We're off tomorrow bright and early for Syracuse, where we catch the train to New York City. Although the purpose of the trip is not really to visit NYC, it seemed a shame to be there and not get at least a small taste of the Big Apple. We're staying at the Westin New York at Times Square Friday and Saturday nights. On Saturday we're taking a bus tour of the city and then in the evening we're going to see "Mary Poppins" at the New Amsterdam Theatre.
Sunday is pretty leisurely and we're off to the Port of New York to board the Norwegian Jewel. We chose this cruise particularly because a) it departs from NYC which is easy and cheap for us to get to and b) there are not shore excursions which are very demanding in the walking department. We stop at Port Canaveral and could take a tour of the space centre, but it's expensive and long and we may just investigate the port or stay on the ship and enjoy the empty pool and hot tub.
Next stop is Great Stirrup Cay, an island that Norwegian Cruise lines owns. They have apparently done quite a lot of development, particularly of the area where the tenders dock and food facilities, so that would be interesting to see (having been there on our last cruise).
Then we're off to Nassau, and it is apparently easy to get a real taste of the city without walking too far from the ship.
Then a couple of days at sea while we return to New York. We dock at 8 am on Sunday (April 3) and plan to get a 1:15 train back to Syracuse. Then we'll motor home to Gananoque.
Thursday, 24 March 2011
Saturday, 5 February 2011
Not a patient patient
I have to admit, all in all, that there is improvement in my mobility since my AVM surgery. I'm still recovering from the surgery - I had a misguided mind set that once the incision was healed I could get on with the rest of my recovery. Unfortunately, back surgery is a slow, painful process and it's going to take longer than I thought.
The day I had my stitches out I made an appointment to start physiotherapy. I want some guided exercises to help recover muscle strength in my hips, legs and feet and to learn to compensate for those deficits which are long-term (I can't bring myself to say 'permanent' yet). Unfortunately, the first two sessions have been spent concentrating on ifc (interferential current) treatment of my back. I'm quite prepared to have the physiotherapist heal my back, but I'm afraid I'll be out of insurance long before she gets to exercises for my muscles. We'll see how it goes for a few sessions. It's quite enlightening to be faced with health insurance limits that Americans must face for even their basic health care let alone surgery or hospitalization.
The day I had my stitches out I made an appointment to start physiotherapy. I want some guided exercises to help recover muscle strength in my hips, legs and feet and to learn to compensate for those deficits which are long-term (I can't bring myself to say 'permanent' yet). Unfortunately, the first two sessions have been spent concentrating on ifc (interferential current) treatment of my back. I'm quite prepared to have the physiotherapist heal my back, but I'm afraid I'll be out of insurance long before she gets to exercises for my muscles. We'll see how it goes for a few sessions. It's quite enlightening to be faced with health insurance limits that Americans must face for even their basic health care let alone surgery or hospitalization.
Wednesday, 26 January 2011
Dateline - surgery plus one week
An email update to my friends following my AVM surgery:
It's now been exactly a week since they rolled me into the OR at Toronto Western.
Here's how things stand. The surgery went well, as far as I can determine. I heard precious little from the surgeon - no details whatsoever afterward about the surgery (McP: this is where I could have used you) - and a very small amount second-hand through PetDoc and Colleen from a chance meeting they had with him in the hall while waiting to hear about me. They really had to get quite aggressive in order to get more than a dismissive "We know what we're doing." He did tell me I no longer have a spinal dural arteriovenous fistula and, after all, that is what it's all about. The goal of the surgery, his assistant reminded me repeatedly, is to stop things from getting worse; any lost function which returns is bonus.
I was supposed to return to PetDoc's apartment later the day of surgery - wasn't gonna happen! I had excruciating pain moving and was admitted to get that under control (ya gotta love the morphine pump - wouldn't let me take it home, though). Thursday I would have gone home in the evening but we discovered a pretty significant rash which the doctor couldn't explain. I was given Benedryl and moved to a semi-private for the night. The next morning Colleen and I got a cab to PetDoc's (she was working Friday). I was still, at this point, experiencing the excruciating pain but pain is not a hospitalizable offence. The pain was never from the incision but more generalized and quite intense when I would move - I mean scratch-my-nose move. Just as I was beginning to fret about how I would arrange for more pain medication (the hospital's pain-doctor-expert-lady had prescribed what appeared to be a very short course of medication) PetDoc (nice having a real doctor in the house) diagnosed some of my pain as muscle pain and we found that an extra-strength Ibuprofen in addition to what I was taking did the job!
Yesterday we returned to Gananoque - Toronto to Colborne with PetDoc and Colborne to Gananoque with Dadamom. It is nice to be home and as I become more mobile I'm looking forward to getting back to familar activities. I'm pretty much over the trauma of the surgery and weakness, etc. of lying around for 2-3 weeks and it's time to get on with it.
The major deficit is muscle stiffness and weakness in my legs and feet. I have the strength to stand and could kick a soccer ball - it would just feel very different from this time last year: more like I was swinging a log attached to my hip that was jointed at the knee. I can feel my legs and feet just fine and bend my knees, ankles, toes; it just feels very stiff with a sensation of numbness. I still become numb through the whole pelvic region if I sit without my 'special' cushion.
We were told that the compression of my spinal cord would be relieved over a period of weeks and what is going to happen quickly should happen within a couple of weeks. Any further recovery will takes months and even years. I'm going to start some exercises and return as soon as I can to regular activities. One of the most significant obstacles is still my feet - when I remove my sandals my feet and ankles become almost immediately very numb. No other footware prevents this from happening. Therefore, navigating in snow is awkward; I would grab a shovel and piddle around in the driveway or on the back porch if I had a way of making it less unpleasant; I may just have to learn to tolerate the unpleasantness. Or this may be one of the changes that will take place over time; Colleen, fortunately, understands completely about the feet (one has to be very understanding to tolerate sandals 24/7). After her stroke, she had a similar feeling and she encourages me by telling me that it was a year or more before that sensation changed.
If you have reached it to this point in my email you must be a real die-hard or a masochist. I thank you all for your help, concern, prayers. I apologize for the length of this missive, but I'm trying to make sure I have passed on an adequate amount of information to everyone who might care.
Will keep you posted (albeit more briefly) as things progress.
It's now been exactly a week since they rolled me into the OR at Toronto Western.
Here's how things stand. The surgery went well, as far as I can determine. I heard precious little from the surgeon - no details whatsoever afterward about the surgery (McP: this is where I could have used you) - and a very small amount second-hand through PetDoc and Colleen from a chance meeting they had with him in the hall while waiting to hear about me. They really had to get quite aggressive in order to get more than a dismissive "We know what we're doing." He did tell me I no longer have a spinal dural arteriovenous fistula and, after all, that is what it's all about. The goal of the surgery, his assistant reminded me repeatedly, is to stop things from getting worse; any lost function which returns is bonus.
I was supposed to return to PetDoc's apartment later the day of surgery - wasn't gonna happen! I had excruciating pain moving and was admitted to get that under control (ya gotta love the morphine pump - wouldn't let me take it home, though). Thursday I would have gone home in the evening but we discovered a pretty significant rash which the doctor couldn't explain. I was given Benedryl and moved to a semi-private for the night. The next morning Colleen and I got a cab to PetDoc's (she was working Friday). I was still, at this point, experiencing the excruciating pain but pain is not a hospitalizable offence. The pain was never from the incision but more generalized and quite intense when I would move - I mean scratch-my-nose move. Just as I was beginning to fret about how I would arrange for more pain medication (the hospital's pain-doctor-expert-lady had prescribed what appeared to be a very short course of medication) PetDoc (nice having a real doctor in the house) diagnosed some of my pain as muscle pain and we found that an extra-strength Ibuprofen in addition to what I was taking did the job!
Yesterday we returned to Gananoque - Toronto to Colborne with PetDoc and Colborne to Gananoque with Dadamom. It is nice to be home and as I become more mobile I'm looking forward to getting back to familar activities. I'm pretty much over the trauma of the surgery and weakness, etc. of lying around for 2-3 weeks and it's time to get on with it.
The major deficit is muscle stiffness and weakness in my legs and feet. I have the strength to stand and could kick a soccer ball - it would just feel very different from this time last year: more like I was swinging a log attached to my hip that was jointed at the knee. I can feel my legs and feet just fine and bend my knees, ankles, toes; it just feels very stiff with a sensation of numbness. I still become numb through the whole pelvic region if I sit without my 'special' cushion.
We were told that the compression of my spinal cord would be relieved over a period of weeks and what is going to happen quickly should happen within a couple of weeks. Any further recovery will takes months and even years. I'm going to start some exercises and return as soon as I can to regular activities. One of the most significant obstacles is still my feet - when I remove my sandals my feet and ankles become almost immediately very numb. No other footware prevents this from happening. Therefore, navigating in snow is awkward; I would grab a shovel and piddle around in the driveway or on the back porch if I had a way of making it less unpleasant; I may just have to learn to tolerate the unpleasantness. Or this may be one of the changes that will take place over time; Colleen, fortunately, understands completely about the feet (one has to be very understanding to tolerate sandals 24/7). After her stroke, she had a similar feeling and she encourages me by telling me that it was a year or more before that sensation changed.
If you have reached it to this point in my email you must be a real die-hard or a masochist. I thank you all for your help, concern, prayers. I apologize for the length of this missive, but I'm trying to make sure I have passed on an adequate amount of information to everyone who might care.
Will keep you posted (albeit more briefly) as things progress.
Tuesday, 21 December 2010
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.
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.
Saturday, 15 May 2010
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.
Thursday, 18 March 2010
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 abou
t 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 de
cking and the staving.
Thursday, 11 March 2010
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.
Nex
t 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.
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