVI/MS is probably a lot more complex than we imagined, but at least we are working towards discovery. Those of us who have undergone treatment are aware of the fact that we are swimming in uncharted waters. It may take time, but eventually the research will provide clear answers. This is a very hopeful time for people with MS.
Thanks to all of the people who answered questions and supported me before my treatment. Most of them are not around any longer and are truly missed. I assume they are out there LIVING!