"From Arlene Hubbard about her son Devin's restenosis. Please read and thanks for being so honest with us Arlene~ ",  Nicki Beagle-Watts

  7/13/11   Devin has requested that in the spirit of full disclosure I share with you that after 14months, symptom free he has restenosed and had a recurrence of symptoms he had in 12/09.  It seems to have occurred acutely after having been yelled at by someone. Stress has been the instigating feature in each one of Devin’s attacks.  He had a short course of oral steroids.  I know many of you have posted that taking oral steroids without the more standard infusions was not the best treatment. We conferred with Dr Burks and oral meds alone are now considered to be a viable option. We did an MRI and there were no new lesions in his spine or brain.  He was retreated by the wonderful, compassionate Dr Donald Ponec on 7/7/11. Devin’s numbness has not abated and we are very disappointed. We do believe that the stress caused this most recent symptom and we are hopeful it will clear soon. He will continue with his gluten/dairy free diet and supplements. We will be arranging for an evaluation with a naturopathic MD. So what’s the message?     1.Venoplasty is a wonderful treatment for CCSVI but a one time procedure is not the answer for everyone. We are continuing to learn everyday but there is a long way to go.  Hopefully, more people will get involved with research so none of our sons, daughters, spouses, siblings, friends have to endure a life with this debilitating disease.   2. Have a plan. We knew what we were going to do if Devin Restenosed. This situation would have been 10 times more difficult if in addition to feeling  fearful, we did not know what to do next. Perhaps there was more we could have planned for but we will figure this out going forward.   It was Devin who asked David and I to help get other people with MS tested and treated while he was being wheeled out of the OR on 5/6/10. Since that time he  has worked tirelessly  to accommodate those MSers who call us.. He has spent time talking with them and providing them with lots of information and heartfelt support. Because stress clearly played a role in each of his attacks Alexandra and I will be taking over his communications while he spends more time on the day to day operations of our AFI facility. Devin has MS and I hope others with MS will understand that we all need support, including Devin and none of us deserve or should accept any less than respect. We believe Devin will reap more rewards from this most recent venoplasty very soon. We want our son  and everyone with MS to live joyful, healthy lives. This is why we continue to be committed to the research.     

By: Arlene Pellar Hubbard

http://www.facebook.com/notes/arlene-pellar-hubbard/recurrence-of-symptoms/201656483216321