Two month post CCSVI treatment injury -- the GOOD, the BAD, and the UGLY!

I made a terrible mistake in my post-treatment recovery and I want to let everyone know about it so they can avoid doing the same. Basically, I underestimated the consequences of trying to do too much. My CCSVI treatment definately increased my energy, but that turned out to be a bad thing, at least for 2 weeks or more. Here's the story...

Over the past few weeks, I've been moving well, swimming, and doing mild exercises (mostly hip and lower body) to build my balance and leg strength. Even though I had ANOTHER bladder infection three weeks ago, I had good optimism going forward. In addition, my doctor saw fit to put me on a daily half dose of an antibiotic to try to wipe these bladder infections from my system once and for all. I have had at least one bladder infection every month for the past four months, so it was time to take stronger action to make sure I had a healthy body to recondition after my CCSVI treatment.

Two weeks ago today, I began a training program using the athletic track at the local high school. My doctor and physiotherapist recommended I use a walker to reinforce and train muscles that would allow me to straighten my stride and strengthen my legs now that I have improved blood flow. A walker allows me to forget a little bit about balance and concentrate on a smooth gait, with no foot drop and even strides. I haven't used a walker to manage my mobility concerns in the past, so this is something new to me, but one that I quickly realized could help me with my training. Little did I realize that a walker would become a lifeline for me very soon!

The first day on a track, I walked slowly and steadily around for 400 metres. It took me 9 minutes and 40 seconds (I used to run 100 metres in 13.86 seconds in school!). As I said, this was my first time using a walker so I didn't want to push it, so I focused on getting the right muscles working and taking it slowly. I definitely felt the difference walking using a walker versus my typical stagger-step that I do to make sure I don't fall. My doctor said we expend an enormous amount of energy maintaining our balance and encouraged me to use the walker so that energy got redirected into walking itself.

This was first thing in the day, so we went home afterwards and relaxed. After about 1 1/2 hours, I decided I had great energy and could go back to the track for another round. Landon was picking blackberries, so I walked around the house and down to the blackberry patch to find him (something I never do -- this involved walking across uneven lawn for about one hundred metres), then stood for about 10 minutes while he picked the rest of the blackberries before heading back to the house. I even carried a basket of blackberries (for those of you not familiar with this west coast fruit, I will tell you that blackberries are like gold -- especially in a smoothie). I was confident of my balance, although I did remark that it was unusual for me to be carrying blackberries because I so often tripped. The last thing I wanted was for Landon's efforts to be scattered in the lawn!

Landon said he still had some work to do, so I headed to the garage and got some hand pruners. This, again, is unusual for me. Normally, my husband backs the car out of the garage and lines it up with the house so that I don't have to walk to the garage (it's about 30 metres each way). I got the pruners and headed down to our miniature lilac.
Here's a picture of the lilac in full bloom, which happens in May around our son David's birthday, so you know why this tree is so special to me (or at least it was). The pruning was going well until I saw a dead branch high up above my head. I couldn't stand fully upright under the tree because of low branches, so my knees were slightly bent and I was reaching high above my head with my right hand, twisting up and to the left. I felt a pain after a few seconds, somewhere in my legs or back, and sat down on the chair I had positioned behind me. I surveyed the branch I needed to prune and decided to try again. Again, I got a pain after just a few seconds before I had a chance to line up the pruners and cut out the dead branch. I sat down and remember saying to myself "come on, you can do this!" One last time, I stood up and held the stretch/semi-squatting position for a second or two longer than before -- just enough time to snip the dead branch before sitting down once more in the chair. At this point, I had no idea of what was to come.

A few hours later, my right hip started to ache a little, which I attributed to my striding on the track earlier in the day. I was even pleased that I could feel results in my muscles! My husband and I decided to relax in our double hammock , but I remember asking him to give me extra time when we were getting out because my hip was starting to stiffen. In an afternoon bath, I added Epsom salts to the water to ease my sore muscle. Again, I asked for extra assistance getting out of the bath because my hip was getting progressively more painful. By eight o'clock that night, I was starting to be in severe pain.

Four and a half years ago, I fractured a vertebra in my lower back in a fall (T12 for those who are interested!). The pain I was feeling that night after pruning the lilac was very similar. I assumed I had reinjured my back and initiated the same treatment protocol I had used for my previous back injury -- lie flat on my back, legs raised at 60°, and only get up to go to the bathroom. In addition, I started taking Advil for the pain. By nine o'clock the next morning, I had already taken more than a 24 hour dose of Advil and the back pain was no better. This is when I made another mistake...

Last January on a trip to the emergency room, a doctor gave me morphine for my high blood pressure (don't ask -- I only took one pill before another doctor told me it was a crazy idea). But, I had the rest of those little morphine tablets in a little brown envelope sitting by my nightstand. I decided to let a few more hours go by to let the Advil get out of my system, then I popped one of those morphine tablets to finally get some relief from the back pain. In about 30 minutes, I noticed I was itching the back of my tongue on my molars. The last time I had that feeling was when I was having an anaphylactic reaction to taking a sulfa drug. I checked and, sure enough, I was getting hives at the back of my mouth.

On the phone now to the pharmacist, she tells me to take Benadryl (Landon had already fished it out of the medicine cupboard) and talks to me for a few minutes while we monitored my reaction. It was clear the hives were subsiding even before the Benadryl took effect, so I took this as a warning never to take morphine again. But I still had the back pain!

For the next 10 days, I alternated taking Advil and Tylenol (eventually switching to Robaxacet instead of Tylenol) every 2-3 hours. The pain never seemed to respond to the painkillers, although I would start getting more cranky after 3 hours, so they must have been doing something. I used a walker, then had to be pushed in a wheelchair anytime I got out of bed, then the walker again every time I got out of bed to head to the bathroom. It hurt a great deal when I moved, when I attempted to sit up to eat, and especially when I went to sit down on a chair or the toilet. Remember I was in a semi-squat position when I injured myself -- I think that's why it hurt so badly when I started to bend my knees on my way down to a sitting position. My doctor, over the phone, told me I was doing the right thing and to wait it out until the pain subsided.

On the 10th day, Landon managed to get me to my doctor's office. I wanted my doctor to poke around my lower back until I yelled ouch the loudest. It took him a few jabs before he hit the bull's-eye. He said I had torn the muscle leading into my pelvis, basically the lowest muscle that is attached to my back.

So now, I continue to do a little bit more every day, still clinging to my new friend (my walker) to keep me steady on my feet so I don't risk reinjury while I convalesce. I know my muscles have weakened over the past two weeks. Many of the gains I realized from my extra walking and swimming and training since my CCSVI treatment are likely gone :-(

I did some videos so you can see my walking while I explain the situation. The first video (blue top) is from my first day walking outdoors after my injury.


This next video (green top) is essentially the same thing done the next day (today). I couldn't decide between the two videos, so I decided to include them both! This one wouldn't load so here's the URL: http://www.youtube.com/watch?v=SlgY6nRLIBs

Finally, this video shows you the culprit, my pruning attempt of my beautiful Syringa microphylla:

One other piece of bad news came a few days ago -- after visiting my doctor, we drove for a couple hours to visit my mother for the first time in a few weeks. When we were almost home, my right leg started getting spasms. These are the first spasms I have felt since my CCSVI treatment. For five years before that, I had spasms every day and they were getting worse. These new spasms lasted about 20 minutes, which I guess is an improvement from the hours they used last. But I didn't like it. Over the next two days, I felt short lived, but definite spasms in both my legs. I don't know whether it was the injury that took up a great deal of my energy or the two weeks lying in bed or the long car trip after not sitting up for two weeks, but the possibility of restenosis in one of the 7 locations I had ballooned entered my mind for the first time.

It's now the third day after my car trip and the spasms seem to have gone again. Nevertheless, it's time for my two month update to the Albany clinic anyway, so I have a lot to tell them and even more questions to ask.

In case you can't see the embedded videos, here at the Youtube URLS:
Day 1 on my feet: http://www.youtube.com/watch?v=t77PdAnn1JQ
Day 2: http://www.youtube.com/watch?v=SlgY6nRLIBs
Pruning no-no: http://www.youtube.com/watch?v=vxUPBFdqr8w

Cheers to all,

Sandra