CCSVI Success

Christopher Alkenbrack is an impressive person and he took part in a controversial treatment, CCSVI. Christopher sees people with MS as an adaptable group. This has been one of his life-long lessons, always modifying the environment to fit his physical limitations.

I’m grateful he is willing to share his story.

“On May 18, 2010 I can say that I set my disease clock back in time by 5-7 years.
Out of physical necessity, I resigned in 2009 from my volunteer position as Chapter Chair for a local MS group.

Christopher’s story was covered by the news! You can watch it here.

It was only a few months later that I heard of a new hypothesis on the possible origins of MS – CCSVI, or Chronic Cerebrospinal Venous Insufficiency. I spoke to my family doctor, and was referred to a private clinic for testing of the jugular veins. I tested positive for blood-flow problems, and sought treatment overseas where I travelled with my wife and a friend from Montreal who also has MS.

After the CCSVI treatment, I no longer suffered from the fatigue that ruled my life, from major visual disturbances that affected my ability to drive, from bladder dysfunction, and I regained some strength in weakened limbs. I now walk with one cane, and have since May 2010. Hard work, eating well, physiotherapy and positive attitude goes a long way in healing.

I was born and raised in rural Ontario, Canada. When I was 20 I moved to Montréal, Québec where I completed my studies in French. I was in college working on my Master’s in French Linguistics where I met the woman of my dreams. We went to the same church, but had never really had the chance to “meet”. I attended a concert where Claire sang, it was love at first ‘sound’ upon hearing that lovely mezzo-soprano voice!

In April of 1992 at the age of 24, after 4 months of dating, I suddenly developed strange sensations on my right side. Over the course of a couple of weeks I lost use of my right foot, hand, had difficulty walking coupled with double vision. Days later at the Montreal Neurological Institute I was seen by the director of the MS Clinic. After undergoing a lumbar puncture and an MRI, I was told that I had MS.

Devastated by this news, I informed Claire, and told her she was “free to leave”, as I could not expect her to stay around with a sick guy. She laughed, and said, “You’re not getting away that easily”. We’ll celebrate 19 years of marriage this fall. We have two teen children, Nick 16 and Leah 14. My biggest fear was that of losing Claire because of my diagnosis.

I finished my education the following year and became a teacher. After a few years of teaching I became Vice Principal, and then Principal, first in High School, then in Primary School. I had some problems with my MS over the years, but I kept it to myself until November of 2001 when I started a series of attacks that landed me in and out of the hospital for the next 2 years. I finally had to leave the job that I loved in 2003 when my Relapsing Remitting MS had moved into the Secondary Progressive stage.

I used 2 of the 4 immunomodulatory drugs for a number of years. By 2003 I walked exclusively with a pair of fore-arm crutches, and by 2009 was using a wheelchair for energy management. I tried mitoxantrone treatment (chemotherapy), but after a single dose my cardiac function had slightly decreased. At this stage my neurologist informed me that there were no more treatment options for my form of MS.

When I think of my life before CCSVI treatment and now, I like to summarize my improvements in the words of my 14 year-old daughter. One day just before the school year started we were talking over a cup of hot cocoa, she said, “Dad, do you remember when I was in Kindergarten and you were sick and in the hospital all of the time? Mom used to let me take half days off school, and I would stay at the hospital and be your ‘little nurse’. Now that you’ve had treatment for CCSVI and are doing better, I don’t have to be your little nurse as much anymore.”

Though the treatment doesn’t work the same for everyone, it has already allowed me to gain back 10 months of better quality of life that MS stole from me. With my dedicated wife and my beautiful children, I celebrate my new-found life every day. Unfortunately I still live with the constant awareness that MS has its hold on me!”

I thank Christopher for being willing to share his story. Here is one example of the CCSVI treatment that has honestly helped.

I know there are many out there who don’t agree with this treatment, it truly has the MS community in an uproar. What do you think after reading Christopher’s story? Tell me in the comments below.

18 Comments:

  1. What an incredible story! This has give me awareness of strength and determination.
    Donna Merrill

    P.S. I know Dena-Lynn well and am happy to see you both working together and doing a great service.

    • Donna~
      Thank you for visiting our blog! Christopher is a wonderful, inspirational man!
      Yes, Dena is an awsome woman! It’s great to work together! She would deny it but she is a great help with the techie stuff!
      Linda

  2. I don’t know whether to agree with this treatment or not, but I do believe Christopher not only has the right to try it, but he is paving the way for others to follow if they believe the treatment could help them.

    If I were sick I’m sure I’d want access to anything that I thought would help me. Christopher is a brave pioneer.

    • Dave,
      I’m with you there! MS treatments work differently for everyone! Like you, I think that we need to all choose for ourselves!
      Linda

  3. Thank you for sharing your story, Christopher. I applaud your strength and courage. As Linda Grace’s mother, I have made the MS journey with her and I know the frustration and heartache this disease can cause. But there is also joy involved in overcoming the obstacles and living a fulfilling life, as you so eloquently describe. My prayers are with you and all of the MS community.

    • Thanks Mom for visiting and commenting! My prayer is that everyone will have a supportive family like you are to me!
      Linda

  4. I was diagnosed with MS in 1990. There has never been a treatment available for me as I became Secondary/Progressive before any disease-modifying drugs were approved and they are only available to those classified as Relapsing/Remitting. I was “doomed” to downward progression. On March 17, 2011 I had venous angioplasty treatment for CCSVI (in the U.S.) and could then stand without holding onto anything and walk several hundred meters without a mobility aid for the first time in over 17 years.

    I have also had many other improvements (no more heat intolerance, none of the headaches I used to get weekly, decreased neurogenic itching, to name a few) that previously were attributed to MS but amazingly have been improved with restored blood flow. This is my before/after video: http://www.youtube.com/watch?v=yrH9GH0N4ck

    • Lori,
      Thank you for sharing! Thank you for putting the link to your move! I’ll watch it and maybe all my questions will be answered but if not, I really would love to hear where you had the testing and surgery.
      Linda

  5. I was treated at Vascular Access Centers in Tukwila, Washington.
    They have been performing vascular procedures for years. They have gotten very busy lately with CCSVI procedures at many locations across the U.S. They don’t bother with Dopplers oor MRV’s because there are too many false negatives. They test with the gold standard–a venogram– and if they find a problem they can immediately perform a venoplasty.

  6. I arrived here from a Facebook link – AN MS LIBERATION TREATMENT FOR CCSVI
    Christopher’s story is yet another step in my search for confirmation that CCSVI is all that my instincts and hope’s are telling me it is.
    So far all the positive stories I am finding are from Canada, it would be nice to find some similar stories here in the UK. Liberation treatment has recently become available in Scotland at the Essential Health Clinic, (www.essentialhealthclinic.com), I am keen to research there success rate and will be doing so once Christmas is out of the way, another gut feeling I have is the treatments success is only as good as the consultant?
    I love Christopher’s daughters little anecdote, thanks for putting your story out the Chris, long may your “better” health last.
    Andy

  7. WOW!! Very good Chris. I would love to give up my disabled sticker. You’re doing well. Keep it up.

  8. I was treated for CCSVI in Albany, New York on
    19 July 2011. Like Christopher, the treatment (fortunately) worked for me. Improvements include much better balance (no more wall walking or bouncing into walls), far less fatigue, far less adverse reaction to temperature changes, warm feet, minimal restless legs, increased energy, improved sleep, and since giving up Rebif (a disease modifying drug) no problems with digestion. The procedure itself is painless and reasonably fast and, if I have to, I will do it again in a minute. The improvements in my quality of life are, for me, extraordinary. I wish everyone in Canada who wants the treatment for CCSVI could have it – we are fighting but it is a long, up hill battle. In the meantime, 400 Canadians with MS die each year from complications or commit suicide. Every year, Canadians with MS deteriorate. The treatment for CCSVI is not a cure for MS and it doesn’t work for everyone but all Canadians with MS have a right to access the treatment if they wish to do so.

  9. Christopher is an important part of a great community of wondrous folks. He is real. He is much loved among us and is a strong natural leader.
    Many thanks to a great human being, husband , father and friend.~

  10. As a sufferer of PPMS and breast cancer who has given up all hope – I am just exstatic that he had the courage and finances to try this proceedure and that it has helped and brought him happiness and peace. There are so many doctors that are unwilling to think outside the box and only resort to the Standard of Care. Well if we are all individuals then the cookie cutter approach just doesn’t work for everyone. Finfing those doctors that are open to other treatment other than drugs or a wait and see attitude are rare. I research continually for 2 yrs for something to help me to no avail. The USA is too far behind and refuse to allow doctors to practice medicine if they aren’t able to make tri;;ions from it. By the time they finally find something to help with my MS I won’t even care any longer – Would leave the country for tratment of I could afford it but there is no chance of that.

  11. Christopher Alkenbrack

    Well, just to follow up, it will soon be 4 years since I underwent this treatment in Poland.

    I have had 2 relapses since this treatment, but both were of short duration. I had to have an adapted vehicle as of July 2013, but still this is a step ahead of where I was before treatment because I had stopped driving.

    I still live aware that I have MS, and the limitations it poses on my daily life, but I am so glad that I had this treatment.

    I am planning to have a 2nd treatment, hopefully this summer. I have been totally MS drug free since I had this treatment, and I believe that I have not progressed significantly. I am now back to the point where I need my two crutches to walk, but hopefully this is temporary.

    I have not used my wheelchair except in a large airport since this treatment. My own family doctor follows me regularly, and has been amazed at how I have fared for the last 4 years.

    I have no regrets…..and have met dozens of Canadians who have had statistically important improvements since their CCSVI treatment. Unfortunately, this has not been the case with all of the people I know…..that it why it is such a personal decision. I weighed the pros and the cons, and moved forward.

    Thanks to Linda and MS Relief for allowing me to share my story.

    • Christopher~
      I thank you for the Update! I have been working on repairing MSrelief.com’s December crash and I was thinking about you, wondering how things are going! It’s fun that you came back and shared and I’m glad to hear the benefits have continued.
      ~Linda

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