Day 16: Maybe the start of something new?

As you know, my azygous vein got the Olympic gold medal for having 5, yes that's FIVE, stenoses, each requiring a rather uncomfortable ballooning. Well, the azygous drains the spinal column back to the heart, so if my neuro's hunch is correct and I have mostly spinal lesions and spinal symptoms, I should see some improvement in bladder and bowel.

Or at least I think (and hope) so. Eventually.

A few people (Landon, my mother) keep asking about my bladder. They don't mention the other (most people don't talk about it anyway, even if there's nothing wrong). So, here's my answer to them (and you):

I have been using intermittent self-catheterization for my bladder since about 2004. After a few months of disasterous encounters with bladder infections, I switched to using a catheter on every trip to the bathroom instead of just morning and night. That stopped the infections, for the most part, which is ironic -- I needed to use a catheter MORE in order to stop the infections (I am now a pro -- talk to me about it if you have questions).

I loved the freedom self-catheterization brought me. Instead of getting up 15 or more times a night and racing to find a bathroom everywhere I went, I could now control when I went and could sleep in peace. This satisfaction with the process continues to this day -- I am very comfortable using a catheter and managing my retentive bladder that way.

So...when something started a few days ago I wasn't thinking improvement. But it's been a few days and it's still happening so I thought I would mention it. I usually catheterize 100% of the way, i.e., my bladder just sits there and does nothing to help as I use a catheter to empty it. But, in the past 3 days, when I sit down and start assembling my supplies to catetherize, a little trickle comes out all on its own. Maybe only 50mL or so, but that's still something. Or is it?

And I think the volume escaping before I can get to doing it artificially is increasing. It's maybe 100mL or more now. That's beginning to look like I should start measuring this and tracking progress.

But I won't do that until I know it's something...for sure.

~Sandra

Day 15: Physio for first time

I was both excited and a little anxious heading into physio at the MS clinic this morning. My physiotherapist knew I was getting the treatment and this would be the first time we met after I got back. My walking post-treatment is always a little more stiff in the morning, almost indistinguishable from pre-treatment days except for the better balance. My left foot drops and I can hear it hit the ground with each step. It's strange that my energy, balance, and walking get better as the day proceeds, not worse like before. I used to get up and know immediately if my legs were going to be able to make it to a doctor's appointment or even from the house to the garage (70 feet). Now, the longer I'm up, the better I feel.

So, a 9 a.m. appointment wasn't at my best hour, but it would give my physiotherapist a good first look at my improvements. It was exactly two weeks to the day since I had been treated. She asked me to list my changes, so I began with swallowing, balance, heat fatigue, spasms... That last one caught her extra attention -- she said "those were a huge problem for you before." Yes, they WERE!

We decided against doing extentive strength testing, after all, it had only been 2 weeks and most of my time had been spent travelling, or so it seemed. So we headed for another major symptom -- BALANCE. Test after test, she would say "that's a great improvement from the last time" or "you couldn't do this test at all before." Finally, I said to her: "how often do you get to tell one of your patients that their balance has improved?" She just looked at me -- I knew what she was thinking.

We finished the appointment doing a bunch of strength building eercises to build up my hip and ankle muscles to support my improved walking. She thought the foot drop was probably muscle weakness and not neurological and that conditioning it, along with my better balance, would see it disappear for good. Just before I left, I asked her for a phone book and showed her I could read the itty bitty numbers without glasses.

Even though my hip muscles were sore from all the exercises, I felt well enough to go to the off-leash area with Landon to take Amber for a walk. We're trying to remember when I last was able to do any sort of recreational walking and we figure it must be about 4 or 5 years. The physiotherapist suggested I try walking with a walking pole to straighten my gait, so here's a video of me trying to get used to it. I think I would have done much better just walking with no pole whatsoever!

I walked aproximately 1200 feet before my left foot started repatedly hitting the ground. We were on grass and dirt paths, so the uneven terrain made it even more difficult. So, we called it quits and chalked up more discoveries of my improving abilities.

I really feel like I am going back in time. Must be at least 5 or 7 years so far...

Day 14: Running on energy!

My blood pressure dropped "dramatically" when the doctor ballooned my left jugular vein. He said it was encouraging that it dropped and stayed steady. I have had high blood pressure since 2002 and take BP medications. Yesterday morning, 12 days after treatment, my BP was 106/72. Coincidence? I don't think so.

Just before bedtime, I had 30 minutes outside with Landon in a hammock under the stars. That was blissful, but also chilly. Denise may be queen of "I can jump" but I just discovered something new: I CAN RUN!! I chased my dog down the hallway to warm up (and back and forth 3 times to make sure it was real). Third time I tried pumping my arms and was able to coordinate them too. I had to get up and blog about it -- I'm so excited! Physio at the MS clinic in the morning. Yippee! ~Sandra

Day 13: I dreamed two dreams about my fears

I have been reading reports of others post-treatment having vibrant dreams. I hadn't noticed anything different since my treatment July 7, but I really hadn't been home since then either. Sleeping in hotels and in friends and family homes is all well and good, but it's not home.

So when I got the chance to finally sleep in my own bed last week I thought I would get a more restful night. Not so. I barely eked out a few hours. Maybe it was the shift back to my inclined bed? Home 3 nghts, then off I went to 3 nights away again, with little more than 4 hours each night. Upon coming home Saturday afternoon, I went straight to bed and started sleeping in earnest about 6:30pm. Up at 1am or so for 4 hours, then back to bed for another 3. Last night was more normal -- bed by 1am, awake by 9am. Maybe I can get a normal sleep routine in place now?

An unexpected thing happened these past 2 nights: very memorable dreaming about the capable-me. Not the actual-me, but one who is a bit more advanced in recovery. The first night, I dreamed I was crossing the street at an intersection with my husband and the light started to turn. Without thinking, I ran the last few steps to make it to the other side.

Now, I am not running by any means, nor am I ready to cross intersections by myself walking. I can't look both ways (I would fall over, or at least that's what I assume because pre-treatment I couldn't do it). I can probably make it the distance OK now in a somewhat straight line, but watching for cars is a big fear of mine.

Last Christmas, my friend Lynn took me clothes shopping. She dropped me as close as she could to the shop -- across a busy downtown intersection. OK, I know Victoria isn't exactly Toronto, but it looked busy to me! I was to walk across with the other pedestrians to the shop while Lynn looked for a parking spot. Simple enough? Well, everyone else pulled ahead and it was just me shuffling across the road alone. The light was blibking don't cross and then turned to a solid colour. I had about 15 feet to go and cars were evrywhere -- turning left behind me, waiting to my right to turn right. I looked directly into the eyes of a man waiting on the corner and mouthed the word "help." He sprang into the intersection and grabbed my arm. A woman approaching the corner on the sidewalk ran into the street and grabbed my other arm. I thanked the man and said "I have MS -- my legs just stopped moving." The woman said "I thought so when I saw you struggling, my aunt has MS too." These 2 samaritans delivered me safely to the corner and into the clothing shop with its welcoming chair.

Now, I think this experience shaped my dream of 2 nights ago, where I happily ran the last few strides to cross a busy street. Getting sideswiped by a car while I'm a pedestrian is one of my biggest fears because I cannot watch them and watch the road/my feet at the same time.

Last night, my dream saw me crossing an intersection again. This time, I was with my husband and son David. They were behind me talking and I walked ahead alone. I crossed without incident and walked along the sidewalk. At some point, Landon started filming me because I was walking so well. I came across a path rising up a small hill. I walked up the steep path without difficulty, unaware that Landon was filming me. At the top, I turned to see where the two of them were and saw the camera. Landon challenged me to walk down the path...so I did.

Six months ago, I was going to a business meeting at a new destination. I got there very early to make sure I could find the best parking and get to where I needed to be. I was delighted to park about 25 feet from the front door of the ground level business. I could see inside to the boardroom door where my meeting would take place. Only 25 feet -- what could possibly go wrong? Well, the ground from the parking lot to the front door of the business sloped downwards. Not a lot -- enough to make a glass of water run downhill, but probably not an egg if you cracked it on the sidewalk. A very gentle slope, then, with nothing to hang on to either side. I was paralyzed. I stood at the top of that slope and weighed my options. I could walk ~200 feet to where to parking lot and building were level and then walk back along the building to the front door, but the 400 foot round trip was way too much for my legs to handle. Or I could ask this kind passer-by. "Excuse me -- may I have your help for a moment?" I explained to the fellow and his wife that myMS prevented me from walking the short slope towards the building safely and I needed his arm to make the trip. "Not a problem!" he replied and down we went. Once inside, I rested my legs and drank oodles of ice water so I could make it back to my van on my own.

This dream was probably prompted by my actual-me experience of yesterday, where I walked up quite a sloped lawn about 20 feet, spoke to someone for 10 minutes, then turned to walk back down the slope. I paused -- could I do it? Should I rest first by sitting on the lawn before attempting the walk? I decided to start walking down a sloped driveway adjacent to the lawn and quickly felt confident enough to walk the rest of the way on the sloped lawn and well beyond another 30 or so feet to the house. Obviously, my body is feeling I am overcoming my fear of walking down slopes and is dreaming of even more capable days ahead.

And so am I.

Day 10: Stepping out on my own

I just had the most amazing experience! I went to a bank machine (first time in ~7 years) and asked a customer how to use the darn thing (it's been that long). When I was done, I told her why I needed help and why I could now walk into a bank and stand in line. She hugged me immediately and said "How liberating!" She didn't know about CCSVI, but was so happy for me. Reach out to others - they will support us! ~Sandra

Day 9: Finding the new me

I'm at a conference still, but I am having zero problems swallowing fancy food every day, I shock myself with my good balance (but I'm still hitting walls from time to time!), and I don't run out of energy mid-step, mid-day or even at the end of the day (MOST unusual). I had glimmers of spasms yesterday, but they went quickly. So ~31years of MS vs. 9 days of seeing every change be a positive one, no matter how small. ~Sandra

Day 8: Leaving home again!

Wow, I have more energy and balance; the few hints of spasms haven't materialized; my swallowing continues to be better, dare I say "normal." That said, I have less energy today than yesterday because of another bladder infection (or the same one as before treatment back again??), which normally knocks me onto the couch for a few days (ask Wayne!). Despite this, I'm headed to a conference in Vancouver on my own for 3 days then some visits with friends and family! ~Sandra

Day 6: First day home

We flew home yesterday -- 5+ hours on a plane. No spasms at all during the flight! My swallowing, balance, spasms, and eyesight continue to improve. I did not sleep well Sunday, so no exercising today on my first day home. I just noticed beginnings of a muscle spasm today (but not the spasm itself) in my right leg. My friend (a pharmacist) said the Valium may have relaxed my leg spasms and eased my swallowing, but she assured me any drug effects would be gone by now. The hint-o-spasm is a warning I need rest -- so early to bed tonight! ~Sandra

Day 4: New eyes!

42 hours and counting with no spasms (leg, swallowing, bowel) whatsoever. GOODBYE BACLOFEN! My legs have old bruises on the quads from me pounding them with my fists to relieve spasms every day for 5 years -- now they are quiet. I swallowed pills 4 at a time yesterday (and can probably do more) whereas before one pill bounced in my throat until the pill dissolved or I spat it out.

768-2443, 864-5844 -- guess what these are? This sounds silly, but I had a hunch my vision was better so I checked the phone book. I CAN READ THE WHITE PAGES WITHOUT GLASSES! A week ago, I was going to get my eyes rechecked because my reading glasses weren't strong enough anymore. Everything's crisper and no squinting. How is this possible? ~Sandra

Day 3: Steady improvement

Road trip today, but still some new developments. Weather better (26 instead of close to 40 degrees.) I forgot to mention yesterday I got dizzy while shopping (I was moving myself around in a wheelchair in and out of stores). The doctor commented how my BP dropped during the procedure, so I wondered if the dizziness was low BP again? Others have mentioned this too after treatment.

NEW today -- I can do 4 heel-to-toe (none before), my finger to nose is perfect, I can stand without swaying, stand briefly (but stably) on one leg at a time, and do deep knee bends. Continuing is the total absence of spasms (maybe a few seconds of the start of one, but nothing happened), and now swallowing multiple pills and moutfuls of food without difficulty. Slow and steady!! ~Sandra

Day 2: Back to clinic, then shopping!

The most beautiful picture in the world! Indulge me, folks, but I am overwhelmed by seeing this snapshot of my left jugular vein open and flowing:

I shopped all day...ate large amounts of ice cream to stay cool in the slightly cooler (39 degree) heat. Loads of clothes bought, but no shoes! I went for a followup ultrasound and all veins open and flowing. No heat fatigue at all (normally getting dressed in the morning tires me out) and absolutely no spasms of any kind (swallowing, bowel, leg) for the past 30 hours and counting.

Back at the hotel, my son David and friend Ali asked me to jump! It took some coaxing, but I agreed to try. I jumped two or three times, about 1-2 inches off the floor. But I landed without support on my feet!

I stood up from being down on the floor TWICE just now (the first time was because I was 5 cents short at the vending machine and I was hoping to find spare change -- the second time I was just showing off). I haven't stood up without chairs / people / even my dog's back to hold on to for years... 5 or more.

After a full, full day, Landon and I just danced -- note new polka dot dress! ~Sandra

Day 1: A New Beginning

I'm done and back at the hotel! Procedure took 1hr 20mins -- left jugular ballooned twice, right jugular ballooned twice, and azygous ballooned 5 times for minor narrowing. No stents!

This is my room during the procedure:


Thanks to my great new doctor and his fabulous staff, especially nurse Michelle. My neck is slightly sore, my feet are pink, and I'm surrounded by Landon, son David and friend Ali running after my every wish. What more could a girl want? We had Pizza Uno in the hotel room for dinner tonight and I had no trouble swallowing it while semi-reclined in bed. Hmmm... Shopping comes tomorrow!