Insanity vs. Inanity

This is just ludicrous. I didn’t even realize the amount of stuff I was polluting my body with. I worked so hard to remain as objective as possible through–everything–that I stopped caring about being poked and prodded and just started to think of my body as a (broken) machine and was a compliant patient. Through it all. Now I find myself no longer beholden to Big Pharma. For now; the truth is, at the moment, there is nothing to modify the natural course of this disease. My disease. Realistically, I will likely need to resume treatment. But not tomorrow… Insanity meets inanity in this post!

 

I would like for all to know that while my information is accurate, I am in no way a medical professional. Further, MS as it was just covered is specific to me—we all have our own unique biochemical footprint.

My name is Andrew Durso, I am 30 years old. In 2007, I was diagnosed with a chronic, lifelong illness—Multiple Sclerosis (MS). I was counseled by my Neurologist to choose between 4 medications— Copaxone, Rebif, Avonex, and Betaseron (the only available first-options at the time, known as the C.R.A.B. drugs). What did I know of such things? My decision was thus based entirely on the method of administration and my relative comfort level with injecting myself. Thus, my options became: a subcutaneous injection (known as ‘SQ’, frequently referred to as ‘Sub-Q’, or under the skin) every day (Copaxone), a different Sub-Q injection 3 times a week,  an intramuscular (IM) injection once a week (Avonex), or a a subcutaneous (SQ) injection every other day (Betaseron).

I settled on Rebif. My disease progressed quickly. Within 8 months of my diagnosis, I was confined to a wheelchair. Six treatments and two surgeries later, the most incredible thing happened to me.

As of March 1, 2013, I have not consumed a single pharmaceutical product. I have instead been medicating exclusively with Medical Cannabis. I purchased a battery operated, portable vaporizer to facilitate consumption. I asked for and received a medical exemption to purchase, carry, and possess marijuana.

Please understand–I have a great job. I have an amazing family. I thought my days with pot were behind me. But this is no longer high school. It is a FACT that I am enjoying good health right now. Understand: I don’t want to get high. I’m sick and need to medicate.

I now consume Medical Cannabis for all that stuff that I was taking those 20 pills a day for. And, for me, it works.

 

 

Medcation History:

Prescribed:

-Baclofen – 10 mg tablrets 4 times daily (to control spasms, medical cannabis achieves the same effect)

-=Clonazepamn – 0.5mg pill 2 times daily (for tremor control – medical cannabis achieves the same effect)

Detrol L.A. – 4 mg capsule 2 times daily (to calm my overactive bladder muscles – medical cannabis achieves the same effect)

Treatments:

Rebif – 44mcg injected 3 times weekly (interferon 1a)

Tysabri – infused in a infusion centre. Dosage is based on weight, every 4 weeks

Mitoxantrone – chemotherapy1 agent used primarily to treat leukemia, 1.5L infused at hospital every 4 weeks.

Cyclophosphamide – chemotherapy1 agent used to treat various Cancers, 1.25 infused every 4 weeks for 3 years with future regimen of ever 8 weeks.

-Current intent is to resume Tysabri.

Surgeries:

-CCSVI venoplasty

-Open brain surgery and installation of Neurostimulator for tremor control

Over-the-counter (OTC):

3.1,000 IU Vitamin D twice daily

4.350 mg of Calcium Citrate or 500 mg of Calcium Carbonate twice daily

7.1 horse-pill sized multivitamin

8.Omega-3-6-9 capsules (containing 400 mg of EPA and 200 mg of DHA thrice daily

 

1                   Chemotherapy always indicated or use with steroids (1L of Solu-Medrol delivered via infusion and unknown quantity of Zofran (anti-nausea drug delivered via infusion.

Andrew Durso
Vice President
Tristan Williams MS Foundation (TWMSF)

Resources:

Neurology-2003-Goodin-1, obtained from http://www.neurology.org/content/61/10/1332.full.pdf‎
MS Society of Canada_ available at http://www.mssoiety.ca

 

 

 

 

 

 

 

 

That episode of The Simpsons where Homer was interviewed on “Rock Bottom”? (S06E09)

Did you watch it? If not, please take a moment of your time and watch.

http://bit.ly/ljuz66 <– advance to time index 11:05, and enjoy.

What did you take from those 2:30? That it’s difficult for me to make a sandwich, that I said the words “loosey-goosey-willy-nilly”, and that I am happy CCSVI Trials are coming to Canada, though I’m a little worried that I may not meet the inclusion criteria (e.g.: the trial group will be made up solely of Relapsing Remitting—RRMS– patients, and my diagnosis will have been changed to Secondary Progressive—SPMS– by that time). Where it strays off the trodden-path is that this trial doesn’t involve a drug and is not being funded by big Pharma. This is unknown territory for me, which is only now bringing me to the realization that my recorded comments vis-a-vis being the “magic level of handicapped” may have been kind of irrelevant.

The CBC contacted me via e-mail the night before they ‘filmtroviewed’ me. I had to be up early the next morning so that a jovial and friendly nurse could practice her ‘pokey-stabby’ (thanks again for that one, Cat) and fill a little cylindrical container with blood, ensuring that the right balance between immuno-surpression and overall health is being achieved; nobody’s trying to kill me – though that is sometimes how it feels as I’m retching over my toilet, doing my best to avoid splashing vomit on the toilet rim, streamlining clean-up into a flush and brushing my teeth (and palate…and cheeks… and gums…and tongue). The intention is instead to dampen my immune system in an attempt to hit the “off” switch on my disease. But flipping that switch comes at a price; and yes, I ask myself everyday whether I should keep it up, or whether I should just give my body a break. I am coming up on year 3 – it sure feels like it may be time.

On point – I didn’t take much time to prepare, but did think the breadth of knowledge that I have been amassing with varying levels of intensity for my whole life (seriously – my Dad has MS. remember?) would carry me through without problem. From the feedback I’ve received (though all from people I’m close to), I did ok. Right until I said that block of four words that have now been immortalized by the CBC, that I received a string of ball-busting text-messages regarding, and that my brother-in-law will never let me forget.

“Loosey-goosey-willy-nilly”. The way it was portrayed in the interview makes it sound like I was making disparaging remarks in regards to Costa Rica (and therefore Passport Medical, the medical tourism company that arranged my trip -and yes, it was expensive, but they provided a service: a surgery somehow paradoxically performed on a daily basis yet not available domestically to me). In the end, my family, my friends, and I decided to go for it – I said yes and everyone I know, a bunch of people I didn’t know until we shook hands at one of the fund-raising events hosted by my friends and family showed their agreement and support as well by helping me to afford the burdensome cost the trip would incur. Despite any misgivings I may have had about venoplasty as a treatment for MS, I recognized the limited options I had remaining and chose to give ‘er (as we say out West), going in with no expectations and a lot of hope. My experience was non-miraculous. Medically, you would call it “unremarkable”. But at least I tried.  Upon my return home, three months post-op, what I feared would happen happened; my general practitioner (GP), who I had ensured would agree with what I was doing before I went down so that I at least had a professional to assist with follow-up care, has done everything I’ve asked him to, but is limited as to how far he can actually take it. He’s great at writing papers for referrals to imaging labs so that I can have follow-up scans done, but the Québec College of Physicians has instructed any and all imaging labs to disregard requests for scans from MS patients pertaining to CCSVI. To this day, seven months postop, I still have yet to have follow-up Doppler ultrasound done. There could be a clot floating around in one of my jugulars, but because I traveled abroad, or maybe because there’s not enough empirical data on the procedure I had done, or perhaps just as I have really shitty luck – all four imaging labs I contacted in Québec refused to provide the scan I needed.

At first, I was a little upset with the CBC – I said many intelligent things, anyone who reads my blogs knows that I’m not lying. I said one thing that made me come off as a NASCAR fan, and what makes it into the piece? Oy…

I understand why it worked out that way. Nobody likes to feel like they’re in some sort of English class when they’re watching the news. I guess “Loosey-goosey-willy-nilly” gave it a little bit of flavour. Just to clarify though, that comment was in reference to the fact that ANYBODY could have the procedure done overseas, whereas in Canada, we are far more stringent in the selection process for procedures of this elk.

Just to contextualize for y’all… I was in no way making negative statements about my experience in Costa Rica, Passport Medical, or even the procedure itself. There is much that is yet to be discovered about virtually everything involved in the pathogenesis of MS. This is one road, one avenue, that I think needs further study, and less immediate dismissal by the medical community at large.

Keep cool, the summer heat has finally arrived!

-A.D.

2011 Starts Now

And 2011 quietly came to be as I studied my last MRI from Oct-2008 in one window while trying to establish precisely where my motor cortex is (if you’ve ever had an MRI done, you understand that it’s simply ‘slices’ of whatever part of your body is being scanned–in a typical MRI for MS patients, they ‘image’ your brain, cervical spine, and possibly portions of your spinal cord), while in another window, I’m trying to teach myself what the heck it is that I’m looking at. All this because I want to know. I must know; so rarely will a medical professional be completely candid with you as a patient, and understandably so. Somewhere in the ‘do no harm’ part of the Hippocratic Oath that these women and men have taken, doctors, neurologists, radiologists, whatever specialist it is that you’re seeing for whichever of the multitude of maladies that may be aligning to affect your ‘everyday’ wants to avoid eliminating hope; hope of a life free of medication. Hope for a life free of degradation. Hope for a life free of the kind of ‘wonderful’ that we, the sick, are living as we descend further to infirmity. Hope…

But all I want is balls-out-honesty. The only doctor that has ever even come close, oddly enough, was Dr. Freedman, who, when looking at the very same aforementioned MRI, intimated that walking may be a thing of the past for me. For all the bad press he’s been getting from we pwMS, repeatedly asking for his resignation, citing ‘conflicting interests’ between he and the drug companies that bankroll his research, may, in the end, turn into a ‘we-shot-ourselves-in-the-foot’ situation. The man is a brilliant Neurologist who has helped many people and whose aim, regardless of where the funding came from, was to help as many as humanly possible. Somewhere in the craze that came with CCSVI, brought to light in a reprehensively irresponsible manner by thw CP/AP, releasing poorly controlled clinical trial data before the proper research channels had been gone through, setting off a spark of an idea that we needed to mobilize and force a paradigm shift in how MS is looked at and treated, and by which specialists under which disciplines are to be considered the ‘go-to’ people–a radical change in the ‘status-quo’–but one that, to me, seems premature.

Having said that, let there be no confusion — I am still a proponent of venosplasty as a potential treatment for MS. I myself have undergone procedure. In my case, there were no miracles. I was not jumping up out of my wheelchair and walking — not the next week, not the next month. But there is something there, something that science, in time through proper study, will prove that Dr. Zamboni’s theories are correct. During my two-week trip to Costa Rica, where I had the procedure done, I did see some pretty remarkable improvements from some of the patients that were down there. I can’t explain it; I’m no doctor, I’m no neurologist, and no radiologist, I’m nothing that ends in ‘ist’. What I am is some events in ‘ent’ — a patient. Patient whose options were running thin. So after a string of fundraisers, an outpouring of support from a multitude of different people, whom I will never be able to thank appropriately, I sought this treatment, going in with no expectations, and lots of HOPE.

And the work has only just begun. I’m in the middle of assembling the videos of the physical therapy I was undergoing while down there, and I’m currently seeking a physical therapist that will mirror those exercises with me. At the same time, I’ve been doing a lot of research on modifying my diet to better ‘fuel-my-tank’. I have people helping me with this, but I think it may turn into the most difficult part of my recovery; access to the kinds of food that are most beneficial to me is spotty at best. But I will prevail. I know I will.

The question that plagues me, however, is how, how on earth can the neurological deficits that have been brought on by this evil disease be repaired? Is the answer in neuroplasticity? Can my brain rewire itself to use portions that are undamaged to do the things I used to?

I don’t know. I don’t have fancy title, I have no group of letters at the end of my name, hell, I’ve got a high school education (I guess you could say some University — at the moment I’m rocking a 4.0 GPA as I’ve only taken one class, MDCM 200 – Media and Society in Canada – and did exceptionally well, if I do say so myself…).

But hope… it’s one thing I have in droves. Because even when it feels lost, someone’s there, friend, family, or even a stranger, to remind me of its importance.

Here’s hoping…

-A.D.

welcome home?

Some welcome home…

I leave a tropical paradise, heavily populated by women so beautiful they rival les belles Montréalaises, only to arrive home to what feels like 6 feet of that wet, heavy, good old Montreal snow. I couldn’t have picked a better day to land… c’est la vie! The first snowfall of the year is hard on everyone, all the more so on the day you arrive home from Costa Rica. Just my luck!

I’m sure everyone is on the edge of their seat, waiting for an update on my experience down South. And rightfully so; it was all of you that made it possible. Never in my life did I ever hope so forcefully that they would find something wrong with me! Good news; the initial Doppler ultrasound detected and 80% blockage in my left internal jugular vein (LIJV) and a 60% blockage in my right internal jugular (RIJV). Both my iliac (pelvic) and azygous (spinal cord) veins were obstruction free. Success! I was a viable candidate for surgery. Just as quickly as I got the news, I was on the operating table having my left femoral vein sliced open, a catheter inserted, and balloon angioplasty being performed immediately following the venogram — the venogram which provided a more accurate measure of the blockages in my veins; as it would turn out,  “during the procedure stenosis of 80% of the proximal segment and 90% at the distal segment of the right internal jugular vein were seen associated to reflux and slow flow. The left internal jugular vein presented an 80% narrowing. Dilation of these lesions was induced through the placement of a 18 x 40 mm Boston XXL Balloon and a 14 x 40 mm Maxi-LD Balloon. Improved vessel caliber, flow velocity and direction were seen following the dilation.”

These were the notes that were provided to me post-op. You’ll have to forgive me for the jargon, it really just seems easiest to copy and paste what the professionals noted. And while I’m no doctor, common sense dictates that they found something, something that was not right. And so, rightfully, they did what they could do safely to effectively eliminate the blockages – at least for now. The next step is to make an appointment with my general practitioner, and see if he is willing to write up a consult for me to have my internal jugular veins scanned in three months time to ensure that the blockages are still clear. In the interim, a pretty radical lifestyle change needs to occur; no more smoking. Anything. No more drinking. Anything – while I’m sure the occasional glass of wine wouldn’t kill me, the problem is that with me, it’s all or nothing. That being the case, the logical conclusion is to go with ‘nothing’. Because in this instance, that nothing could turn into my everything.

The days and months ahead are going to be hard. They are going to be filled with 7-day weeks where I will be exercising endlessly, trying to tone my atrophied leg and core muscles, all with the eventual hope that I can form new neural pathways to get my legs working. While it would have been great to come out of surgery with miraculous improvements, it just was not in the cards for me. I instead must keep working, keep pushing, and follow the advice of the medical professionals that treated me in Costa Rica.

To my surgeon, Dr. Diaz, to the physical therapy team that treated me post-op (Andrea, Sofie, Claudio — who I have affectionately nicknamed ‘the Hulk’), to the nursing staff who played nurse and psychologist and babysitter for many of us (Beverly and Javier), and to all the fellow Canucks who were down there with me, both those being treated, and those accompanying those being treated, I will never find words to properly express my thanks.

Lastly, to my sister Rachel, and to my brother Olivier, I owe you two a debt of gratitude that I will never be able to repay. I could not have done it without both of you. And it’s not over yet – in the days ahead, I will likely be turning to you for further support.

I said at the beginning of all of this that it was going to be an effort where many small parts make up the whole. I keep adding more and more parts… now it’s time to find the whole.

-A.D.

A truer measure

I finally got a few minutes to put proper blog posts together… so indulge me if you will.

You’ve all read this point that the surgery went off problem free. While there have been no immediate improvements, I honestly do feel that it’s only a matter of time before I begin to see some amelioration in my condition. The trip is about more than just venous angioplasty — it’s about hard physio- harder physical therapy than I’ve ever undergone in Canada. It’s about creating a new support structure, one replete with people going through the same things as I am. And what came as the biggest surprise — it’s about learning when to ask for help, even though I don’t want it, and even though I don’t think I need it.

Most people reading this know how pragmatic I am; my atheistic views on life are an example of that. That’s not to say that I’m devoid of any sort of spirituality, I just have a hard time believing in a deity, at least one that controls life as we know it. And if there is one, well… I have some choice words for ‘it’. I don’t know if the surgery will have any impact on my condition. But if ever I were to try something such as this, even with minimal risk, I think best to do it for the disease takes an even stronger hold on my system. And that’s why I’m down here – to try. I tried Rebif, a first-line treatment for MS. It did nothing but leave me feeling like a bag of crap on days posts an injection, as well as leave the area around my belly button littered with bruises from the self injector. I tried Tysabri, only to have a neurologist (Dr. Mark Freedman as matter of fact) suggests that I discontinue that and instead began treatment with the chemotherapy drug used to treat leukemia. The chemo drug, as a third line treatment, was the first one that had an impact on my disease course, and though it didn’t make it any better it’s certainly stopped in its tracks for about 27 months that I was able to take (that is the maximum allowable). So drug one didn’t work. Drug two, though not given much of a chance, likely wouldn’t have had much of an impact either. Drug three hit the pause button on the progression but did nothing to make me better. But this treatment, this venous angioplasty, at least as in the protocol laid out by Dr. Zamboni, has had positive impacts on so many people. The why is still kind of up in the air; are strictures in the jugular/azygous veins really and truly the cause of this insidious, crippling, progressive disease? We don’t know… but I was desperate enough to give it a shot.

Some good will certainly come of this, even if not to my disease, its progression, or its impact on me; the blood thinners that I’m going to be taking for the next month will keep me from drinking. In the very least, there is a silver lining there. But exactly how this is all gonna go down is still one giant question mark. I beseech you all stick around and see what comes of it; at least in my case.

A big part of me being here came from a string of fundraisers. Each and every person that donated wants an answer to the same question I do. And while I was sad not to have immediate results, I believe they will come. I’m back in the hospital Wednesday for a post-op Doppler to ensure that the angioplasty was effective in clearing the blockage. Stay tuned…

-A.D.

The ‘omfg’ stage…

And wouldn’t you know it…5 days prior to my departure, CCSVI, the ‘Costa Rica option’, and Passport Medical have been mired with the saddest possible outcome to the same frantic desperation with which I am seeking endovascular therapy; Mahir Mostic, a pwMS whose case could not have been all that different from mine, has died due to complications from what is misinformatively being referred to as ‘The Liberation Treatment’. It’s sad. And while details are emerging on where the disjunct occurred, on what went wrong, at what level and why, I am sure, sure as I’ve ever been of anything, Mr. Mostic’s death was not entirely in vain.

Any that have been following my blogs may remember one titled ‘Balloon Party‘  where I expressed concerns over some of the same things that played into this tragic story; follow-up care, getting better only to get worse, and what my reaction would be. If faced with the same circumstances, would my decision be any different? Would I book the next flight I could back to Costa Rica and open discussions about stenting my blockage?

I voiced a rather aggressive stance on that question… but much like many things in life, what’s written on paper and what occurs in practice are often two very different things. While I would like to think that I will hold fastidiously to what I had previously stated, the sad truth – I have no idea. I have no idea how I would handle getting better only to get worse.

Life and death… complete opposites. But what they have in common; they can both be cruel and unusually unfair. I have done my due diligence. I have a doctor that has agreed to provide follow-up care. I know there is a imaging facility in Montreal that is capable of doing a Doppler/MRV/venogram, should I need it. I know Dr. Sandy McDonald in Barrie is trying to help as many people as he can. But if/when I experience complications/restenosis, will I have the strength to avoid making the same mistake?

I guess we’ll find out… I leave on Wednesday. Wish me luck… I will most certainly be doing my best to keep everyone up-to-date through further blog posts as time allows.