All Posts by bailey

Danielle’s Post CCSVI Update!

 

Wow, it is hard to believe that it has almost been 2 months since WAMS and their donors enabled me to seek the CCSVI procedure south of the border. I remember the happiness of hearing the news earlier this spring that WAMS was willing to name me as one of their foundation’s 2012 recipients. For that news I would like to thank them and every one of the people who so selflessly donated to support myself and WAMS on my journey. I actually did not believe that this procedure would ever become a reality for me until many years down the road when I would be re-trained to begin working again and be able to save up the money myself.

Looking back these past months the feeling of just how surreal this experience has been has not left me. One of the first times that I think I accepted that this was happening for me was when I was actually on the operating table and part way through my procedure. Dr. Arata, who was performing the procedure. asked if I could feel different sensations. I could feel something in my left jugular, which was Dr. Arata ballooning my vein. The feeling is something I can only describe as like having really plugged ears, except the pressure was in my neck. That is when it hit me. I was having my CCSVI treatment.

I began noticing changes that same evening. The first thing I realized was that my feet actually felt like my feet. Gone was the sensation that my feet were full of water logged cotton balls that were connected to electricity. I had not expected that one, but wow that was a good start! Waking up the next morning I was able to walk better than I have been able to in years. Since I can now feel my feet my balance has also improved. I am still able to surprise my friend who accompanied me, at the improvements I continue to make.

My pain is also not as debilitating as it was before my procedure. Although not completely gone. my pain now averages between a 3 and a 6 on a 1-10 scale on any given day. As such I have been able to lower my pain medications as well. The clarity in my brain is amazing. It is rather exciting to recognize that I am thinking clearer again and I am able to sleep the night through thanks to the reduction in my pain and the overall feeling of wellness I now live with. The improvements might sound small to some but to me they are huge. I have also been told that I can expect improvements in the coming months once I am back in my regular routine. I have actually been away a lot these past few weeks. OH, a big one. I was actually able to dance at my friend’s wedding a month ago. This is great because I could not do the same thing a year earlier at another friend’s wedding. The fact that I could do that made this whole adventure worth it in my eyes and I would do the same thing again down the road if I need the relief.

Again I would like to thank you and WAMS for everything that you have done for me. I feel as though I am reclaiming my life again with your help. I start my 4th year of my degree program tomorrow. I just hope that I am able to someday help another person as much as you all have helped me. Thank you so much 😀

Morgan’s Update

 

Hello, my name is Morgan Nahanee and I was one of the beneficiaries of this year’s WAMS fundraiser. I want to start by thanking everyone who attended or donated in any fashion. I feel so lucky to have found the WAMS foundation, and I am so grateful for all the help and support I have received from them.

I went for CCSVI treatment less than a week after the fundraiser. I had being feeling marginally better pre-surgery due to a steroid treatment recommended by my neurologist. With the support of my family we drove down to Seattle the day before my surgery. We spent some good quality time together and the next morning I made my way to the Vascular Access Center’s Seattle office. All the staff were wonderful and I was treated very well. We met Dr. McGuckin and talked a little about the risks of surgery and then it was time to get prepped for the procedure. The whole experience was really painless and I was only in surgery for about 45 minutes. They found 4 blockages in my azygos vein, my left jugular vein was 50% blocked, my right jugular vein was 70% blocked, and my left iliac vein was 80% blocked.

Having normal blood flow restored was a great feeling, as soon as I regained consciousness after surgery I started feeling better. I’ve been asked a lot recently about what has changed and I’m still having a hard time finding the right words to describe my experience.

I feel good.

I had nerve pain that was ranging from 8-10 out of 10, and that is gone. I feel as though a haze has been cleared from my mind and I can think clearly again. I want to say I’m feeling more energized but I think it’s the cognitive-fog lifting that has left me feeling more alert and less fatigued. My stamina is back and I’m feeling more like myself. I’ve also had a feeling of constant pressure and tension in my neck, and that is also gone. I’m not ‘cured’ or even 100% recovered from my latest MS relapse but my life has started to return to normal. I took my son on two outings today and played with him for hours! It was so wonderful to be able to pick him up and hug him and chase after him in the playground. It may sound cliché but honestly it’s those moments that are so priceless for me as a mother with MS. I’m planning on renewing my gym membership and using this opportunity to get my health back. I’m hoping that by building up my strength and getting my gluten free diet tuned up, as well as taking the right supplements that I can extend this ‘remission’ for as long as possible.

Again my sincerest thanks for your contributions that have allowed me to get my life back.