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!

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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?

 

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.

CCSVI: Quick Update

After fighting off a cold that wanted to be bronchitis and winning (by the grace of God alone), I have found a bigger opponent: deep and dark–inky dark– blues. In days like these I measure each step and emotion and compare it to the pre-liberation days when my MS was at its worst.  After searching the notes that I wrote on the way to my first Liberation Procedure, I’m assured that things are not currently as bad as they were  four months ago. My balance is still much improved.  My fatigue continues to be lessened. I never went back to Provigil twice a day, but I take my morning dose out of habit and I think a little fear. The issue of trusting my body is an ongoing learning process! Although I am not exhausted after a full day as in the past, I am not as resilient as I had been after each of the procedures. That is what tells me that some restenosis has probably occurred.  My appointment on Valentine’s Day will assess the blood flow and I will have an answer then.  I haven’t taken my Copaxone for a long time.  I think after October 4th I injected about 12 times the first month, and once early in both November and December.   Not injecting is not at the suggestion of Dr. Mehta–au contraire! But I have an ethical dilemma —do I believe that many of my MS symptoms are the result of restricted blood flow from the brain? And if so, then for what do I need the chemicals of the injected drug?  If I believe that way, and I do, then I should take a stand. And that is why, basically, I do not inject. ( Just in case anyone out there is wondering.)

Now it’s time to make dinner. Tonight is tilapia night. And brown rice with mushrooms and peas (never made it like that before but that’s what I’m making). And fresh mango for ‘dessert’.  I do love me some mangoes!

2010: The Year I Regained Hope

I’ve battled multiple sclerosis for more years than I care to count. It takes a lot of imagination for me to recall a time that I didn’t battle relentless fatigue, pain, weakness and cognitive dysfunction.  There were many other skirmishes along the way—loss of vision, loss of hearing, optic neurtitis, double vision, and that bout of crazy speechlessness when the doctor thought I’d had a stroke.  I could tell that I was “progressing” bit by bit, but my loved ones never want to admit this, and to my neurologist I was mostly doing fine.(comparatively speaking)

Enter the theory known as CCSVI. I first became aware of it just about a year ago (blog entry Jan 11 2009) and during the past 12 months it has generated controversy, debates, discussions, covert operations, and what seems to be a cloak-and-dagger chaotic mess.  The theory and diagnosis of CCSVI  led to venoplasties of the internal jugular veins and azygous veins of people with MS;  this treatment of CCSVI was first called “Liberation Procedure”, but that moniker seems to have fallen out of favor recently.  Now treatments  are being done across the world and patients have flocked to the few places in the few countries doing them.  That is what made me aware of the phenomenon of “Medical Tourism”.  Patients set up appointments in Bulgaria, Poland, Mexico, or Costa Rica (etc) and pay for package deals that include the medical tests, procedures and room/board.  I’m lucky enough to live in New York (sort of oxymoronic) so I had my venoplasties done a couple of hours away in Albany.

I say all that–well, mostly because I suffer from a digressive mind–to say, that 2010 is the year I regained HOPE!  When I had my veins untwisted or opened so that the venous blood in my brain could flow back to my heart in a more normal way, I had such a lightening of “MS” symptoms!!  To have energy again, to speak with a normal cadence, to move about without falling—these were and are priceless gifts that I received from what I will always call my Liberation Treatments!  There is HOPE that I can be better!!  The fact that I have had some restenosis of the vein(s) doesn’t negate my hope or deter me from a better life.  No, it assures me that by restoring an open route for my blood to flow there are multitudinous positive benefits!  I’m waiting to experience all of them. That’s what 2011 is for.

 

Next stop: Liberation!

I’m headed back to Albany tomorrow for my 2nd venoplasty.
My entry about last night’s CCSVI and MS roundtable there will have to wait, unless I can align a couple of brain cells to function tomorrow at 6am.
My main objective, though, is to remain calm and optimistic. I’ve heard that a low stress environment is the best for the endothelium (lining of the blood vessels). Last time I tried this low stress thing I got so worked up that I probably inflamed every blood vessel in me.
This time, I’ll be praying for calmness, breathing deeply and hoping my beloved Dr. Mehta has a keen eye to find the blockage and a steady hand to fix it.

CCSVI: Update

I’m still feeling less fatigued! I was shopping with one of my girls yesterday (with my new granddaughter too!) and I was told that I was walking too fast. I’m noticing that at times the extra energy spurs my body forward faster than it has moved in a long time. It’s a nice feeling; doubly rewarding because I haven’t been all-out collapsing after an outing.  This is not to say that I don’t get tired…but it feels more normal, like a tired that I’ve earned by being busy. Vinny says that I’m improved by 30% overall, and I have to say, I appreciate his input.

I’m looking forward to seeing Dr. Mehta’s in Albany on Friday the 12th for my 2nd intervention. I’m also hoping to make it to the big symposium 2 days before that, also in Albany, at a place called the Egg. It’s called the Vascular Roundtable, and the speakers include a neurologist and some famous CCSVI names like Dr. Dake and Dr. Haacke. Whooee! An historic occasion to be sure!

I can’t say everything is going well though. I had some abnormal blood test results this week and the concerns they raise require me to see an endocrinologist (Tuesday). [None of this has anything to do with CCSVI or MS.] I had a major pity party for two days, wailing that familiar tune, “Why Me, O God, Why Me?” It took me awhile to hear the refrain sounding back at me…”My Grace is Sufficient For You.”