What I did on my summer vacation

Hi all,

I am back with stories that are finally worth reading.  I have had an incredibly busy, frustrating, and exciting July.  I can't believe it has only been a month since I signed off for a much needed break.  So much has happened, I feel like I need to divide it into parts.

Part I:

First, the yucky stuff.  In the beginning of July my already poor balance and walking got even worse.  I blamed it on the still-untreated azygos vein, and decided to pursue a fix even more aggressively than I had been already.

Then I got an odd sensation of something like clay being molded to the underside of my toes.  Then I got a wicked MS hug around my rib cage.  For those of you without MS, this hug feels like someone is tightening a weight lifters belt around your ribs.  It makes it difficult to breathe, and for me causes great anxiety.  I guess anyone would feel anxious if they felt like they couldn't take a deep breath!

It was the combination of the walking, balance, and the sensory symptoms that made me realize that I was having an exacerbation.  Duh!  I haven't had one in well over a year, so it was not the first explanation that crossed my mind when my balance and walking took a steep and sudden downturn.  It was only when the sensory stuff began that I put the pieces together.

I bit the bullet and did a three day course of IV steroids.  They helped tremendously.  While I was on them my balance and walking improved dramatically.  The sensory symptoms got better, too.  Once I stopped the steroids, the walking and balance got a little worse, but remain much better than during the flair.  Sensory has improved, too.

I hate to love those damn 'roids.

Part II:

I had the pleasure of attending a symposium on CCSVI in Brooklyn, NY on July 26th.  The auditorium was filled with Interventional Radiologists, a few neurologists, a vascular surgeon or two, and about 30+ CCSVI patients who also have MS-like symptoms.  How's that for diagnostic manipulation?

What an amazing event!!  Morning speakers included Dr. Fabrizio Salvi, a neuro from Italy who works with Dr. Zamboni, and Dr. David Hubbard, another neuro who uses functional MRI to document vascular changes in MS brains compared to control subjects.  He also is working directly with another presenter, Dr. Mark Haacke who is studying the iron deposits in MS brains.  They all had fascinating information to share.  Both neuros commented about their frustration with their colleagues' resistance to learning about CCSVI and it's very real relationship to MS.  Here is a summary of the event in Dr. Hubbard's words.  His opening statement was, "I'm a neurologist and for the first time am a bit embarrassed about it."

My friend Michelle wrapped up the morning with a fine introduction to an organization which she had a huge part in founding, the CCSVI Alliance.  This is a nonprofit organization dedicated to educating patients, caregivers, and doctors about all things CCSVI.  I am proud to be a member of it's Patient Advisory Board.  It is an invaluable resource and can be found at http://www.ccsvi.org/.  Check it out!

During the lunch break I had the opportunity to hang out with many of my Alliance friends, who, up to that day I had only known online, by phone, or through email.  Face to face contact is a wonderful thing.  In this hyper-electronic world in which we live, there is still nothing like sitting across the table and having a live conversation with another human being.

I also got to meet many doctors, and other CCSVI patients.  Several docs from the DC area were in attendance.  One doc whom I personally invited to attend told me that as a result of meeting me and attending the conference, he is even more determined to do a study on CCSVI!  He is affiliated with two outstanding medical institutions.  I will share more about him and his work as he gets closer to starting.

The afternoon session was dedicated to several doctors who have each performed close to, or over 100 procedures each.  First up was Dr. Tariq Sinan from Kuwait.  His country has committed to treating all 6000 of it's MS patients who wish to be treated.  He also spends one week a month in Egypt treating international patients.  His country does not allow the use of stents, so he has devised some fascinating techniques to manage stuck valves, stubborn stenoses, and other challenging issues.  Our wonderful host, Dr. Salvatore Sclafani noted that the limitations that his government has imposed actually gives us a very valuable glimpse of what can be done without stenting.  Sclafani is very wary of stenting veins at this point.

There were two highlights of Dr. Sinan's presentation for me.  First, he explained that due to the difficulty in finding problems in the azygos vein, he routinely balloons every one on them.  He basically uses the balloon as a diagnostic tool.  When the balloon inflates, it allows him to see problems where the balloon is crimped.  I thought that was fascinating because, as you may recall, my azygos showed reflux but Dr. Neville was unable to find a cause for it.  I am sure that if he had used Dr. Sinan's technique, I might be feeling very different than I do today.

There is no blame or malice in my previous statement.  I was Dr. Neville's first CCSVI case.  As all of the doctors at the conference agreed, nothing in their past experience adequately prepared them for the challenges they are finding in us.  What wonderfully humble men they are for being able to admit that.  And how instructive it is for all potential patients.  Experience really does matter.  Just because a doctor is an IR specialist does not automatically qualify him or her to dive right in to your jugulars and azygos veins.

The second fascinating part of Dr. Sinan's presentation was his introduction of one of his American patients, a woman named Kathleen.  I had seen her during the lunch break, and wondered, "Who is this well dressed woman in some hot high heels hanging out with Dr. Sinan?  Perhaps she is his assistant?"

No, sir, she is one of us!  She climbed the four stairs to the stage on those heels without need of a railing and proceeded to share her story.  She explained how she had had to quit her job as a college professor due to severe cognitive problems, and told of her sadness of having to trade in her heels for "sensible" shoes and canes (one or two depending on the day.)  She was treated in May by Dr. Sinan in Egypt and had a dramatic improvement in most or all of her symptoms.  Wow.

The final two speakers were Dr. Ivor Petrov of Bulgaria and Dr. Gary Siskin of Albany, NY.  They both use stents when they feel it is necessary, but it is not done routinely.  Dr. Siskin noted how important it is to set patients' expectations correctly.  He stated that in his experience so far, about 1/3 of his patients have dramatic improvements, 1/3 have modest improvements, and 1/3 show no improvements.  Sobering stats perhaps, but in comparison to the drugs currently used to treat MS, 66% improvement is phenomenal!

The best the drugs can claim is to slow the progression of the disease by about 33%.  With CCSVI treatment we're talking improvement of symptoms by fixing problem veins.   As time goes by and techniques improve we will see if treatment stops progression all together in some patients.

The four hour drive home from New York flew by.  I left there with such optimism and confidence in the fine doctors who were in attendance.  They have become passionate believers in the potential of CCSVI to answer many questions about the possible cause of MS, and how best to treat the congenital venous abnormalities that they are finding. 

I happen to have a supportive neurologist, for which I am very grateful.  But for those of you who don't, please be assured that an entirely new type of specialist is learning about us and taking a real interest in learning how to fix our problems.  Once these doctors doing studies begin publishing their findings, the neuros will have no choice but to listen.

Part III:

Liberation Treatment take Two!

On Friday, July 30th I had my second venoplasty.  I found a new doctor with CCSVI experience, great compassion, and who also attended the conference in NY.  We met for the first time a few weeks ago.  I was impressed with him during our meeting, and grabbed his next available treatment appointment.  I was the first person he treated who has already had the procedure once.

Because he is dealing right now with a new department chairman unfamiliar with CCSVI, he has asked that I not use his name.  I will call him Dr. X for now. 

Well for starters I love Dr. X.  He was so generous with his time with my husband and me both before and after the procedure on Friday.  We spent much time pre-procedure discussing stents.  I know of many people who are doing spectacularly well with them.  I also know of a few who, a year later, are having great difficulties with their stents. 

Because this really is a low risk procedure which I have proven I can have repeated, my husband and I felt strongly that I would forgo stents at this time. If Dr. X found something very compelling during the procedure, I told him that I would listen to his rationale, then make a decision.  He was so respectful of my desires, and I truly felt heard by this man.  That can't be said for all doctors with whom I have interacted!

Dr. X does not use sedation which was different than my experience at Georgetown.  I was happy to be sharp during the procedure this time.  He also had a monitor placed directly next to my head so I could watch the whole thing.  Unbelievable!!!!!  He doesn't have to do this.  I think it speaks to the kind of awesome man that he is that he does this for his patients.  He talked through the whole procedure for the benefit of his Fellow who was assisting him, and for me, too!  He even came around during breaks in the action to point things out to me on the screen.  How great is that?

So how'd it go?  I know that's the burning question of the day.  Well.  Dr. X found that I had significantly restenosed in both internal jugular veins at the exact spot where I had been ballooned five months ago.  The spots are right around the clavical where the jugulars meet the subclavian veins.

He used slightly bigger balloons than were used the first time.  It actually hurt on the right side when he inflated the balloon a couple of times.  The team was quick to offer me pain medication, but I knew that the pain would stop the minute the balloon was deflated, so I just practiced deep, calm breathing and rode it out.

He told me that he would have stented my left jugular if I was someone who was willing to do that.  I felt comfortable sticking to my plan, although it did give me a little pause.

Now about that azygos.  The vein that I blamed for all of my walking and balance problems.  It looked fine.  WHAT?!?  How could that be?  I laid on the table wanting to cry.  This was not following my carefully planned script.  Damn.

But wait.  He decided to balloon it anyway.  Would he have done that before hearing Dr. Sinan describe how he balloons every azygos at the symposium on Monday?  Maybe.  I didn't ask.  I was just so thrilled that he was willing to do it.

He ballooned it in three places:  the arch, and each side of the arch.  Then he even gently pulled the balloon through the whole area to see if it might catch on something.  Fascinating.  This experience did not hurt, but it was uncomfortable.  Especially when he was ballooning the arch, I felt that it was pressing on my trachea.  I felt the need to cough, and would have killed for a sip of water!  I was allowed to cough at some point, but I survived without the water.

The whole thing took about 1.5 hours.  I laid still while the Fellow put pressure on the femoral vein, then they lifted me back on my bed and after about 20 minutes I was off to the recovery room for another 1.5 hours on my back so the opening could clot.

TMI warning for the faint of heart:

After my prescribed flat time I was ready for the bathroom!  Who in the world can pee laying down? Not me I am sad to say.  I gently sat on the edge of the bed and with a nurse on one side, and my strong husband on the other I began the walk to the wonderful bathroom.  I made it about 5 steps before I felt something warm running down my leg.  Huh?  Uh oh!  It was blood and the place flew into action.  Evidently, I had not clotted enough.  They got me horizontal, applied pressure, and started the whole count all over again.  TWO MORE HOURS ON MY BACK.  And I didn't even get to go!  Oy.

I am happy to say that I survived.  I still cannot pee laying down, and I am amazed at just how much one little bladder can hold!

Come back now all you wimps!

Because of scheduling errors my 1:00 appointment (arrival at 12:00) didn't actually begin until 4:10.  Due to the above mentioned fiasco we did not leave the hospital until 10:30 at night.  And I hadn't eaten since 7:30 that morning!  It was a VERY long day.  I scarfed down two yummy chocolate chip cookies for dinner, and we were finally out of there.

So how am I feeling just under 48 hours afterwards?  In a word: Great!  I had so many benefits from the first procedure, the results have been less dramatic, but no less wonderful the second time around.

1. My feet are still pink, although they are warmer than they were before.  They had slowly gotten colder over these last 5 months I now realize in hindsight.

2.  My swallowing is back to excellent.  It improved dramatically post procedure #1.  It has gotten noticeably worse over the past month, although it still never got close to as bad as before #1.

3.  Cognitive never really declined as far as my husband and I can tell.  I continue to enjoy clear thinking.

4.  Fatigue did get worse over these months.  Never near the levels before treatment #1, but I still faded earlier in the evenings than just after the first treatment.  I was up watching movies with my man until after 11:00 the past two nights.  That's solid evidence I'd say.

5.  I can get out of a chair very easily!  Over these months I have begun to struggle mightily to push up or grab onto something to haul myself to standing.

6.  My balance is significantly better.  My legs are still very weak, but I can walk without the cane in the house with increasingly greater confidence.

7.  I can lift my legs higher.  When I got into bed last night I laid down with my feet on the ground and lifted them one at a time high off the floor and rested them on the bed.  Three days ago I had to drag them onto the bed with my hands.

8.  I walked up and down a flight of stairs today.  Because of the weak legs it is still not pretty, but coming up is much easier now that I can lift my legs more easily. 

I plan on making PT appointments tomorrow to start strengthening these legs.  I can't wait!

Dr. X is not at all convinced of Dr. Tornatore's and my theory of the azygos' role in walking and balance.  He told me that he would bet his house that I began restenosing 2-3 weeks after the first procedure when I began to lose my balance and walking gains.

Based on the fact that there was nothing terribly wrong in my azygos, and that after reopening my jugulars I am already walking better, I am inclined to believe him.  Plus, his house is way too far from mine for me to really want to win that bet!

I'll be back with more news very soon!