Morning are Great! (Kinda)....and getting better

Two weeks and one day......If you'll remember from a previous post that 'Mornings are Great! (kinda)' in regards to Courtney's walking and balance.  Well, that still holds true, but the mornings seem to be getting even better.  These improvements may be short-lived, as we are very aware that restenosis of the veins after the Liberation procedure is common, but its pretty exciting to see some positive change for the first time in years.

Although officially diagnosed with Relapsing Remitting MS, Courtney has never had a period of remission.  Its been a gradual worsening of symptoms for 5 years.  From that frame of reference its easy to understand how significant little changes for the better can be.  I'll let the videos do the rest of the talking today (all videos were taken in the morning).....and will keep updating regularly. 

Cheers,

John

All vids here are 2 weeks and 1 day post procedure

Walking

Hands Dexterity

Leg Lifts

These vids were 1 week post procedure

Walking 

Hands

Leg Lifts

For comparison, here are pre-procedure vids

Walking

Hands

Leg Lifts

Courtney's Liberation Procedure in New York

Well, it's 6pm the night before we fly home, reflecting on our trip to Brooklyn to have Courtney tested and treated for CCSVI.  It's been over a year on the waiting list and a lot of questions and scares in the journey to this point.  Questions and scares that will be there always baring a miraculous and not expected recovery from five + years of confirmed Multiple Sclerosis, and no telling how many more undiagnosed.  Healing, recovering from that kind of damage to the nervous system doesn't happen over night, and in many cases doesn't happen at all.  We have no expectations, only hopes, of some sort of recovery, relief.

What we do have is fight, desire, love and a willingness to do whatever is in our power to stop Courtney from progressing.

72 hours post-procedure there are little signs and hints of improvement, nothing major, and as far as we know could be temporary, coincidence, placebo....could be the beginning of greater relief, more long-term healing and an answer to some of the questions regarding how to manage certain symptoms present in Courtney's MS experience.  There is constant fear that the flow in her veins could become obstructed again at any time, requiring more and perhaps more invasive treatment (stents).  For the time being we're riding the train where it takes us and will make the decisions presented us as they come.

So far, there are a couple of things worth noting regarding Courtney's symptoms.  Her feet are considerably warmer at night, and she has spurts of intense feeling energy (has happened a few times the last couple of days). In addition she has experienced a little less spasticity, and seemingly has more dexterity in her right hand (able to cross her fingers, and point straight with her index finger), although both the spasticity and dexterity issues persist at times.

We had a wonderful trip.  Thank you to everyone who helped make it possible.

The day after we arrived was cold and rainy, so we ended up camping out in the room.  The next dayhowever; after Courtney's ultrasound testing, we took a taxi into Manhattan , visited the Strand Bookstore, then walked (and rolled) 36 blocks up Broadway through Union Square Park, Times Square, grabbing some great pizza from a little hole in the wall joint on 46th St, capping the night with a really funny Broadway show, Book of Mormon.

The following day was procedure day.  Arrived around 10:30, Courtney was done in recovery at 5:30 and we just got her back to the hotel to rest and recover.  The day after we hit the Clinic for a follow up and then I pushed her back to the hotel through Prospect Park and the streets of Park Slope Brooklyn, along the way catching the filming of The Amazing Spiderman.  Sunday we grabbed a cab to Obscura Antiques and Oddities in Manhattan, grabbed some great street-vendor food and met up with Mark "Wheelchair Kamikaze" Stecker and his wonderful wife Karen at the Metropolitan Museum of Art, wheeling through incredible photography, sculpture, and some of the most amazing guitars ever made. Visits from some of Courtney's long lost friends of over 15 years put a great bow on a really great trip to New York.

I hope to be more active in the following weeks, please keep checking in.

Best Wishes,

John & Courtney

Courtney's Liberation Procedure in New York

Day After the Liberation Procedure

Yesterday we arrived at the clinic a little before 11am, had a wonderful consultation and examination with Dr Sclafani who took the time to explain everything to us, and did a very thorough examination before taking Courtney back for her procedure (the rumors are true, he's a great man!). 

Courtney's procedure took a little longer than expected, about 3 hours. She had both of her jugulars and azygos ballooned, and other than a complication with the catheter in her left IJV everything from my understanding was fairly smooth going. She did say the actual ballooning was painful for her, but the good folks at AAC took good care of her to make sure was as comfortable as possible. 

After about an hour in recovery we took a cab back to the hotel, got her a little food since she hadn't eaten since the night before. It was a fairly long night as the spot where the catheter went in was seeping a little requiring a change of the bandage every 3-4 hours. She was sore, physically tired and mentally exhausted. 

Today we went back by the clinic to get her leg checked out which was all good. She's sleeping now, and has been in good spirits all day.....I decided to push her through the streets of Brooklyn going from the Clinic, through Prospect Park and up through all the little shops in Park Slope..we even got to watch Martin Sheen do a scene as they were shooting part of the new spiderman movie a block from the clinic. 

Couple of interesting points to note, last night, she was able to sleep with her feet out from underneath the covers because they were hot (she used to sleep with her feet out, but hasn't in years). She didn't take any of her spasticity meds last night, and her legs didn't spasm at all. There have been a few times where she has had an itch on her foot or knee since last night that made her leg jump a little, but other than that the spasticity seems to be better post-treatment (time will tell if this is just temporary relief or not). She also mentioned being able to feel the carpet with the sole of her right foot, which she has had very little feeling in. She was having fun pointing at me last night with her right hand.....fun because she hasn't been able to straighten out her index finger at will for a while. 

Thats about all I have to report at the moment.  Will update again in a day or two.


Until then, here are a couple of pictures of her left ijv taken during her procedure, the banding in the balloon clearly shows where she had a problem on that side.

No....Sleep....Till Brooklyn

Well, we've finally made it to Brooklyn.  Courtney will have her ultrasound testing tomorrow and procedure on Friday.  Again I want to say thank you from the bottom of our hearts to everyone who pitched in to make this trip possible for us.  Your thoughts, prayers, good vibes are all felt, they are already working...

We had a great cold and wet adventure today, wheeling down the rainy and windy streets of Brooklyn on our way to the nearest wheelchair accessible subway entrance.  Made it about 15 blocks before the cold and wet was just too much for Courtney to handle....we're still noobs at this wheelchair business and learned a valuable lesson today....wheelchairs + rain + cold = suck

So we hailed a cab, came back to the hotel, orders some great  food and have had a wonderfully relaxing afternoon.

Expect frequent posts over the next week.

Cheers

-J

Mornings are Great! (kinda)......Before - Part 1

Here are the first in a series of "Before" videos as we document Courtney's CCSVI journey.... instead of posting before/after all at once after everything is said and done we want to document as we go.

Mornings are typically the best in terms of mobility, here are a few videos of Courtney taken just a little while ago:

Walking

Leg Lifts

Hands

Here are a couple of clips documenting spasticity in Courtney's right leg:

Finally

September of 2009, I came across a thread on the TIMS forums regarding CCSVI. For the first time since Courtney's diagnosis back in 2006 there was a theory that made sense. Talk about gung-ho..... there was nothing at that time that could stop me from getting my wife tested and treated. I must have emailed/called every Interventional and Neuro Radiologist in Texas trying to find just one doctor who would take this somewhat new CCSVI theory seriously...brick walls everywhere.

We turned to Courtney's General Practitioner, who helped us make the first step when she gave us a prescription for an MRV. All we needed was some pictures, proof of a possible abnormality and THEN maybe we could get an IR to see her. Well, with the help of a friend we met through the TIMS forums who happened to live in our city it worked. Long story short, with Courtney's MRV prescription in hand, we finally found an IR who was willing to review the images and consult with us. The initial MRV showed very heavy narrowing in both of Courtney's jugulars, and the IR did an impromptu ultrasound on her neck, which confirmed they were about 90% below normal in terms of diameter. Instructing Courtney to hold her breath and bare down (valsalva) we watched her jugulars expand to the normal range...then when breathing normal again they narrowed. Because of this little valsalva test, the IR said there could be no obstruction in her veins and would not move forward with a venogram.

Devastation. That's what it felt like that day. 5 months of work to get to that point, with so much evidence that something was wrong and then bam.... a professional, well-respected IR tells us there is no problem with Courtney’s veins. About that time we heard of another doctor who was getting heavily vested in the research and MS community. After reaching out to this doctor and his assistant, getting on their waiting list, and staying patient through IRB denials, alternative clinic locations and the general medical politics that come with a new controversial theory like CCSVI .....we are finally booked to see a wonderful Doctor who is not only taking CCSVI testing and treatment seriously, but is in many ways a pioneer in the area. We could have looked for other Doctors and possibly been able to find treatment before now; however, Courtney has been fairly stable the last year and we wanted to wait for who we thought would be the BEST doctor to see….I feel like we have succeeded in this painfully slow quest.
As excited as I am that we’re finally looking at a real date (only 6 weeks away!), I’m definitely tempering expectations.

Over the next few weeks we’ll be taking many videos to document Courtney’s current level of disability and will be taking many videos after to show what her experience is. Good, bad or indifferent outcome, it feels like we’re doing something. We’re leaning back on one foot, winding up and taking the biggest swing we know how at this beast called MS….I hope we break its fucking nose.

New York, here we come.

Insurance Approved

It seems the last big hurdle has been overcome as our Insurance has been approved by the clinic, all that is left to do is schedule the date.....more to come.
-John

Moving right along...

After over a year of patiently waiting things are quickly progressing in our efforts to get Courtney tested and potentially treated for CCSVI, aka the Liberation Procedure. I assume at this point if you're reading this blog you know what the Liberation Procedure is; however, for good measure here is a little reference for ya: CCSVI Alliance - you can find just about anything you would want to know through this site, and if you are looking for another great place to donate I highly recommend the CCSVI Alliance.

This is a mixed bag of emotion from my (caregiver, husband, best friend) perspective. I'm excited and hopeful yet extremely cautious because I've seen the emotional stress and depression when hope is shot down. When you have a non-curable disease that is pretty much guaranteed to progress at some unknown rate its emotionally saving to have a glimmer of hope somewhere to hold onto. CCSVI has been that hope for a while now, the ace in the hole that we hope will help us win a hand in this crazy poker game of Multiple Sclerosis.

We hope for even the slightest symptom relief, just being able to cook dinner without getting exhausted would be a big win; however, the big prize is always in the back of my mind. What I wouldn’t give to see Courtney walk again with more ease…

Just waiting on Insurance approval and we’ll be setting the date for the testing/procedure, booking flights and hotel and will officially be set. Thanks so much to all of you who have pitched in with a few dollars here and there to make this trip possible for us. We’re still gladly accepting donations, good thoughts, prayers, positive vibes and anything else you want to send our way.
Much love to you all.
-John

CCSVI on NPR

http://www.npr.org/2011/01/31/133247319/doctor-challenges-cause-of-ms-and-treatment&sc=nl&cc=es-20110206

just click the link to listen to or read the story. nice overview.

Jet stalks the pooping Chewla

backyard sky

My First Post

So, my first post is lazy. John thinks I should post some writing, so here's a short story I wrote for an NPR contest. They supplied the first and last lines and the story had to be under 600 words. To read other entries go to: http://www.npr.org/series/105660765/three-minute-fiction

Enjoy!

Some people swore that the house was haunted. Most still do. They’re right. I should know. I'm the one who haunts it. Although I know the whole rattling around the house by oneself thing sounds lonely, I really don't mind. Most of my life was spent alone, so why should my afterlife be any different?

Actually, all the time alone is probably the reason I'm still here. So much time spent in this house. I think I became bonded to it somehow. After the fall down the stairs, I expected to go somewhere. I don't know where. Maybe someplace with bright lights and harp music. But instead, I'm just here. The same place I've been since I moved in 37 years ago.

Don't get me wrong. It's not that I was agoraphobic or anything. I did leave the house. Just not very often and usually not for long periods of time. I went to the grocery store to pick up the food I had ordered. To the library to check out the books I had reserved. To the local diner to get the meal I had ordered to go.

So this house became my life. And now my afterlife is this house. I am bound to it. Couldn't leave if I wanted to. Don't ask me why. The expected magical answers never appeared. I wasn’t given a Handbook for the Recently Departed.

I hadn't been dead long when the house went on the market. I knew it wouldn’t stay there for long. A real estate agent showed the house to numerous people who seemed unimpressed. Then to a nice older gentleman who was quite interested. What if he moved in? Could I handle living with someone after all this time alone?

The next week, my fears were realized. The realtor’s sign that was stuck in the yard disappeared one day and a moving van showed up the next. I appraised every piece of furniture as it came through the door. At least this guy has good taste, I thought. Antiques and solid furniture. None of that flimsy IKEA stuff.

Despite my apprehension, over the next few months I adjusted to having a roommate. To my total amazement, the companionship was kind of nice. If you could call it that. It's not like we talked or anything. However, I could tell sometimes he thought he wasn’t completely alone. He would occasionally get a chill when I passed by and he’d look around or call out to the empty room, "Is someone there?"

We lived together, mostly unbeknownst to him, for three years. As it turned out, he was a homebody also. He didn't watch much television. But, he had a huge collection of blues records which I grew to love. He spent hours reading. Sometimes I peeked over his shoulder but it seemed to make him uneasy.

Halfway through that third-year, the man returned from a doctor's visit. He dragged through the door. Apparently, he hadn't received good news. Over the next few months, the man grew feeble. He took pills for a while but they only seemed to make him sicker.

One night as I watched him, he began to gasp. I moved closer. He looked at me. "Are you an angel?"

"No. I don't think so. You can see me? And hear me?“

"Yes," he replied. "What happened?"

"I think you're dead. I guess I should welcome you."

I explained what I could, which wasn't much. He took the news surprisingly well. Almost as if he had been waiting for it.

Nothing was ever the same again after that.

Long time no blog

Hey everyone, just a quick note to say we're still around and hope to be making more frequent updates to the blog. Decided to make this about whatever we feel like at the time, Courtney will be putting up some pictures and videos, and who knows perhaps if you beg her she'll start putting up some of her fiction writing......

Until next time, farewell, and welcome back.

-John

What's up: A Brief

Well it's been a while since my last post, and if you’re anxious for another lengthy diatribe I’ll apologize in advance. This will have to serve as an appetizer to the main course to come in a few days.

Courtney is doing well, going through a 3-day treatment of steroids a couple of months ago seemed to calm her latest symptoms, no more dizzy spells, the ataxia in her right hand is way better, and according to the neuro visit on Thursday her right leg is stronger than it was last visit (no surprise as she was having an exacerbation last visit).

About 6 weeks ago we found a new rent house which was just a few doors down from some really great friends, cut my drive to work in half, and put us about 15-20 minutes away from all our old college friends. After a month of packing and a couple of weeks of moving we finally are in the new house, mostly unpacked, and loving it! We’ve had more visits from friends in the last 2 weeks here at the new place than we did all of last year it seems…..kinda nice being closer to civilization again!

No news on the CCSVI front, we’re still on a waiting list for a Dr. As of now Court is back on the daily Copaxone shots, is doing her stretching exercises and riding the recumbent bike every day.

We’re doing well, loving life in the new house. Still have some unpacking to do, but once we get fully settled I’ll be back with regular posts for your edification.

BTW, we’re planning on having a house warming party/bbq on Saturday July 3rd. Any and all are welcome to drop by, just shoot me an email and I’ll send you the directions 

Cheers,
John

Live Web Conference - What do we know about CCSVI with a star-studded cast

Today was an important step forward in the education of the masses in regards to CCSVI.  At 12pm EST there was a live web-cast sponsored by the National Multiple Sclerosis Society and American Academy of Neurology, with a panel that included: 

Dr. Paolo Zamboni, Director, Vascular Diseases Center, University of Ferrara, Italy

Dr.  Robert Zivadinov, Associate Professor of Neurology, University of Buffalo, State University of NY

Dr Andrew Common, Radiologist in Chief, St Michaels Hospital, University of Toronto, Ontario, CA

Dr Aaron Miller, Professor of Neurology  & Directory of the MS Center at Mount Sinai, NY

There was a live audience of members from various news and print media organizations, and it was broadcast internationally over the web.  The session was moderated (quite well I thought) by Jay McBride.

Its a little under 2 hours long, you can watch the recorded webcast HERE.

Overall I was quite pleased with the webcast.  There were some very interesting facts put forth, and at times the tension was quite visible.  Once I’m able to go back and watch it again I’ll try and dissect some of the specific comments made, but for the time being here are the highlights:

• Dr Aaron Miller was not dismissive of CCSVI, he absolutely said it’s an avenue or ‘lead’ that should be followed.  He talked about current MS therapies and how they have shown for years to help MS patients and that he did not think MS patients should be abandoning their current therapies for CCSVI diagnosis and treatment.  Dr Miller mentioned a couple of times that the MS society was going to be funding new studies into CCSVI (to be announced in June), and that work in these studies should be starting in July.

• Dr Zamboni talked about his studies to date, and some of the studies they are currently working on and hope to get started with soon.  He talked about CCSVI, what it is and how they are diagnosing it.  One of his slides displayed percentages of MS patients vs healthy controls that have tested positive for CCSVI in various geographical regions, which was overwhelmingly supportive of a MS-CCSVI correlation globally.  He took a very aggressive question on the relation of iron deposition to MS and other diseases like Parkinson’s and Alzheimer’s, and from my non-medical background seemed to knock it out of the park – actually looking a little aggressive himself which was nice to see.  He expressed concern at patients getting treated without the right doctors and proper procedures being followed, yet made a heart-felt plea at the end for Neurologists to use compassion in working with IRs to help patients who have no other treatment options.  Multiple times he talked about angioplasty being safe, and repeatable, that the Azygos vein responds extremely well to ballooning and that the position of the jugulars could very well present other treatments options (more traditional surgery perhaps) if restenosis keeps happening.  Overall I think it was his best presentation to date and will easily be the most viewed in a relatively short time as many reporters as there were there.

• Dr Common talked more about Interventional Radiology itself and the venous system.  It was a good balance and very informative as many MS patients and families will have more limited understanding of this anatomy.  He has not treated any patients for CCSVI, but is getting many calls by MS patients to offer the Liberation Procedure.  He shared some of the potential complications of angioplasty and stenting (actually made an interesting comment, saying the one patient who had a stent migrate to his heart didn’t need to, but had open heart surgery….the didn’t need to part was a first I’ve heard on this individual case).  I don’t think Dr Common was asked to provide much more info than he did, but it was a nice job talking about the venous system in an easy to understand way.

• Dr Zivadinov’s presentation was perhaps the most interesting and I won’t comment much on it here as I’ll dedicate an entire post to dissecting some of the numbers and information he presented regarding the BNAC studies.  I will say Dr Zivadinov was very adamant about patients not flying all over to get treated just anywhere, that at the least it should be under IRB watch and done in coordination with a Neurologist.  Keep in mind that Dr Zivadinov is a researcher, and he understands what needs to happen for the CCSVI-MS link to become accepted medical knowledge and it’s controlling this early treatment of patients to make them factual as opposed to anecdotal evidence and I applaud his advice.  Again, another post on his presentation to come later.

There were over 7000 questions posted by online viewers….wow.  I think this will be the media breakthrough the MS community has been looking for in CCSVI awareness.

Anniversaries, Tikka Masala and CCSVI

Well I’m chomping at the bit to get our CCSVI escapades here on virtual paper for everyone, but have to take a short detour as today is our 7 year wedding anniversary.  That’s right, 7 years and Courtney hasn’t kicked me out yet so I must be doing something right.  It certainly isn’t my prowess in lawn care or Anthony Bourdain-like taste buds keeping me in her good graces (I hate yard work and have the palate of a 3^rd grader).   I put together a little slideshow (right) with a handful of pictures of the two of us over the last seven years….I’ve gotten balder, she’s just as gorgeous as the day we were married.  Not fair, but I’m definitely not complaining! 

So to celebrate the occasion I took my first stab at homemade Indian food.  A nice Grilled Chicken Tikka Masala with a curry and cinnamon basmati rice.  I must say, the third grader in me even liked this tasty dish, and boy did it put a smile on Courtney’s face.  I think I counted 7 ‘thumbs up’ over the course of dinner as she was unable to give her mouth a long enough break for verbal applause.  Success!

Another anniversary in the books.  It was a good day, no falling, only a couple of dizzy spells, lots of laughter, great company, awesome food and a genuine appreciation for each other.  I couldn’t ask for more as Courtney naps and I relax in our new/recycled/extra comfy recliners donated by a good friend.

OK.  Lets talk about CCSVI.

I’m not going to go into the nitty-gritty details of what CCSVI is and the science behind it in this post (there are links to research and CCSVI specific websites on the right if you want to get granular).   Instead just want to share our experience so far and where we currently stand on the topic.  For those unfamiliar, CCSVI, or Chronic Cerebrospinal Venous Insufficiency is a relatively new disorder in which the veins that drain the blood from the central nervous system to the heart are compromised (narrowed, blocked, malfunctioning), causing a reflux of blood back into the CNS.  This reflux over time leaves deposits of iron….Iron is toxic at high levels and is known to cause cell death, inflammation, and is just in general a very bad thing to have building up anywhere in the body, much less the brain and spine.  There are studies currently underway on a global scale to understand the true relationship of CCSVI and MS, how to best test for CCSVI, and a whole host of other related threads.  Make no mistake CCSVI is real, it’s a recognized/defined condition by the International Union of Phlebotomy.

Regardless of whether there is a causal relationship, it’s already a well documented fact that individuals with Clinically Diagnosed Multiple Sclerosis are showing an extremely high incidence of CCSVI.  Like many other MS sufferers and their caregivers, we wanted to get Courtney tested and if there was a stenosis or malformation in these veins draining the blood from her CNS we wanted to get them fixed.  If she broke her leg we’d want to get that fixed too, regardless of MS.  MS aside, if her veins were ‘broken’ they need to be taken care of if possible. 

So, last November I started the process and contacted Courtney’s Neurologist.  Dropped off physical copies of everything I could get my hands on including the Zamboni studies, imaging protocols to test for CCSVI, some of the anecdotal reports from already treated patients.  The Dr didn’t call me to talk, instead giving the infusion nurse (did I mention there is an attached infusion clinic at this private practice) a message to deliver me, saying he had looked over the material and if there was anything else I wanted to drop off to feel free.

Undeterred I started reaching out to Interventional Radiologists, Vascular Surgeons, Neuro-radiologists in hopes of getting an appointment…..to no avail.

Finally we decided to talk with Courtney’s GP, who ended up being very supportive.  She has been Courtney’s Dr since before the MS and is one of the few Medical Professionals who seems to understand our sense of urgency.  She without pause wrote us a prescription for an MRV, and left it to us to find the right imaging center (knowing we required certain equipment).  With a script in hand and the help of another MS patient who is also trying to get treated for CCSVI, we were able to get an appointment with the head of Interventional Radiology at a local University Hospital.  Courtney had her MRV on Feb 23^rd, with her follow-up appointment on March 23^rd to get her scan results…..talk about a long 4 weeks.

The day came with much anticipation.  It’s hard not to let the hope build up when you care for someone with a currently incurable disease, and this whole experience is teaching me the importance of managing that hope with tempered skepticism.  Its kinda like buying a lottery ticket….you know you have in your hand a chance at something that could change your life in a hugely positive way.  Ticket in hand you dream of what you’d do with an obscene amount of money….buy an ‘insert shiny new toy here’, set your friends up for life, imagine what it would be like to NOT have to worry about money…the thing that lottery ticket would fix.  That’s exactly what the ‘CCSVI’ ticket did to us….we were imagining what it would be like to NOT have to worry about MS…the thing that the CCSVI ticket could fix.

The Dr was really very nice, seemed to have a genuine interest in CCSVI, yet was reserved.  He proceeded to tell us that Courtney’s MRV showed stenosis in two different locations, in both internal jugulars; however, he had seen similar in another patient (the only other MS patient he’d seen) and when he went in for venography two months after the MRV the stenosis was gone.  This led to an immediate impromptu ultrasound.  The ultrasound was informal with no particular protocol followed, he just wanted to see if the narrowing was still present.  Courtney’s jugular’s measured 0.97 and 1.12 mm in diameter while laying supine and breathing normally.  I’ve been told by 2 other doctors that the normal diameter of the IJV in the supine position is 8-12mm, so Courtney’s veins were absolutely nowhere near normal.  The Dr had her do what’s called the “valsalva” maneuver, where one holds their breath and exerts pressure (strain).  Doing this caused Courtney’s veins to dilate back to the normal range, but when she stopped exerting pressure they went right back to 1mm.  This Dr’s position is that without a ‘fixed’ stenosis he didn’t see any problems with the veins.  He didn’t check for reflux or any of the other indicators of CCSVI, and basically just turned us back over to the Neurology department.  You see, we also go to the MS Clinic at this hospital and the head of the Clinic is not on-board with CCSVI and has told me in writing that at this point in time he could not recommend venoplasty for any of his patients (although he reserved the right to change his mind).  Did the Neuro put the stop on the IR doing anything with patients from their clinic?  Considering what is going on at other locations around the US it wouldn’t surprise me, but would be speculation.

Needless to say we were both crushed and confused.  On one hand we had confirmation of narrowed veins, but then the Dr saying nothing was wrong with them because he couldn't find a fixed stenosis.  That was definitely a tough day.

So, now we have both MRV and Ultrasound images that show a problem but still need a Dr willing to go the next mile and do a venography to really explore the root of her narrowed veins and test for flow issues.  We’re on the waiting list for scheduling to see a Dr, he seems to be a brilliant man who has spent his entire career helping those who need it most.  He is taking the time to personally connect with the MS community and share his knowledge and experience.....no small thing considering how controversial this topic is right now.  The wait may be 6-12 months, we just hope for treatment before any more progression. 

In the meantime, the hope is for the MS-CCSVI link to be proven, and that all the other MS patients around the world are able to be treated in a timely, safe and effective way.

First Things First

Where to start…..at the risk of sounding like a newbie at an XY Anonymous meeting…

Hi, my name is John, and my wife has MS.  I’m compelled to share our story in many hopes….in hope that it can bring a tad more attention to the fight MS patients and their families go through every day, in hope that it can help others dealing with this dreaded disease, in hopes that it can help me think through the challenges we face and make the right decisions, in hopes that it can show other caregivers they aren’t alone in their fears and that the cross we bear is one of love not disease, and that it’s our love that pulls and pushes us forward.  There are so many things I want to talk about, but first, here’s our story.

It was love at first sight.  I was working in a kiosk at the Golden Triangle Mall in Denton, TX one afternoon 13 years ago when this incredible girl passed by.  She was wearing a camouflage t-shirt that let her shoulder tattoo barely show under the sleeve, ripped up jeans, short dark brown hair, and had the most beautiful smile I had ever seen.  She was smiling at me.  About a half hour later she stopped by my place of work and there was the ever so awkward moment of sales clerk trying to help a customer who didn’t really need help.

I kicked myself for days not getting her number.

She wouldn’t get out of my head, all I could think about was this woman I saw at the mall, and my friends were definitely tired of hearing me talk about her.  Little did I know she was at that same time telling her best friend she saw the guy she was going to marry.  Luckily Denton, TX is a fairly small college town and it didn’t take long for us to run into each other again, this time she was with someone that knew me who drug her to my kiosk and made an actual introduction.  Courtney…. I now had a name to dream about along with the face.

Still no number, and I was yet kicking myself again.

You see, although I sometimes pretend otherwise, I’m really quite shy, and it wasn’t until about a month or so later with the assistance of copious quantities of alcohol that I was brave enough to approach her at a bar I frequented (where she happened to be on a blind date..ha!) and got her number.  I believe the line was “If I let you get away again without getting your number, I’ll have to kick my own ass”……although I bet it sounded more like “Ish I vet you geet away again wishout hetting your number I’llll have to kish own ash”….I’m surprised she answered when I called.  She did, and we’ve been together ever since.

We’ve had many wonderful experiences over the last 13 years, with our 7 year wedding anniversary coming up on April 13^th as a reminder of one of the best.  Although life was kind enough to put us in each other’s paths, it isn’t always kind.  2006 saw Courtney starting to experience some balance issues, which we explained away as being tired or perhaps a bit out of shape.  She’s a photographer you see, and if you’ve never shot a wedding before you don’t realize the toll a wedding photographer's body goes through.  I assisted as a second shooter a couple of times and was crying like a baby the next day complaining how sore I was.  It seemed legit, it’s a taxing profession, and her balance wouldn’t get bad until towards the end of the weddings. 

Well, it continued to get worse, and we couldn’t explain it away anymore.  She had tingling in her right hand and a bit of numbness, her right leg was showing signs of foot drop (we didn’t know what that was back then), she had been experiencing bladder evacuation problems for a long time already, and the wall-walking was beginning.  After two sets of MRIs (3 days apart) and EVP testing she was diagnosed with Relapsing Remitting Multiple Sclerosis.  We had her tested for heavy metal poisoning and Lyme as well, both of which came back negative.  Lumbar Puncture was offered as a final confirmation of diagnosis, but she was very afraid of the procedure and we were told it wasn’t necessary to clinically diagnose her (not to mention she had a wedding to shoot the day after they wanted to do the LP).

Over the last three and a half years, Courtney has slowly progressed in disability, going from wall-walking to a cane and now to a walker (which still hasn’t stopped her from falling at times)…….this progression in spite of using MS drugs like Copaxone and Tysabri.  She has the common MS bladder issues like urgency, not being able to fully evacuate, having to get up 5-6 times a night.   Spasticity is pretty bad in her right leg, sometimes even popping up like a Pink Flamingo when she’s trying to take a step and locking into that position.  Lately she’s been having dizzy spells many times a day along with slight slurred speech (try saying that that 5 times real fast!).

No matter the challenges we face them together.  She bears the brunt of the disease, I try to make it bearable.... the best I can.  I used to wonder what our life would be like without MS, now all I really care about is that we’re together, and doing the best we can with the situation we’ve been dealt.  Don’t get me wrong, we’re fighting this thing tooth and nail, and in the days to come I’ll be sharing our current journey into CCSVI diagnosis and hopeful treatment.

Thanks for reading, and please come back……I have so much to talk about.