A Rare Condition - SDAVF

If you have numb legs and/or feet and your doctor can't figure out why, consider an arteriovenous malformation (AVM). An MRI with contrast die is the diagnostic tool for this.

It's been a loooooooooooooooong six months. In the spring I was diagnosed with benign prostatic hydoplasia as a result of an ultra-sound and lower spine x-rays. In May I had a pretty significant fall on my dock which bruised and numbed my right leg and foot. The numbness continued and was also noticeable in my left foot. In June I first noticedwhat I would call 'wobbly legs - very occasional unpredicatable muscle behaviour which would affect my walking. I also found kneeling awkward. By the end of June my legs and feet were numb but super-sensitive to touch and temperature. A wet dog rubbing across my legs felt like hot oil being splashed. The numbness and weakness continued to increase and by July 1st I was using a cane to walk.

Another visit to my family doctor resulted in a consultation with a neurologist, a urologist, and an MRI of the lower spine. These consultations took their course and eventually I went to St. Mary's of the Lake hospital for conduction tests - the tests ruled out peripheral neuropathy and pointed higher in the spine. Meanwhile the urologist was checking out the bladder and prostate and could find no problems other than a lack of 'sensation of fullness'. I could have told him I was numb without him putting two litres of fluid in my bladder.

Several appointments with the family doctor and another consultation with the neurologist resulted in a die-enhanced MRI of the entire spine and brain. Within hours the problem was found. A spinal dural arteriovenous fistula is causing congestion of blood around my spinal cord. The list of symptoms describes me exactly and the MRI clearly shows the congestion of the cord. Everyone was ecstatic because this condition takes, on average, two years to successfully diagnose. Prompt diagnosis and treatment can mean full recovery.

I got an appointment within three weeks at Toronto Western Hospital for a catheter angiogram and, if possible, embolization of the artery by 'The Glue Man' Dr. Karel terBrugge. Unfortunately, the fistula is in the artery connected to the main artery serving the spinal cord and embolization is not safe because of the high risk of paralysis. Under most circumstances, a surgeon would then , within a few days, tie off the offending vessel with the same result. Unfortunately, in my case, both surgeons who could perform this surgery were out of the country so home I went.

Two weeks later the surgeon's office called with an appointment for a consultation two weeks later and then surgery sometime in the future. This is frustrating because the fistula was found much earlier than usual and my condition continues to deteriorate as I wait for treatment. In early November everybody was high-fiving about diagnosing the problem and it now looks like treatment may be delayed for three months.

The main purpose of this post is not so much to inform family and friends of progress but to create an internet presence of my experience for the benefit of others. When I was googling numb legs and other symptoms, I never once came across a mention of SDAVF or spinal dural ateriovenous fistula - if I had, I would have gone running to my doctor insisting on a full MRI. Promptness of diagnosis and treatment is crucial to complete recovery. This condition is very rare and not likely on your doctor's list of things to consider.

If you are suffering numb feet, numb legs, arms, hands, hypersensitive skin, numbness to the midsection (especially when sitting), lower back pain, aching hips, difficulty walking, difficulty lifting your feet - ask you doctor to consider an arteriovenous fistula. Although these symptoms may not appear all at once, they will get progressively worse and only treatment will put an end to it.

I would be happy to answer questions and hear your comments.

Bell Mobility Update

Call me crazy, but I LOVE MY HTC TOUCH. It has all the features I want and need in a smart phone, and allows me unlimited email and internet for a very small monthly fee. When mine broke (on/off switch) I purchased a used one on eBay and swapped it in for the Samsung flip-phone PetMom was using. A quick call to Bell Mobility and wham-bam-thank-you-Bell-Mobility. So I bought another one (again on eBay) for myself. Another quick call to Bell Mobility and now we both have HTC Touch phones, sharing a plan and lovin' it. No new contract, no activation fee - just two phones that work beautifully. Bottom line - stay out of the Bell Mobility store. Just call 888-4-MOBILE and friendly, knowledgeable people will do exactly what you want. That's the way it's supposed to be.

Sittin' on the Dock of the Bay

In the spring an old man's fancy lightly turns to thoughts of boating (sorry, Alfred). Last spring saw repair of our east dock and with a light winter and gentle melting of the river ice it appears to be solid as ever and ready for another season on Daydream Believer. This picture is from last year - we're a long way from being ready to splash; for one thing, the river is VERY low.

Two years ago, however, the ice significantly tipped our west dock and this is the year to deal with that. Ice tipped the outer pier off its rock footing and the whole outer half of the dock was on about a 30 degree angle. Fortunately, the entire structure was constructed with screws so dismantling was just a matter of keeping the batteries charged on the portable drills. Yesterday I removed most of the decking and today I removed the 6X6 stringers and began to take the pier apart. A quick trip to my welder-man for new pier rods and a new pier will take shape.
Then the stringers and the decking and the staving.

Mediterranean Cruise

We booked a cruise last night, with Norwegian Cruise Lines on the Norwegian Jade. We had been watching a 12-day cruise from Barcelona in November and when the price suddenly jumped $1000 overnight we decided we'd better get with it and book.We decided that the January 2, 2011 departure would be fine - fits into holiday and work schedules and was significantly cheaper than the November cruise. The weather is a little cooler, but there will be fewer tourists at the sights we want to see and the 11 degree day here today was gorgeous. We had already paid a deposit for our next NCL cruise so it was pretty painless to book this one. We have used VacationsToGo for all our cruise bookings and have been very pleased with their service.

Next step was to book a hotel recommended by Rick Steeves (our Europe travel guru) in Barcelona. The Hotel Continental was our choice and we decided that, if we're going to spend New Year's in Barcelona, we should splurge and have a balcony room.

We'll probably take the ship excursion from Alexandria to Cairo - it's a little pricey but includes everything. It's an overnight trip and affords us the opportunity to see the Egypt highlights that are on our 'bucket list'.

More details to follow.

Vancouver 2010

When we found out, very much at the last moment, that we were able to get tickets to see Tanith and Ben skate in the Olympic Ice Dancing competition, we hurriedly booked flights and prepared for a trip to Vancouver. Arrangements had been made with a cousin to stay at his house in Maple Ridge and we were prepared for air mattresses on the floor. Little did we know that we would be treated with beds, our own kitchen (with stocked fridge), bathroom, fireplace and air hockey table!! It was much easier for us to get to Vancouver than Tanith and Ben, who were trapped in Philadelphia in a snow storm and nearly missed the opening ceremonies.

Our hosts, Colleen's cousin and his wife, couldn't have been more accommodating - we must get back for a visit when we don't have to be out running around to Olympic events. A rented van conveyed us around the city and we found no problem navigating or parking. Parking lots in the downtown core always had spots and homeowners near the Pacific Coliseum were only too happy to rent their driveways during events. We even parked, one night, inside someone's garage!

It was a pleasure to be together with family for an event as exciting as the Olympics. We've been to many competitions near and far, but this is the most family we've ever had together at one time, numbering 14 in all. We didn't get in a lot of sight-seeing, but that can come on another trip. This was a "Tanith's skating in the Olympics so let's be there" trip. We did get to Stanley Park and Granville Market - next trip we'll see the other stuff.

The weather was amazing - 13-15 degrees and sunny. We were quite taken with the sight of pleasure boats afloat in the marina in February on days warmer than some nights we've spent on Beau Rivage - hmmmm ... makes ya think.

So - until the next trip we're home stoking up the bank account. Check out the picture link on the right - Vancouver 2010 Olympics

Tanith and Ben - we're so proud of you.

"Mom's Book"

At last I have found time to scan and post a copy of what we in our family call "Mom's Book". This is a family history, written by my mother Janet Eleanor Scott Harding in 1985-86, centred on the life of her father George William Scott.

Because I don't have one server which can accommodate the whole book, I have broken it into several sections. Just click on each link in order and then use the 'back' button in your browser to take you back to the list.

When one shares family history, one always runs the risk of giving the appearance that everyone should be interested, much like forcing visitors to watch home movies. Nothing could be farther from the truth. This is simply a convenient way to share this information with those who might be interested. My mother's writing style is very readable and there is a wealth of information herein about life and people in Gananoque, Grace United Church, along with the family history.

I encourage every family to do two things: 1) write down the stories that you have heard your parents and grandparents tell and 2) write the names on the back of photographs

Enjoy!!

Finally - July weather!!

At last we're getting our July weather - unfortunately, it's been the last week of August and the first week of September. Hot, sunny days for boating and swimming. We've certainly been making the most of it with numerous 3 and 4-night outings. Here are some pictures of the amazing scenes we've been blessed with. Last night we attended 'The Mollycoddlers' at the 1000 Islands Playhouse and spent the night at the Playhouse dock. After a trip uptown to the Village Deli for breakfast, we headed out. Today was an absolutely gorgeous day - hot sun and no wind. Locals know that's a perfect day to head to Leek Island (Thwartway on the charts). Leek Island is a Parks Canada island without docks (there are some mooring cans in a sheltered bay on the South side. The west side of the island has a huge bay with a sand beach which extends out from the island several hundred yards. Unfortunately the waves that created the beach make it unpleasant when the prevailing west wind is blowing, but today there was no wind. We were alone in the huge sandy bay for most of the morning and then around noon the other boats started to pile in. Time for us to leave - we headed down river and finally stopped at Gordon Island (Parks Canada) for supper and then motored home.