Repair, recover, rebuild

Now that I have been successfully venoplastied- again, it is time to rehab- again.  This is not a complaint! I am grateful for the opportunity to to rebuild what was lost.  It feels awesome to work my muscles until they burn.  Pre-liberation I could only exercise as long as my nerves were willing to send signals to my muscles.  No amount of motivation on my part could convince my muscles to do one more rep than my nerves would allow.  And then I was faced with hours of recovery time for the 10 to 15 minutes of, what was for me, great exertion.

Post-liberation I can push these muscles to work harder than they remembered that they could.  My positive attitude now really can push my legs to do just one more squat if I tell them to!  The tail is no longer wagging this dog.  I am in charge once more!  I say how long I will pedal the bike, or how many leg presses I will do. There is little to no recovery time necessary now.   My nerves are at the mercy of Nicole, not the other way around.  I love bossing my body around.  It is intoxicating!  

I look forward to seeing just how much I can rebuild my body in the coming year.  Twenty years of neurological damage cannot magically be fixed by simply opening my veins.  I will do everything in my power to regain as much strength and functioning as humanly possible, and hope doctors figure out how to help me maintain my gains.  

Eventually my goal will be exploring ways to repair the damage that an overactive immune system has been doing to my nerves for all these years.  That means stem cell therapy, and while I am clearly willing to try new things, that's one that I can wait to let other brave souls try first!  

For now I know that I've got my hands full, but it costs me nothing to peer around the corner to see what's coming next.  It is all so exciting and wonderful!  I couldn't have said that even a year ago.  For the first time in too many years, I am optimistic about what my future might look like.  Not a bad way to begin a fresh, new year!

I hope that the new year will bring Liberation to all who are waiting for their turn.  Nobody guarantees us success, but everybody should have the opportunity to see if he or she is a lucky responder.  

Still wishing you all much health and happiness in 2011!

Nicole

What a wonderful month

It has been far too long since my last post.  Please be assured that I have not lost any interest or enthusiasm in sharing my journey.  This may sound crazy, but I have been reluctant to share my latest news because I feel embarassingly fortunate.  Let me explain.

When I saw Dr. Haskal on October 26th, we determined that I was restenosing.  He told me that he hoped his study would be approved in the next couple of weeks, and that he could retreat me before Thanksgiving.  You see, I had a big family event scheduled for December 11th, and I desperately wanted to be feeling as well as I did after he last treated me in July.

Well, Thanksgiving came and went.  I did steroids the three days before Thanksgiving because his study was still mired in IRB-hell.  I was in touch with Dr. H's wonderful staff on a regular basis, but it wasn't looking good.  Then against all odds I got a call from the doctor himself on Tuesday, November 30th.  He had spoken with the IRB about getting an exemption to retreat me.  I don't know exactly why they agreed to let him treat me, but they did!

He said I should call his scheduler to get in THAT WEEK!  It was actually my husband who took the call.  He called me in the car to tell me the good news and I burst into tears.  I am not a terribly spiritual person, but at that moment I felt sure that my mom had somehow made the stars line up for me.  Thanks, Mom.

So I had my second procedure with Dr. Haskal two days later on December 2nd.  Here are the fascinating details:

Both of my jugulars had restenosed to some degree, and he used bigger balloons to treat them.  I am the first person on whom he has done a second treatment.  In the procedure room, he had my images from July on one screen, and live pics on another!  So cool.  The right jugular looked fine on first inspection.  He then looked at the left side and saw obvious narrowing at the valve where the jugular meets the subclavian.  He ballooned it many times, and this time it hurt enough that I asked for some pain medication.  He gave me a little Fentanyl to take the edge off.  Not sure if I got enough to really help, but I've given birth two times, so what's a little pain for so much gain?


He noted that parts of the left vein behaved as if they were still patent from the last procedure, while others needed some more work.  He went back to the right and inflated the balloon.  He was surprised that although the vein looked wide open, it was not.  We were looking at a 2D image.  While the width looked normal, either the front or back part of the vein had restenosed.  We could tell because as the balloon inflated, the telltale "waist" showed up.  The oval shaped balloon looked more like an 8 than a 0.  He ballooned the heck out if it.  It was interesting to him that the stenosis was not uniform all the way around a particular section.  Parts of the vein had held, while others had narrowed again.  He learned fascinating information that day that he could not have known before.  My veins were teaching school!

He checked and ballooned the azygos, although it was still unremarkable.  Let's face it, you can't go there and NOT balloon it just for good measure.

Then he was done!  I laid flat for another hour and a half, sat up a little, had a turkey sandwich, and we came  home.

So???  Well, as it was with the last two treatments, I immediately had warm light pink feet.  I took it easy on Friday, and started seeing other awesome improvements over the next several days.  I was able to stand for many minutes at a time.  I could march in place with my knees rising and being able to hold them at 90 degrees for over 10 seconds.  Once again my foot drop magically disappeared!  I can now walk so much faster since I don't have to worry that with each step I will land on my face.

The cane that I had become dependent upon in the house again kept getting left all over the place.  I would walk out of a room without it and not realize what I had done.  Only a few days after the procedure, I stopped using a cane in the house entirely.  Crazy!

On the Tuesday that I got the call from Haskal I was at Nordstrom with a friend looking for a dress to wear to our special event.  I drove to the mall, then she pulled my wheelchair out of the back of my car.  I couldn't walk through the store to get to the dress department that day.  Five days after angioplasty I went back by myself, with just a cane, to pick up pants that I had had altered.  I also stopped off in the shoe department to buy some cute flats.  And I continue to get stronger and healthier each day!

The event on December 11th was my oldest daughter's Bat Mitzvah.  For us it was an all day event beginning with pictures at 9:00am.  Her service in the sanctuary of the temple began at 10:30.  Then we had a luncheon for family and friends that lasted until 3:00.  My legs were tired, but I had none of that nasty fatigue.  We came home and rested for a few hours before hosting a second party with a rocking DJ.


The traditional Jewish dance of celebration is called the hora, in which people hold hands and dance around in a circle.  The guests of honor end up being raised on chairs high in the air.  This was the part of her celebration in which I so desperately wanted to participate.  Without my treatment I might not have even been able to stand in the middle of the dance floor with my family.  I would have sat, and clapped, and smiled from ear to ear.  But on that night I held hands with my husband and two beautiful girls and we "danced."  By dance I mean that we held hands and walked in a slow circle together.  Our loved ones danced in a circle around us.  Then our strong friends lifted us each on a chair to the roar of the crowd.

My daughter was the star of the day.  But because of Dr. Haskal I got to dance with her to celebrate.  The significance of that is permanently seared on my brain.  I did it!

My plan was to wait to share this wonderful news for a time when I could also announce that Dr. Haskal's study had been approved.  I have every confidence that it will happen.  I just felt that I couldn't wait any longer to update my status.  So much has happened in the past three weeks!  I begin PT at the end of the month, and  I look forward to rebuilding, again, the muscles that have deteriorated over the past several months.

I hope that the study gets approved very, very soon. Enough IRB foot-dragging already!  Dr. Haskal and his team are ready to hit the ground running when that happens.  While he and so many patients are waiting, many people are finding other doctors who are learning about, and being trained to treat CCSVI.  2011 is going to see an explosion of doctors who are ready and willing to treat us.  The key factor is finding one who is experienced, or who at least has trained with an experienced doctor.


In the meantime Dr. Haskal and his colleagues are working to write protocols for all doctors to follow.  Only with consistency can we hope to standardize this treatment.  Eventually all patients will have the confidence that they are being treated using the best techniques available.

I am no longer naive enough to believe that I have seen my last angioplasty.  The best I can hope for is an even longer run this time than the last.  I also hope that our brilliant, dedicated new group of CCSVI specialists can quickly figure out how to keep our veins patent, and our valves open forever.

In 2010 I have met more wonderful people because of CCSVI, and had more life-altering experiences than I could have ever predicted way back in 2009.  I am physically, mentally, and emotionally stronger as a result.

I am honored to be a member of an elite group of people who began as individual MS patients, and who have morphed into a fierce, passionate, worldwide force.  We are demanding to be heard and liberated from a dangerous health condition called CCSVI.

To all of my family and friends, old and new, I wish you a joyous holiday season and a very, very happy and healthy 2011!