CCSVI Check-up

Five months ago*, I made my way to Albany, NY for my appointment with Dr. Mehta for my CCSVI check-up. I had a doppler scan first, which took about 25 minutes this time. As I sat in the exam room with my very amusing friend, we wiled away the hour of waiting with lots of laughter.  I was peeking out of the exam room door to see if I could sense an end to the waiting, and at the same time the doctor was turning to come in to the room. I happened to be laughing at the time, and the near collision caught us both by surprise. But to make things worse, my friend (who is a loud laugher) was bent over in a hysterical fit. So, this is how the doctor comes upon us, and let me tell you, those first few moments of the visit were awkward!!

The news was the same as it’s been for over a year. The Doppler showed open internal jugular vein on the right, and closed on the left with ‘adequate’ collateral vein drainage.Bla bla bla….”There is nothing that we can do NOW…come back if you are more symptomatic….you are looking good…see you in a few months”.

Since there is nothing that can be done, I’ve made a concerted effort to do something for my general health for the past months:

1. I have had a couple of therapeutic massages. They weren’t covered by insurance, but I think they should be.                 2. I continue to have chiropractic adjustments about once a month, down from two to four times a month.                         3. I’m being fitted for hand braces next week. After having a very painful nerve conduction study, I was told I have carpal tunnel syndrome in both hands (even though I had surgery on each years ago). I am concerned that I will not be a compliant patient in wearing them.                                                                                                                               4. I continue to eat gluten-, dairy-, corn- and soy-free. I have slip-ups and challenges with this way of eating, but things are getting easier.  The learning curve is not quite so steep.                                                                                          5. I started having acupuncture sessions and it has certainly been a fascinating experience! I hope to write on that topic, as it deserves some praise-singing for its effects and an explanation of how it works. It’s going to be fun explaining something that is so mysterious……….

*Five months away from this blog has seemed like 5 weeks. I have only thought of it now and then, and always with twinges of guilt, but now I’ve decided to make amends and come back to bloom where I’m planted for a little while longer. At least that is my plan.  🙂   Keep fighting to be well!


Looking for an Ember…

Once the morning passes into afternoon, I begin to panic. It’s just a little swell that starts as a flutter and as the half-hours pass, it progresses to a full blown pounding. All the things I haven’t done yet scroll through my mind, and the ever-increasing speed of the spin threatens to topple me from my shaky perch of dailiness. Is it because I don’t work at a paying job? Is it because I’m lazy? No, the anxiety rises up because I refuse to believe that I can’t do everything I want to do in a day. I’m more than old enough to know that doing everything isn’t possible, and yet, I won’t budge from believing it.  My husband has said that my stubbornness in things like this is what  keeps me going, but I’m not so sure it’s working to my advantage anymore.

When life shrouded me with multiple sclerosis, some things did not change. I still want to have fun, keep a clean house, make many different things, read a lot, write some, see new places, help others, love joyfully and laugh loudly. (The list is in random order, although having a clean house was at the top of the list before I added fun, and that is a sad truth that came out without the telling.) But what MS did change was my ability to focus on a task and complete it. Certainly I could never be accused of being a strong finisher of the many projects I started even before MS, but now, I am often afraid to begin anything new. The fear comes from a place I’m trying to uncover: fatigue lies there, of course, and mental cloudiness at times, but is there something else? I’d like it to reveal itself so I can take it on.

There is such empowerment that comes with a completed task, or with a personal victory of some sort. Perhaps it’s taking a solo travel excursion or doing the week’s grocery shopping alone. It could be completing the physical therapy exercises I know I should do, cooking a meal instead of having take-out, or having a heartfelt conversation that is clear, and remembered. The empowerment of these completions is like energy that feeds the furnace of beginning another. I don’t know how it works exactly, but I have felt it.

So, what happens when the things aren’t done and the furnace never gets stoked?  When the day turns to darkness and you fear looking back because all you can see are the things left undone? And, worse still, your laughter wasn’t loud and your love was anything but joyful?   For me, it is exactly when I admit that MS has thrown a bucket on my fire, and I begin the work of rekindling the embers.  Again.

Appointment with my CCSVI doctor in five days!

It’s been about eight months since I’ve made the trip down the road to see the doctor who performed my CCSVI treatment. Next week, I’ll drive to Albany and get a doppler scan of my neck and talk to him about the results. I will be surprised if all is status quo, (because I have been in a not-so-good place for a few months), and I am really hoping for some positive news about vein grafting.

A lot has changed in the CCSVI world since I saw him last, and it has gotten hard for me to keep up with everything.  I also have a lot to tell him about my latest blood tests and will be peppering him with my prepared list of questions. (When the doctor visit is out-of-town it’s even more necessary to focus and make a list!)  God bless Dr. Mehta for putting up with my many, many questions in the past; he will see that I haven’t changed in that area at least.

One of the things I will tell him is that Teva, the company that makes Copaxone, contacted me to get his name and number so they could contact him about my CCSVI treatment.  What is wrong with that???? I can’t even begin. I was on that daily injection for ten years and I stopped it 2 1/2 years ago. When I contacted them to stop calling and sending me drug info, they asked me why I stopped and I happened to mention my treatment. Well, it’s the truth and since I’m not really into all that social filtering stuff, I said it. Someone has to, so why not me?


There is Hope

When I first received my MS diagnosis in April 1998, I was relieved. Relieved that the symptoms I was experiencing were not from a brain tumor; exonerated from the ‘psychosomatic’ label that I imagined people stamped on me. Multiple sclerosis was presented to me as something that wasn’t a bad diagnosis, but I was too naive to ask, “As compared to what?” I was told that lesions in the brain were caused by the disintegration of the covering of the nerves, and this in turn caused symptoms and deficits of varying degrees. Looking back, my presenting issue was a seizure disorder; then came leg weakness, optic neuritis and sudden deafness in one ear. After that, I had other sensory problems, speech malfunctions and pain. From the beginning, always a debilitating fatigue.

 The course of my relapsing-remitting MS was fairly normal, with exacerbations that required IV steroid infusions, prescriptions that treated symptoms and a daily injectable drug that was believed to be a decoy for the destructive forces attacking my nerve cell coverings. I went to seminars and talks, read books, and listened to my doctor. Even with all I knew about the disease, the real truths of my personal MS were unknown. What caused my MS? When would I have another flare up? Could I prevent a flare? Will I progress slowly or quickly? What daily things can I do to help myself? Sometimes I even dared to ask the idiotic question: Could it be something other than MS? Maybe some of these questions have twirled around in your mind, too.

 Not much has changed in the past fourteen years, it seems. Questions still come pouring from my heart. Doctor visits bring the same answer of We just don’t know. The three or four or six months between visits leaves plenty of time for trying to determine how to help myself. There’s also time to ascertain which new problem is from MS or from a side effect of a drug or from something non-MS related. (Like general aging!) It took me a long time to realize that during the interim, it’s up to me to maintain my quality of life and seek ways to improve it.

Then I got the opportunity to attend a medical conference in Orlando, Florida last month. Doctors and researchers from all over the world came to the scientific meeting of the International Society of NeuroVascular Disease. The first day was Patient Day and the program centered around the topics of MS and CCSVI (Chronic CerebroSpinal Venous Insufficiency which basically means there is a problem with the veins draining the brain and spinal cord). I was excited to learn as much as I could and see if I could find someone to answer my questions, old and new.

 The conference was held at the Orlando Hilton. Dr. Robert Zivadinov from Buffalo spoke first and said that genetics, the Epstein-Barr virus and smoking seem to be contributors to MS. While it has yet to be determined if CCSVI is a disease entity, a syndrome or an inflammatory condition, it is known that the prevalence of CCSVI has found to be greater in people with MS. Research is starting to link CCSVI to other diseases like irritable bowel syndrome, Parkinson’s disease, and other neuromuscular disease. A connection has also been made between Crohn’s disease and having an azygous vein abnormality. (The azygous vein drains part of the chest.)

 Then the “Father of CCSVI”, Dr. Paulo Zamboni, of Ferrare, Italy spoke. I was more than thrilled to see and hear him in person! He explained the research he began to help his wife and how he found a high percentage of people with MS also had problems with their veins. His study, trials, and subsequent findings fueled a revolution of sorts in the MS world. [When news of his findings spread, the social networks were set afire with MS patients demanding information and a treatment that they called the “Liberation Treatment” for its purported ability to free people from the bondage of their MS]. Dr. Zamboni stressed the need for ongoing clinical trials and the importance of having the same protocol to diagnose and treat CCSVI patients. One of the most interesting points he made was that dialysis patients whose jugular vein ports become occluded experience increased fatigue much like MS patients. At the end of the day, I had a photo op with him and babbled like an idiot when he asked my name. Totally, embarrassingly starstruck.

 Dr. E. Mark Haacke spoke of the importance of studying the blood flow, blood volume and iron content of the brain as well as the volume of the cerebrospinal fluid. Now there are imaging techniques that do all of this and more!. MRI is available in 3D; other imaging like Magnetic Resonance Flow Quantification can determine how the blood flows through the brain (and in which direction) and also studies how the blood crosses through the blood-brain barrier. Amazing stuff –and to think that all of it can be used to help us!

 Dr. Bill Code, an anesthesiologist from Canada, spoke about some of the signs of CCSVI caused by too little blood flowing through/out of the brain: fatigue, headache, foggy mind, balance issues, spasticity and sleep disturbances. He discussed the problems of having low blood pressure and ‘thick blood’ and said that if you are found to have CCSVI you are at higher risk for stroke. Dr. Code’s talk was insightful because he has MS and CCSVI which was treated with angioplasty. He was candid in divulging that even though many of his symptoms abated after the angioplasty, some were starting to return after eight months.

 Dr. David Williams, a dentist from Canada, reported some surprising connections between cranial dysfunction and disease. He said that people with MS have been found to have more movement in their skull bones! Some problems associated with MS, such as trigeminal neuralgia and headaches, could result from misalignment of the jaw, teeth clenching or those moving skull bones. He explained that when you sleep, the dominant veins to drain blood from your brain are your internal jugular veins. If you clench your teeth when you sleep, the tremendous amount of pressure exerted can impact the vascular system negatively. Dr. Williams also spoke of the importance of Vitamin D, and talked about the finding of spirochete bacteria in gum disease which was an indication of allergy to metals.

 I listened carefully to all the other speakers and took notes until my brain began to overflow! I got to talk with several of the presenting doctors between sessions and asked many questions, and often their responses were I just don’t know. But because I had watched them and heard their hearts for the whole day, I wasn’t frustrated or saddened by their response. My heart perceived a glow of hope rising off of them; these brilliant men and women are working to find the answers to their questions, and my questions and millions more besides. They believe the answers will come, and come soon, and I can rest in that.

CCSVI: The Saga Continues…

When Dr. Mehta of the Vascular Pavilion in Albany, NY first told me that he and I were going to friends for a long time, I realized he was losing sight of my mission statement: Find out what’s wrong with me, fix it, and let me live my life. Without you.

I went back to see him for a venogram and venoplasty in late September. The plan was to balloon whatever needed opening, and to put in stent(s) where needed.  My speech issues had resolved, but I just wasn’t feeling well– in the MS way, I mean. I was irritable and cranky, and could not snap myself out of it.  The wait in the holding area was long and not eating for 15 hours did not improve my mood.  When I was in the holding area, I was asked to sign the consent form and met with the doctor. He asked for my consent for an extra component* to the procedure, just in case an obstruction made it necessary to visualize the vessels from the brain flowing down. This extra step*, I was told, had a risk of stroke, and the numbers, which I can’t remember right now, were way too high for me, so I declined. The doctor was fine with that (and it turned out to be a moot point later) but it was obvious even to him that my demeanor was, less than stellar. You know when you become aware of being as miserable to yourself as you are to others? That’s what I felt right then, and I didn’t care a bit.

So, the venogram was done, and for the first time I experienced heart palpitations during the procedure. They say it’s from the catheter ‘tickling my heart’.  It was scary and freaky! [I was later told that patients who enter the procedure room with a cranky outlook have a higher incidence of heart flutters. I wonder if that’s really been studied or if it was a dig to my less-than-stellar attitude that day??]  Recovery was uneventful and after about an hour I could sit up, drink and, finally, eat. (15 hours of not eating was unpleasant!)

When the doctor came in, I got the good news/bad news routine. The good: my right internal jugular vein was open and flowing well. The bad: my left IJ vein was closed down. Reopening was attempted but impossible;  stent placement was therefore not possible, either. (I imagined it was like a straw stuck together with a wad of bubble gum. Try to get a smaller straw through that?) There were still  collateral veins open around the blockage, but the flow was not optimal.  The only thing to do–a vein graft.  [I hate to admit it, but I was told that I have one of the worst problem left IJ vein’s he’s seen.]

Vein grafting in the neck is not a common practice, and is mostly done, from what I understand, in patients with neck cancer. And well, for treatment of this ‘new’ CCSVI, it’s virtually unheard of.       [I did hear of one man who had it done at Mayo Clinic a few months ago.]  That said,vein grafting obviously needs to be researched and approved studies need to be done, and that’s where Dr. Mehta is right about now.  And I guess I’m there with him, too.  You know, because we’re friends.

*this extra step is sometimes done when a patient’s veins have restenosed and can’t be assessed by the usual dye flow. It is not, to my knowledge, done during the first venoplasty.

More Than a Medal

Some of you will have seen this in the MS Resources of CNY Newsletter, but I want to make it part of my blog as well:

More Than a Medal

It’s the middle of October and I still have a summer tan– an honest-to-goodness tan. It’s unusual enough that I should write about it here, but the reasons I have it are my real source of personal accomplishment. As always, the story begins long ago….last winter, to be exact.
On one of those cold gray weekend evenings, I was sitting with a group of female friends and relatives happily discussing everything but the dire conditions of the world. Someone mentioned a half marathon relay taking place in Virginia Beach on Labor Day weekend, and we all voiced reasons that it would be a great road trip for us. Reason number one: It was at a beach! Number two: It fell on my mother’s 85th birthday. Three: Since she wasn’t alive to celebrate it, and because she always loved Virginia Beach, then, yes, we should definitely enter. And the last reason, obvious enough: Everything sounds like a great idea when there’s been enough wine! We paired up, went online and signed up for the Rock ‘n’ Roll Virginia Beach Half Marathon Relay.
Back then it was easy for me to go along. I wouldn’t be starting a walking regimen until I finished two months of physical therapy for my neck and back. Then I started walking with the therapist’s recommendations—ten minutes out, ten minutes back, three times a week. Then I was to increase by a couple of minutes each way every week. It seemed like a breeze. Except I didn’t want to walk some days. I was too tired. I had other things I needed to save my energy for. It was rainy. It got hot. I had out-of-town guests. There was always time enough to train–the race was months away.
Then there were times that I doubted my abilities to walk one block—days when my left foot slapped down like it was wearing a scuba fin. I tried to listen to my therapist’s voice: “Just go out and do it.” Nope, didn’t work. Often I expended more energy on finding a reason not to walk, than the actual walking would have used. Some days I convinced myself that I would cause irreparable harm from walking too much. If all of this sounds ridiculous to you, it’s probably because you are self-disciplined and motivated and not a slacking procrastinator like me.
Through this training time, our ten-member team suffered setbacks and obstacles of all kinds: a move out-of-state, a miscarriage, foot surgery, an exploratory laparotomy, a marital separation, a pregnancy and an MS exacerbation thrown in for good measure. The week before our trip, Hurricane Irene struck part of Virginia Beach, and she spawned a tornado that tore off the front of a house  three blocks from our rented beach house. Two days before leaving, we got a call saying that our rental house was uninhabitable due to pests. (This was not a shack–it was a new 9 bedroom, 5 bath house!) Only by the grace of God did we manage to get a substitute place the day before leaving. (That it happened to be oceanfront with an indoor pool was a sweet bonus!)

And so, we all made the pilgrimage to Virginia. The first night in the miracle house we shared the pre-race dinner of macaroni and meatballs (like ‘they’ say you should). The next morning at the ridiculous hour of 4:15 our eight-member team left for the race site. We were shuttled to buses to the different starting points.  There was a smell in the air—adrenaline, excitement, energy! Everyone was riding high, even me.  My half of the team was delivered to the transition zone to wait for our relay partners to come and hand off the baton (which was  a drum stick, not that anyone carried it at all.)

While we waited for more than two hours in that holding area, the adrenaline and energy dissipated.  I started to fear I wouldn’t make it even two miles. Or one.  I mean, we had to walk so far from the first bus to the second bus to that transition zone, and all this waiting was depleting my energy! Was it going to get too hot for me to walk? What if I lagged so far behind  that the van would have to pick me off the course?  Were there enough first aid stations along the way?   I laid back on the walkway and wondered what I had gotten myself into. Who did I think I was to try something like this? And why did I NOT train like I could have? Anxiety washed over me. And then it happened.

I heard some whooping and hollering, and sat up just in time to see the first racers come around the bend. Is that a bike? I didn’t know this was a bike race, too.  No,wait… the bicyclist is with someone in ….a racing wheelchair!! Whoa, I was not expecting that. Everyone was cheering as more and more of these chair-bound athletes came around the curve. I was flooded with emotion—what kind of strength they displayed!   I chided myself for having a defeatist attitude; after all I could walk.  A few minutes later, the first runners started speeding by. As an lifelong non-runner even before I got MS,  I stood amazed, imagining how fun it must be to fly on your feet!  Shortly after they passed, I went back to my little pity party.
While waiting in a long line for the porta-potty (I’m so uncomfortable with these), there arose such an extended cheer that I got out of line to see what it was. Rounding the curve was a runner with a burgundy tee-shirt that read Team Hoyt. And this runner was pushing a race wheelchair decorated with streamers and cradling a youngster. I saw young legs rising out of the chair, as if running through the air. The way they moved I suspected their owner suffered from cerebral palsy?  And I started to sob. Sob, sob, sob.  How could I complain and doubt and deny my abilities in light of this child’s obstacles? I slapped my face (Sounds weird now, but quite fitting then, especially if you enjoy talking to yourself as I do.) and I said out loud, “You are definitely doing this!” Other Team Hoyt runners and their precious cargo came by, and by the time it was my turn to walk, I had decided that I was walking the course for them.

I took the first step of my race with those kids on my mind and in my heart. To help me along the miles, I had my wonderful teammates’ encouragement and cheerleaders from local schools telling me, “You’re doing great! Keep going!” (They cheered for everyone of course, but I took it personally!) There were people handing out cups of water and Gatorade and there were sprinklers for cooling off. Bands played in almost every section we walked through and when the road fell silent, there was a dedicated man ringing a cowbell and shouting his encouragement. Every mile marker I passed made it all the more important to finish, as I kept those little racers in mind. With my teammates I managed to complete the 5.2 miles, crossing the finish line on the Virginia Beach boardwalk in the full sun with the thermometer reading a toasty 86 degrees. And that is exactly how I earned my tan.

CCSVI: Coming Undone??

I’ve totally enjoyed the resolution of many of my MS symptoms for the past seven  months, but that is changing now. (for about 1 month)  It’s like someone is playing a trick on me, and taking back all the gifts I got for Christmas.  The bone-crushing fatigue is creeping back; I started taking two Provigils a day without much relief. My double vision has returned–no pill for that but I should probably get some Astaxanthin. That’s IF I remember to go out and get some or ask my right-hand man (Vinny) to do it. Memory problems are again a big issue, so I probably will forget to ask.  My balance is wobbly again, and of course, my gait has widened.  My heat intolerance is as bad as it ever was.  But the saddest thing for me  is the return of my st-tt-t-tut-ttering and those dreadful long………………………………… pauses when I speak. I know how upsetting it is to my family when it happens and then it bothers me all the more.  My speech was very bad for a few days, like the start of a doozy of an exacerbation. I dreaded calling the neurologist,  because I’d probably be convinced to do a round of  IV steroids. ( and I don’t want to do that again).  I did, however, try a supplement called Inflazyme, and seemed to be helped by that. I also called the vascular doctor in Albany and will see him in 10 days, get another scan, and decide the next step.  To be honest, I’ve been very bummed out about this theft of my abilities, and more Eeyore-like than I care to admit.  I mean, I have/had plans to have lots of summer fun!!  And I have a huge plan to walk in a marathon relay with my sisters on September 4th!  I don’t know what will happen with that, but this I know: all of my MS symptoms practically disappeared when my neck veins were cleared, so this is probably a ‘restenosis’ or renarrowing of the fixed veins.   I will go and have them unkinked or whatever again.  And I will  hope for a longer-lasting relief from the symptoms next time.

As for this blog…it’s good to be back!