My Disabled Cruise Story - Chapter 1 - Herding Cripples is Easier than Herding Cats

Like so many family-oriented couples, Kim and I found ourselves approaching the empty nest stage of our lives having never enjoyed a romantic vacation without the kids. A cruise holiday had always been on our bucket list, but we never even had a serious discussion about embarking on one.

One morning this past winter I realized that I was having more difficulty transferring from my bed to my wheelchair. At that moment I had an epiphany. What was I waiting for?  I wasn’t going to get any better- only worse. I would never be more capable of enjoying a vacation than I was right then. Later that same day I presented my case to Kim. I was either very persuasive, or it was simply an inspired idea, because she instantly embraced the concept of us going on a cruise (or the third possibility is that she always wanted to go on one, but her New England frugality kept those feelings properly suppressed).

We spent a couple of weeks exploring our options. Much of the research involved finding a cruise line, a cruise ship, and ports of call that were more handicapped accessible than average. I referred to my friend Candy Harrington’s book 101 Accessible Vacations for some guidance. Since this was our first cruise experience, we worked through a disability travel agency, Snail’s Pace Special Travel Services. Eventually we booked the Royal Caribbean cruise line, Freedom of the Seas ship, and a Western Caribbean itinerary- with an April 18^th scheduled departure.  Below is a map of our cruise route. 



Royal Caribbean offers wheelchair accessible rooms that are about 1.5 times larger than standard staterooms (for the same price). This leaves ample space for maneuvering a wheelchair. Just as importantly, the bathroom is extra roomy, and laden with grab bars. Because this was a once-in-a-lifetime vacation for us, we splurged for a room with a balcony (accessible). The public areas in these ships are highly accessible too. All the public restrooms have pushbutton door openers for both the outside door and the handicapped stall door. Most of the other public doors are also automatic. These are rare accessibility features for even the most progressive buildings on shore. 

we pushed these beds together

roomy cabin

accessible shower

accessible toilet

accessible balcony and accessible glass of beer

Kim and I shared the planning duties. I made packing lists and spreadsheets. That’s what I do- bring order to chaos. I dealt with the travel agent and the cruise line. Kim researched activities on the ship and at the ports, to plan our entertainment and sightseeing. She joined Facebook cruising groups to learn more about this type of vacationing. We both did a lot of shopping for “cruise clothes.”

So why am I writing about this experience? Is this the what it is like for a disabled person to cruise post? Is it the cruising with MS post, or is it the taking my iBOT on a Caribbean cruise post? Really, it's not written from any one of these perspectives. I’m just sharing with you what this adventure was like for Kim and me, given our unique challenges. Take from it what you will. No matter your reason for reading, hopefully you will find this post to be amusing, informative, or maybe it is just boring enough for you to read when counting sheep has failed.

The first leg of the journey was the flight from Portland, Maine to Orlando, Florida. One of the big packing decisions we had to make was whether or not to burden ourselves with my manual wheelchair. I've owned this chair for over a year, but I've probably spent a grand total of 30 minutes sitting in it. I really love the iBOT, and I don't enjoy the manual wheelchair at all. Yet, it seemed like an unacceptable risk to embark on this dream vacation without any backup mobility device, just in case there was some sort of problem with the iBOT. There was never any consideration given to going on this trip without my iBOT. So, reluctantly, we packed up the manual wheelchair and the stuff that goes with it, our three big bags, our two carry-ons, and headed to the airport. As we were unloading our gear from the minivan at the Portland airport it became immediately apparent to us that the manual wheelchair was no burden at all, but rather a very useful luggage cart. Who knew?



I had not flown in a year, but nothing had changed for me. I still drove my iBOT to the mouth of the plane and then transferred to what is called an “aisle chair” or a “straight back chair.” I took the computer controller and the foot rests off the iBOT and folded the seatback down. This essentially put the iBOT in what I call “armadillo mode.” I instructed the baggage handler on how to set and release the brake on the iBOT so he could push the chair around easily. Two strapping men got me down the aisle in the aisle chair and I transfer to my seat. Standard stuff.

airplane aisle chair

iBOT standard mode

iBOT armadillo mode

On the trip to Orlando we had a short layover at Reagan International Airport, so I arranged for my iBOT to go directly from one plane to the other, just like all the other luggage. I was transferred from gate to gate in one of those ultra-flattering airport wheelchairs.

When we arrived in Orlando my iBOT was brought up to the mouth of the plane. I transferred from the aisle chair to the iBOT, reassembled it, and it started up just fine -- the same as the other dozen or so times I've flown with it. Kim and I went to baggage claim and picked up our bags and our cart/wheelchair and went to the taxi stand. We found a wheelchair taxi without too much difficulty and were transported to our hotel just a couple of miles from the airport. We spent the night there and then on Sunday morning our prearranged wheelchair van took us from Orlando to Port Canaveral, Florida, where the Freedom of the Seas and our dream vacation awaited us.

before boarding

view of ship from beach later in cruise

After being issued our boarding documents we were told to hang out in a special section of the waiting area. I soon realized that I was being herded together with all the other cripples (no offense…none taken). We watched as a wedding party boarded the ship, and then the cripples went next. What a fine looking parade we were- wheelchairs, scooters, walkers, canes, too old, too fat, bearded lady, sword swallower, you name it.  But I didn’t feel conspicuous. These are my peeps now.

And so began our cruise vacation- flawlessly. But what challenges awaited us on the high seas (cue ominous music here)?

To be continued…click here

My MS Story Chapter 34- Tell Me About the Bathroom

Life is like a movie-since there aren't any commercial breaks, you have to get up and go to the bathroom in the middle of it.
Garry Trudeau

A select few of us have legs that don’t work but a bladder that still does. I assume that we constitute a minority of wheelchair users in that way (although not so uncommon in the MS world). Because I have this versatile wheelchair that climbs curbs and stairs, the limiting factor of where I can go and how long I can stay is often bathroom access. My friends appreciate the incredible mobility that I have with my iBOT wheelchair, and often encourage me with phrases like, “Oh, you can get in there with your wheelchair, no problem.” But they don’t think about the bathroom. I, on the other hand, spend considerable time thinking about, wondering about, and strategizing about bathrooms.

New, public buildings are not the problem- airports, hospitals, shopping malls. The ones that make life interesting for me are the old buildings and the private homes.

Our favorite pub in downtown Portland is called Ri Ra. Up until a year or so ago, I could still manage to use bathrooms that required me to get up out of my scooter or wheelchair, struggle through a bathroom door, and use the toilet. When I could no longer do that, Ri Ra just wasn’t working for me anymore. Too bad, because it’s a fun spot to meet friends after work and a welcoming space to bring out-of-town guests for a cold brew.

So, as I’m driven to do by necessity sometimes, I became creative. There is a nice hotel directly across the (busy) street from Ri Ra. Now, anytime I’m enjoying my favorite pub and need to use the toilet, I put on my coat and gloves (if it is winter) and cross the street to the hotel. I carry myself as if I’m a guest while I zip by the check-in desk. Sometimes I even help myself to one of their complimentary chocolate chip cookies. They greet me with a “good evening sir,” or similar. I go around the corner to the lobby bathroom, use it, and then leave again. I can't tell if the folks behind the desk are naïve or compassionate.  Who's fooling whom anyway? 

John and Ann are good friends. Kim and I often visit their home to watch a Red Sox or Patriots game together. They have three steps up from their garage to their entryway, but this is no problem for the iBOT. Their first-story bathroom is accessed from a narrow hallway. I just can't quite make the corner into that bathroom. Until a few months ago I could manage to get out of my chair and slither on over to the toilet, but no more. So once again, I became creative.

The tightest turning radius in my iBOT wheelchair is actually in the balance mode. So at John and Ann’s house I now go into balance mode in the hallway, make my way into the bathroom, go back down into standard mode, transfer to the toilet, transfer back to the wheelchair, go back up into balance mode, exit the bathroom, and then go back down into standard mode. Piece of cake. It sounds like a lot of hoops to jump through in order to use the bathroom, but as a disabled person you either learn the patience required for these types of work-around plans, or you sit home all day.

Here's another problem I encounter sometimes -- low toilets. I visited some friends in Boston recently. Their condo was quite roomy. I could even get into the bathroom without going up into balance mode. The problem was, once I got situated on their low-rise toilet, it became very difficult to get back up. The vanity was to my right, so I had something to use as leverage for that half of my body.  There was nothing, however, to support the left side of my body.  I found myself stuck on their toilet for about ten minutes. I was on the verge having to call for help, something that personal vanity discourages. But, at the last minute I executed a successful, all-or-nothing lunge for my chair.

When I had my CCSVI procedure in Brooklyn in March, we met friends at a Manhattan restaurant for dinner. Kim and I arrived at the restaurant before the other six guests. After a rush hour drive from Brooklyn to Manhattan, I needed to empty my bladder. Unfortunately, the restaurant bathroom was inaccessible. I asked the maitre d’ if there was a handicapped bathroom anywhere nearby, and there wasn’t. Kim and I surveyed the situation in the restaurant bathroom a second time, and devised a strategy. Long story short- I held myself up by grabbing whatever I could (doorknob, countertop, Kim's shoulder) and Kim moved my feet for me one at a time, the 10 steps or so from the door to the toilet and back again. I nearly ended up sprawled on the floor a couple of times, but Kim propped me up (and I only outweigh her by 80 lbs). I refrained from drinking anything with dinner, as I didn’t want to wrestle with that bathroom again.

Last summer I was speaking with a friend of mine about my bathroom accessibility issues. She asked the question, "Why don't you just use a catheter and a bag?" One day I may have to do that, I explained to her, but as long as my bladder is still working I feel obligated to use it. So, for the foreseeable future, I'll continue to make the following request whenever we consider going someplace for the first time:

"Tell me about the bathroom."

CCSVI- Diagnosis and Treatment Log Entry #8- My Final Thoughts

(Photo credit: Wikipedia)

The world is a tragedy to those who feel, but a comedy to those who think.  - Horace Walpole

My journey through CCSVI self-education, diagnosis, and treatment has been one of the most remarkable experiences of my life, whether or not I ever see any benefit from it.

So with all that I have learned and all that I have now experienced, what is my position on the CCSVI – MS connection? From a purely scientific point of view, nothing is yet proven. We have pilot studies. We have anecdotal evidence. We have well thought out theories. We have incredible enthusiasm among patients and some doctors. We have trials in progress (not enough, mind you). We simply don’t have irrefutable, scientific proof of the nature of the connection yet, especially for the relatively rare primary progressive MS (my type).

I do have a scientific background, and that part of me will not be satisfied until much more data is independently collected and analyzed. But I am also an MS patient and an MS advocate. This side of me does not demand the same burden of proof as my scientific side does. The good news is that I don’t have to choose a single perspective. I can honor them both.

I am personally convinced that to some extent CCSVI contributes to or even causes MS, although I can’t prove it. I don't know how robust that relationship is, but I feel that there is something profound going on here. Again, I am less informed and therefore less confident about the relationship between CCSVI and primary progressive MS than I am about the relationship between CCSVI and the more common relapsing remitting MS.

Given this, what do I believe should happen next? I'm glad you asked.

I believe that every person on the planet with clinically definite multiple sclerosis should be tested for CCSVI. Unfortunately, I'm not exactly sure what I mean by “tested.”  Relying on the run-of-the-mill MRV and ultrasound examinations isn't the answer. There are only a few clinics in the world that are proficient at using these noninvasive tests to diagnose CCSVI. That is not a reason to stop using these tests, but rather a reason to become better at using them- through practice. The gold standard is the catheter venogram, and even that needs to be performed by an interventional radiologist who has some level of competency or at least genuine interest in CCSVI. Every MS patient deserves to know if the veins that drain their central nervous system are functioning properly, and they deserve to know that now.

I believe that every MS patient on the planet who shows evidence of CCSVI should be entitled to have it treated by a method agreed upon by patient and doctor. This might include stents, angioplasty, open surgery, etc.

I believe that CCSVI is the most promising area of research into the root cause of multiple sclerosis, and should be funded accordingly. I’m not (yet) calling for all other research into causes and treatments to stop, but our emphasis should be on CCSVI. Today, the percentage of MS research dollars allocated to CCSVI is grossly disproportionate to its potential benefit.

Given this, what is my commitment to the CCSVI cause? I’m glad you asked.

I personally commit to furthering the cause of CCSVI education and research. One of the ways I will do this is through CCSVI Alliance. They will be launching their website at http://www.ccsvi.org/ soon. I'll also continue to advocate for CCSVI research and education through this blog. I'll promise to speak about CCSVI with every MS patient or professional who will listen to me. I will commit to share my images, data, and personal experiences about my CCSVI diagnosis and treatment with anyone, anywhere, any time.

I need to thank a few people for helping me along the journey that culminated in my treatment for CCSVI on March 17, 2010:

• Dr. Sclafani, Holly Barr, and the rest of the team at King’s County Hospital Center for taking up the cause of diagnosing and treating MS patients who have CCSVI, and for taking such great care of me while I was a patient there.

• Drs. Zamboni, Schelling, Simka, Dake, Haacke and Zivadinov for advancing the cause.

• So many other doctors around the world who, although less well known than those listed above, are also studying CCSVI, and performing diagnosis and treatment of patients.

• My primary care physician, my neurologist, and their teams including Judy and Rebecca, all of whom supported me.

• Patients and patient advocates like Jeff and Joan Beal, Marie, Sharon, and others who become true leaders in the CCSVI/MS cause.

• My personal MS friends who I have spent countless hours discussing this with, including: Marc, Neen, Cheryl, Barbara, Kimberly, Lew, Al and so many others, and especially the group of MS patients who took the initiative to recruit Dr. Sclafani to the CCSVI cause.

• My two fierce angels, who befriended me and then introduced me to Dr. Sclafani- Michelle and Randi. Both have hearts of gold, but as a matter of both gratitude and self preservation I’m going to do my best to never get on their bad sides.

• My father, my two brothers and their wives, my two wonderful children, Kim’s parents, and all my other friends and relatives who have given me so much support, not only during my CCSVI adventure, but for the past 8½ years that I’ve battled this disease.

• My late mother, for all she taught me about living a disabled life with grace and dignity.

• And most of all, Kim. Words cannot express how grateful I am that I share my life with you.   

Because it may be a long while before I know if this CCSVI treatment helped my disease progression or not, I’m unsure of how to comport myself. Should I carry on as if I’m cured or as if I’m still sick?

That’s a trick question. Forgive me. The answer is the same no matter the outcome of my CCSVI treatment. To the best of my ability I'm going to live my life one day at a time, hope for the best, prepare for the worst, and treat each day as if it could be my last. I encourage each of you to do the same.

To see all of my CCSVI Diagnosis and Treatment Log Entries, click here.


Postscript: I apologize for the barrage of clichés at the end. Sometimes you just can’t improve upon time-tested wisdom. Regarding the future of this blog, I have no plans for it to become the CCSVI Channel (we are launching CCSVI.org for that purpose). CCSVI will certainly be one of my more common topics here, but I will make an effort to re-broaden my perspective to include more general topics about living a disabled life. For example, check back in late April to read about, and see some pictures of, what it is like to go on a Caribbean cruise in the iBOT wheelchair. Hint: although I will derive satisfaction from blogging about the cruise, just maybe that’s not the only reason I am going on it.

CCSVI- Diagnosis and Treatment Log Entry #7

In Log Entry #6 I wrote about what the experience was like for me during the actual CCSVI procedure. Here, in Log Entry #7, I’ll get into the details about the abnormalities that were found, and the actions taken to correct them. To catch up on my complete CCSVI Diagnosis and Treatment log, click here (and then scroll down). 

What an amazing experience it was.

Right Internal Jugular

An angiogram, which is an X-ray test using a special dye and camera to take pictures of the blood flow in the vein, was performed in the right internal jugular vein. This revealed a short segment stenosis adjacent to the confluence of the brachiocephalic vein. The diameter reduction associated with this stenosis was approximately 60%. The more important number, relative to flow restriction, is the cross sectional area reduction which in this case was approximately 85%.

Multiple collateral veins were noted at this location. Collateral veins indicate attempts by the body to establish bypass flow around an obstruction. Dr. Sclafani inserted the intravascular ultrasound device (IVUS) and confirmed the stenosis. A balloon was inserted, and the vein was dilated multiple times. Another angiogram was performed after dilation which indicated improved flow, diminished flow through collaterals, and no stenosis. Note that the nominal diameter of this blood vessel was 12 mm. Dr. Sclafani prefers to slightly over-dilate the vessel in these instances, and so a 14mm x 4 cm balloon was used.  Click on any image to enlarge it. 

 

From left to right, the first image shows the stenosis during angiogram. The second image shows the balloon partially inflated. Note evidence of the stenosis resisting dilation. The third image shows the vein fully dilated.

Left Internal Jugular

An angiogram was performed in the left internal jugular vein. This revealed a stenosis at the confluence with the subclavian vein. The degree of narrowing was similar to that in the right internal jugular vein, approximately 60% diameter reduction and 85% cross sectional area reduction. Collateral veins were noted at this location. The IVUS probe was inserted and confirmed stenosis. A 14 mm x 4 cm balloon was inserted, and the vein was dilated multiple times. Another angiogram was performed after dilation which indicated improved flow, diminished flow through collaterals, and no stenosis.



The above image shows the stenosis during angiogram.





The above images show the balloon during inflation.  Note evidence of the stenosis resisting dilation.



Above, angiogram after dilation, showing improved flow through the vein.

Azygos Vein

An angiogram was performed and indicated an abrupt lack of filling approximately 4 cm from the junction between the azygos and the superior vena cava. Dr. Sclafani inserted the IVUS device, which revealed a valve that was failing to completely open. This area was dilated with a 10 mm x 2 cm balloon. Note that the nominal vessel diameter at this location was approximately 8 mm. Another angiogram was performed, and improved flow was noted.

Above is an image of a shorter balloon being used to dilate the azygos at a relatively sharp turn in the vein.

Vertebral Veins

An angiogram was performed on the right vertebral vein. Stenosis was noted, but not treated. This is a smaller vein, and Dr. Sclafani was not comfortable performing angioplasty on it.

An angiogram was performed on the left vertebral vein, indicating that the vein branched into two smaller veins, which is abnormal. No treatment was attempted.

IVUS Images

Dr. Sclafani is innovating the use of IVUS technology in CCSVI diagnosis. I’ll have to take Dr. Sclafani’s word regarding what these images show. Maybe they are like the 3-D pictures that were so popular in the 1990’s. You remember- stare at them long enough and you see dolphins jumping over rainbows (or am I thinking about something else altogether). Anyway, here are some example images.



Above, the image to the left shows narrowing of the left internal jugular vein. The image to the right shows the same vein distended during inspiration (breathing in). Wait! I think I see it now. Do you?



The images above show an incompletely opening valve.  I kinda see it.

Significance of findings and treatment

Most of the public discourse regarding CCSVI has been regarding the internal jugular veins and the azygos vein, so I will address these first.  All three veins showed some type of stenosis, which is a significant finding. The fact that all three stenoses were repaired after angioplasty is potentially significant for my disease progression. 

On the other side of the equation, it is unknown whether the repair of these stenoses will be permanent. Furthermore, since most of my lesion load is in the cervical spine, it is unclear how much benefit I will see from even permanent treatment of stenoses in the internal jugular veins.

The findings of stenosis in the vertebral veins may be significant, given the location of my primary lesion load. In my situation, the vertebral veins may be a more important factor than they are in patients with a lesion load primarily in the brain. This remains to be seen.

Below is an MRI image of my cervical spine. This is the problem we are trying to solve (or at least halt the further progression of).  Arrows indicate MS lesions.

The Bottom Line

I had abnormalities in five out of five veins examined- all are blood vessels that drain my central nervous system. Therefore, it can be said that I had significant CCSVI. The three larger veins were all treated with angioplasty. The two smaller vertebral veins were not treated. One day I hope that we can attempt to treat at least one of these vertebral veins.

Only time will tell if Dr. Sclafani’s efforts were enough to slow or even stop the progression of my MS. I can only hope.

CCSVI- Diagnosis and Treatment Log Entry #6

“Life is either a daring adventure or nothing.”  Helen Keller

I can’t recall the precise moment when I decided that CCSVI was a legitimate theory about the root cause of MS. Probably it was in October of 2009. I was influenced, like so many of us are, by my friend the Wheelchair Kamikaze. If he thinks something is legitimate, it usually is. CCSVI really became clear to me when I sat down and spent about 6 hours reading through the TIMS message board. From that point forward, all other theories about treating MS became just so much background noise. Sorry, Big Pharma.

I will relate the rest of my CCSVI diagnosis and treatment story in two parts. This post will address what the experience was like from a patient’s perspective- mine. The second post will go into more detail about what was found in my veins, and exactly how it was treated by Dr. Sclafani, at King’s County Hospital Center in Brooklyn, NY.  Before I publish that second post, I’ll need to run it by Dr. Sclafani for accuracy (see the photo of the good doctor and me at top, with a photo of one of my veins on the monitor).

Although I approached this CCSVI adventure with a mixture of optimism and realism, I didn’t feel any apprehension. After I made the decision to follow this road, I never looked back. I was not confident in the result, but I was convinced that I had no better option.

I’ll pick up the story on Wednesday, St. Patrick’s Day, 2010 (see previous posts for an accounting of the days leading up to my procedure day). Kim and I arrived at the hospital around 11:30, because our new friend, Barbara, was being treated by Dr. Sclafani first. Holly, Dr. Sclafani’s capable assistant escorted us to the surgical intake area, and handed us off to that team. I filled out some paperwork, and we waited and waited. Finally, the surgical nurse came out and led me into the prep area.   

Kim helped me change from my street clothes into some surgical gowns that, well, were only marginally better than being naked. But you soon lose any semblance of modesty while undergoing this procedure, given that the doctors are operating from an access point near your groin.

The nurse started an IV in my arm. She was successful on the second try, which is par for the course for me. The nurses and Kim together transferred me from my wheelchair to a stretcher. Kim was allowed to stay by my side until it was time to move me into the operating room, which happened about 30 minutes after Barbara’s procedure was done.

Once I was in the operating room the nurses and technicians hooked me up to various monitors, and began to prep the area where the catheter would be inserted. When Dr. Sclafani arrived he stopped the show for a minute to conduct some legal, and frankly polite, formalities. He introduced his team and asked me to introduce myself. He asked me why I was there, and what procedure I was expecting to receive. This is a required step in New York to prevent medical errors, like doing brain surgery on a patient with tennis elbow, for example.

After I was given the local anesthesia at the injection point, there was no more pain involved with this procedure. There were, however, some very odd sensations when the catheter was moved around my venous system, when dye was released into my veins, and when balloons were inflated. It was all good though. That was where I wanted to be, and those were the experiences I wanted to have.

Dr. Sclafani first examined my right internal jugular vein. I could actually hear the whoosh sound of the dye as it was released into my vein. By watching the behavior of the dye on a monitor, and by using a tiny ultrasound device from inside the vein, he found stenosis in the right jugular, and ballooned it. He also found very similar stenosis in the left jugular, and ballooned that. Nice symmetry, huh? He identified a problem with a valve in my azygos vein, and ballooned it. He also found issues in both of my vertebral veins but was not able to correct those.

I didn't always feel the catheter moving around in my chest and neck, but once in a while I could sense its location.  But again, these sensations were subtle, and not at all frightening.  I could sometimes feel when the balloon was being expanded, and other times I could not.  When I felt it, it was not a sharp sensation, but rather like a momentary feeling of gas (the burping kind of gas).

Once the procedure was complete, the catheter was removed. A nurse applied significant pressure to the injection site for 20 minutes, and then covered it with a garden variety band-aid. I was then transferred from the operating table to a stretcher, and wheeled off to another room, where I had to lie still for an hour to let the injection site completely heal.

I love my wife dearly, and she was a rock for me the entire week. She really took care of me. I’m blessed to have her. But, when she walked into the recovery room with a sandwich in her hand, I may have shown the sandwich a little more love and appreciation than I did my wife. After all, I’d been fasting for quite a few hours. Sorry honey.

Although we had discussed the possibility of my spending the night in the hospital, I think that Dr. Sclafani is finding this to be generally unnecessary. So we drove back to the hotel, and I enjoyed a comfortable night’s sleep. At about 11:00 on Thursday Kim and I met with Dr. Sclafani to go over the procedure and the images in detail. We were home in Maine by 10:00 Thursday night. What an experience!

Dr. Sclafani’s assistant, Holly, is an amazing woman (picture on right). She is now managing the entire CCSVI patient workload, while still doing her "day job" for Dr. Sclafani.  I’ve received emails and calls from her at some pretty odd hours of the day, which speaks to her dedication to her patients. She knows she is doing important work, and thrives on it.

Each time I met with Dr. Sclafani this week, I became more impressed with him. He cares deeply about his patients, and cares relatively little about what others think of his foray into experimental MS treatment (and I mean this in a good way). The word “maverick” comes to mind. Yet, he is anything but reckless. He’s just the sort of doctor that the CCSVI movement needs.

As soon as I can I will post more details about what was found, and how it was treated.

How am I doing, you ask? I’m doing just fine, thank you. Ask me again in six months or a year, and I may be able to tell you if this procedure had any positive effect on my disease progression.  Wouldn’t that be something?

CCSVI- Diagnosis and Treatment Log Entry #5

Just a short note to let everyone know that today's procedure went well. Dr. Sclafani successfully used angioplasty on both of my jugular veins and my azygos vein. I have a meeting with him tomorrow where I'll get more details on just how severe the stenosis was.

I'm in my hotel room now, and expect to be sleeping in my own bed tomorrow night.

No miracle changes on the operating table. It may take me many months to assess the impact.

No matter the final results, it was a most interesting experience.

I will blog in more detail later.

CCSVI- Diagnosis and Treatment Log Entry #4

I have a couple of hours to kill before I leave for the hospital this morning for my CCSVI venogram and possible angioplasty, so I thought I’d blog for a few minutes.

I was critical of MRV’s and ultrasounds in my post last night. Let me qualify that a little bit. For someone in my situation, who will be getting the gold standard for CCSVI diagnostic tests later today (venogram), the noninvasive tests I underwent yesterday are relatively unimportant to me.

But we do need to come up with a set of noninvasive tests that are accurate and repeatable, for a couple of reasons. First, administering a venogram to every MS patient in the world would be a tough sell, today anyway. It is an expensive test, and it is somewhat invasive. So we need a screening tool, but it can't be a screening tool that has high false negatives or high false positives. At this point in the early “life” of CCSVI, it takes someone with the experience level of Dr. Zamboni’s team in order to accomplish this. It takes practice. It takes repetitions. Some organizations around the globe are starting to gain this valuable experience, but so many other organizations are just getting started.

Second, we need a noninvasive test in order to examine those patients who have already undergone a CCSVI procedure. Those people will want to have their CCSVI repair evaluated periodically in order to determine if the veins that were opened have closed (re-stenosed). It’s not practical to have those patients submit to an invasive test every six months or year.

So, although I consider the ultrasound and MRV to be imperfect tools at this time, I am not advocating that we discard them. I am advocating that we perfect their use in CCSVI diagnosis.

CCSVI- Diagnosis and Treatment Log Entry #3

The most exciting phrase to hear in science, the one that heralds new discoveries, is not 'Eureka!' (I found it!) but 'That's funny ...'
  - Isaac Asimov

If yesterday showed King’s County Hospital Center at its worst- slow service, confusion, piles and piles of sometimes redundant paperwork- then today revealed the hospital at its best. In one day I had an Ultrasound, MRV, neurological exam, and consultation with Dr. Sclafani (photo below). Everything went off like clockwork.



This is such a learning experience for me, and for all of us. I learned something today which I began to suspect a week or so ago. Noninvasive procedures such as ultrasound and MRV have minimal value, especially when they are being conducted by people without a huge amount of experience in diagnosing CCSVI this way (which is almost everyone), and especially when you plan to undergo a venogram the following day anyway. My ultrasound today probably showed no CCSVI issues, or maybe it did. Who knows? Who cares? Today’s MRV of my jugular veins may have indicated some CCSVI, or maybe it didn’t. Who knows? Who cares? The azygos vein was not scanned at all today, and according to Dr. Zamboni this is the vein most often associated with stenosis in primary progressive MS.

Use of these noninvasive tests are a bit like trying to map the surface of the moon by viewing it through a telescope. The venogram is more like mapping the moon by walking on the surface- with a surveyor’s transit in your hand. Tomorrow, Dr. Sclafani will be walking on the moon for me.

Barbara, who is the other person being treated this week, is first up tomorrow morning. I’ve grown to know Barbara quite well this week. She’s an incredible woman who deserves some sort of relief from MS as much as anyone does. I’ll be rooting for her.

When Barbara is done, it will be my turn. I won’t be able to report out to relatives and close friends until late afternoon or early evening. I may or may not be able to blog about my experience tomorrow night.

Am I nervous? A little. I’m not anxious about the procedure itself. I’m worried that I could be the first MS patient of Dr. Sclafani’s who does not have CCSVI. Lying on that table tomorrow, wide awake, with a catheter wandering around in my venous system, I’ll be thrilled if I hear Dr. Sclafani utter something along the lines of “that’s funny…”

CCSVI- Diagnosis and Treatment Log Entry #2

Today was a day of hurry up and wait.  Nothing accomplished other than paperwork, etc.  Tomorrow should be busy with MRV, Ultrasound, and consults.  It’s late, and today was uneventful, so this post will be short.

Why is it late, you ask?  Well, Kim and I went to dinner in Manhattan with a group that included some MS friends of mine.



Left to right:  Michelle (bestadmom), Marc (Wheelchair Kamikaze), Barbara (Montana), Mitch (Enjoying the Ride)

Oh, and I now have clearance to share Dr. X’s name.  He is the same physician who has already treated Michelle and Marc- Dr. Salvatore Sclafani of the Kings Country Hospital Center in Brooklyn, NY.

I hope to leave a much more detailed post tomorrow, because I’ll be less tired, and, frankly, I should have more to write about.

CCSVI- Diagnosis and Treatment Log Entry #1

(Photo credit: Wikipedia)

As I indicated in my previous post, this is my CCSVI week- diagnosis and hopefully treatment. I plan to update this blog frequently with details of my adventure. This post is installment #1.

My lovely wife and I made the trek from Maine to our hotel room- a 5 hour drive without traffic, bathroom breaks, wrong turns, etc. So, it was about 7 hours total. I have this hotel room reserved for 8 nights, but I’ll be looking for another room tomorrow. I’ve learned over time that the term “wheelchair accessible” is a very subjective one indeed. I’ve traveled a lot in my wheelchair, and this is the smallest “wheelchair accessible” room I’ve ever seen. I can’t even turn my chair around in it. I have to drive in, and back out. I won’t trouble you with a description of how complicated it is for me to use the bathroom.

But we’ll survive one night anyway. The internet access is good, and free, and the place appears clean.

I’ve had about 7 months to think about CCSVI, and today I had about 7 hours to really think about this. Here’s where my mind is now…

There’s a battle going on inside me, other than the battle between MS and my central nervous system, and other than the battle between the anxiety of traveling and the tranquility of my little plastic glass of shiraz. The battle I’m referring to here is between optimism for the events of the coming days, and realism about the prospects.

One part of me has optimistic expectations that this experience could affect my MS in a positive way. I don’t spend much time talking or writing about this part of me. I’m almost ashamed of it. But I must admit that this aspect of my being does exist, because if I didn’t have some level of optimism, I would not have spent hundreds of hours researching this, and I wouldn’t be sitting where I am tonight. This is the emotional, hopeful part of me.

The intellectual part of me is working hard to keep the emotional part of me grounded. My brain keeps telling my heart to guard its expectations. After all, this is an experimental treatment of a condition that is related to MS only theoretically (so far). If I let my hope and my emotions run the show, I could be in for a big disappointment.

So my state of mind is the product of these two warring factions in my head. So far they are fighting to a draw, which is probably a perfect situation from a mental health point of view. A little optimism is good for the soul. A little realism is needed to hedge against the possible negative outcomes.

What are some of the potential outcomes this week?

1. We could find no problems with my veins. Ironically, healthy veins would be a huge disappointment for me. I’d be back to the drawing board in terms of finding a strategy to fight my MS.
2. We could find problems with my veins, but be unable to fix them. This is disappointing, but less so than outcome #1. If I know I have problems, I can continue to research options for repairing them in the future.
3. We could find problems with my veins, and successfully address them surgically. This is the ideal outcome of this week’s work. But even then, there are three possible sub-outcomes (I just made that word up):
   
   1. The repairs could be permanent, and positively affect my MS (best sub-outcome).
   2. The repairs could be temporary, and re-repair would be required later (next best sub-outcome).
   3. The repairs could be permanent, but have no positive effect on my MS (worst sub-outcome).

What keeps my spirits up is that I’ve been wondering and wondering for so many months, and now I’m that much closer to having answers. Answers are good.

Schedule for tomorrow: MRV and then dinner with friends.