Friday, September 2, 2011

One-year update from Dianne

Here is an update sent me by my liberated friend Dianne:
Hi Ted, it has been one year for me since CCSVI angioplasty (aka. MS Liberation Treatment) in Sophia, Bulgaria.  I have been fortunate in that the gains that I made post-angioplasty have only improved over time.  The relief that I got with respect to the vascular issues of MS such as bladder control, fatigue, numbness, choking and swallowing, brain fog, balance, heat tolerance, and all the other nasty symptoms of MS has remained and I consider myself (almost) a normal person in those regards.  I do not take any MS medication but do take vitamins and try to eat as much healthy food as possible.  The vascular issues corrected with the CCSVI angioplasty worked for me and have remained.  If you remember I had 70% blockage left IJV (2 stenosis), 70% right IJV (1 stenosis), and 70% blockage in the Azygos (with 2 stenosis).  I did not have any stents.  I had no complications of any kind resulting from the procedure.
We went to Dr. Sandy MacDonald’s Clinic in Barrie in November for a follow-up Doppler after 3 months.  They saw normal blood flow in both the IJV’s and the VV’s, with normal collapse of the VV’s inferring normalcy in the Azygos.  Great news!  This July we went to the Eastern Maine Vascular Center in Bangor for a one year Doppler follow-up.  Again my veins were normal with full flow and no reflux. More great news!!  Intuitively, we knew that before we went by the way I was feeling….normal!
Now, the neurological issues that I have with mobility have been a struggle.  I am still using the hiking poles outside but the dependency is slightly decreasing as time goes on.  I just feel more comfortable walking with them by my side.  Walking is still a chore if I am out for a while and I get stiff if I stand in one place too long.  I went for physio over the winter primarily for strengthening of my legs and that went well.  Walking normally definitely is my biggest challenge.  
I am doing PNF training (proprioceptive neuromuscular facilitation) for both my left hand and right foot.  This is under the direction of a neuro-physiotherapist who I still continue to see.  This is a type of physical therapy procedure mostly used by stroke patients to re-train their brain.  (  Since I know that the MS lesions in my brain are still there, I am working at re-training my brain to bypass these problem areas.  I know that this is working as the little finger on my left hand has now re-joined the others on that problematic hand.  Before it would wander away from the rest and not participate in the functions of that hand.  My left hand is now normal!  My right foot still needs to improve.  I am not certain exactly where it is without looking down.  That’s the proprioceptive part that I am working on.  It looks, feels and works (almost) normally but again where it is in relation to my other foot is still not normal (yet).
I have an adult tricycle that I drive around the neighbourhood (still haven’t gone on the city trails yet) and do just fine.  I generally go about 1 to 1½ kilometre several times a week.  I have been reading again using an iPad2 and really enjoy that.  (I had stopped reading years ago as wrestling with a book was just too much.)
I have a new doctor of physical medicine (physiatrist) after firing the last one.  He is very supportive and essentially has told me to continue the rehab regime that I am on to continue to improve.  I have not seen (or even heard from) my neurologist since she found out that I went for CCSVI angioplasty (even after repeated phone calls and referrals from my family doctor).  My family doctor is very supportive.
To sum this all up, I feel dramatically improved since Bulgaria.  I consider myself to be (almost) normal in many ways.  Mobility is my issue and I am working every day to make myself stronger, more steady on my feet, and confident especially outdoors on grass and other uneven ground.  I feel good and my life has been given back to me.  I pray that this all stays and that I can participate in my grandchildren’s lives (the first one is on the way!) like a normal Grammy can!
Best regards and good health to all, Dianne.

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