Tuesday, August 7, 2012

So a Little Time has Passed....

It been a few weeks since my last post. At first I didn't know what to think because the initial benefits didn't seem to change much, but now ever so slowly, I think I may just be improving further. I feel more energy (enough to resume my rants about politics, sexism, and other thing that irk me), my balance is improving, and tonight...I walked up the stairs -slowly- but properly. This marks a change for me. I  did not grab the rail and haul myself up. I stepped up, one foot after another. This is a small and simple thing, but I have to say, it made me pretty happy!

Monday, July 23, 2012

Back to Work

I just finished my first day back at work. This afforded me the opportunity to better assess my pre & post procedure symptoms. I confirmed what I already knew, that stress exacerbates whatever symptoms I already have. Even minor frustrations have an effect, which drives me crazy. lol. I can now definitely see that my energy level is better. I found it easier to get up and go to work, and I am less tired now that I am back home. I also found the 'cog fog' to be a bit better, and found it less difficult to remember the sequence of specific tasks/event. This is awesome!

Unfortunately, the strength in my right hand seemed to wane as the day wore on. Right now I am back to typing with my left hand. This seems to be directly related to my level of fatigue, so I will check to see how it is in the morning.

On the whole, this was a successful day. I didn't even need my modafinil (fatigue meds) at all. I also fell asleep the night before last without needing my zopiclone, which is also promising.

I am still trying to figure out how to get my MRV and angioplasty images off of the CD ROM, but will post them after I figure it out. Bye for now :)

Thursday, July 19, 2012

The Procedure

Last week I underwent the CCSVI procedure in California, at Synergy Health Concepts. I am starting this blog as a way to keep track of any developments following this procedure. In my inaugural blog post, I will recap the events of last week.

On Monday, July 9th, Derek and I travelled to California. It was an arduous trip, and I now understand why connecting flights are such a pain! Vancouver airport in particular was a nightmare. There is a huge amount of walking, and was I ever glad I took my cane. By the time we cleared U.S. customs, my right foot was dragging so much that I may as well have been hopping around on my left only. When I had to take my shoes off, I plopped down on the ground to do so, since standing wasn't an option. People were giving me funny looks, but I am frankly surprised that more people don't sit on the ground. I am pretty sure I would do that even if I were 100% healthy.

When we finally got to the hotel in California, we had been travelling for about 15 hours. This was partly due to being at the airport early, and dropping the car off in Newmarket and getting a ride to the airport from Derek's dad. Nevertheless, it was a very tiring day.

On Tuesday, I went for a 1.5 hour MRV (Essentially the same as an MRI), and had tests done to assess the performance of my autonomic nervous system. For that test they use little electrodes, similar to an ECG. Finally, I met with Dr. Arata to discuss the procedure. He explained that the clinic has shifted its focus somewhat, from blood flow to stimulation of the vegus nerve which plays an integral role in the functions of the autonomic nervous system. He also explained that restenosis can be predicted somewhat by the shape of the veins. Those that are "cone shaped" have about a 50/50 chance of restenosis, while those that are tube shaped are under 10%, generally. He estimated from my diagnostic tests that mine were more likely to be tube shaped.

The doctor also differentiated between symptoms of the autonomic nervous system (more likely to be improved by CCSVI treatment) and those of MS. The autonomic symptoms include energy, cog fog, bladder issues, headaches, and speech (such as projecting one's voice). These are the symptoms more likely to see immediate improvement, although he cautioned that I might not feel more energy right away since I would likely still have some jet lag. Mobility and other MS symptoms may or may not improve over time, and only about 10% of patients experience immediate relief from this category of symptoms. I was really hoping to be in that 10%, but I kept my expectations grounded in reality.

Wednesday I underwent the procedure. I was nervous going in to the operating room, so I think they gave me a bit more anesthetic than some people get. lol. I don't really remember the actual procedure. When I as wheeled into the recovery room, I felt no pain. I tried wiggling the toes on my right foot, but I couldn't tell in my doped up state if it was much easier than before.

The doctor spoke to Derek directly after the procedure, to left him know that it went well. However he did indicate that my left jugular turned out to be the 'cone shaped' type. I will have a complete report in a couple of weeks to describe what exactly was found and done. It will also have the report from Dr. Haacke regarding the MRV results. This aspect of the diagnostics is the primary reason I chose this particular clinic, so I can't wait to get it.

After a couple of hours, a shuttle was called for Derek and I to return to the hotel. We left, with instructions that I was to rest all day and apply pressure to the incision site if I shifted positions. I was glad to lay around all day watching TV.

As the anesthetic wore off, I felt some soreness in my neck and at the incision site, but nothing really painful. I did notice that I did not get a headache at all. This is a common side effect of the procedure, and I am definitely prone to headaches and migraines, so it was a pleasant surprise. Unfortunately, I did not notice any miracle benefits from the procedure. I was not part of that elusive 10%.

Initially, I was a little disappointed with the results. However I have noticed a couple of promising things over the last week. First, even though I did not feel a fantastic rush of energy, I clearly am able to do more than I was before. On Thursday, I felt well enough to go out (albeit with my cane), and we went to the aquarium in Long Beach. We did a lot of walking, and I was up at 6 am, feeling fairly rested. This is unheard of for me. On Monday I went for a swim first thing in the morning before our flight home, also something I normally wouldn't do knowing I had a long tiring day ahead of me, and I felt able to do a proper front crawl for the first time in a long time. My right side seemed stronger. Also, on the way home I toted my own carry-on bag for most of the trip. This might not seem like much, but on the way there I never touched it. Derek carried it the whole way...along with most of the other bags...

Second, I was entirely free of headaches until yesterday. That was, I suspect, caused by some champagne I drank the night before. I shouldn't have pushed my luck. lol. Normally I would have had headaches simply from being so tired.

Last, my right hand seems stronger, and Tuesday I actually wrote out a 'to do' list, which was messy but legible. I have not been able to do that for at least a year. I also seem to have just slightly more balance.

While I was at the clinic, I met some other patients undergoing the same treatment. Some of them had friends or acquaintances who had been treated there as well, and were confident based on the experiences of others, that changes would occur over time rather than immediately. I can only hope that this is the case for me.

In any case, I am super glad to have tried this treatment. If it only reduces my headaches my life will be considerably improved and I suspect that I will experience more benefit than that. I will be able to gauge my energy levels better next week after I return to my regular work schedule etc. Right now I am still a little out of my element so it is difficult to compare energy before to now. also, I no longer have to wonder "what if...."