Going to Brooklyn

I'm due to have a retreatment for CCSVI on Friday in Brooklyn! I'm not sure what to expect but I feel really good about the doctor doing the procedure: Dr. Salvatore Sclafani. Perhaps Dr. Sclafani will use larger balloons and treat both jugulars and azygous veins---I'm not exactly sure but that's what has been discussed. More will be revealed.

Back to the Starting Point

Well I’m pretty much back to where I was before going to Poland for the venoplasty procedure. My symptoms are the same as they were pre-Poland.

It has been quite an adventure with twists and turns at unexpected moments. Despite my best efforts to stay equally content with any outcome, I certainly felt excited when I had improvements and confused when I experienced a couple steps forward followed by a step backward.

I’m trying to not get discouraged because I think my improvements, although short-lived, indicate that there’s hope. Since the procedure helped me for a few months I’d like to find a way to have another treatment that makes the positive changes permanent.

Slowly the reality is setting in that I’m back to the baseline of where I started from. Sure I’m bummed that improvements didn’t stay longer. It was nice living with more cognitive abilities, more energy and not feeling overwhelmed when there more than two people in the room with me. I even went to a museum and wasn’t over-stimulated by the masses of people there!

I went into this saying that as long as it didn’t make me worse, and hopefully would stop progression of the illness, I’d be okay. So I’m sticking to my beginning premise just as my symptoms have returned to their original starting point.

Dissolvable Stents!

Abbott Labs is enrolling patients in Europe for Phase 2 trials of a dissolvable stent for arteries. I mention this because this stent could be quite useful for people with CCSVI (and MS).

The resorbable (yes, that's a word) stents are made of corn starch and after two to three years will biodegrade completely. At least that's what the manufacturer intends, and the trials will confirm if the stents disappear in fact.

Since my improvements are slipping away I've begun to read more and more about the options available to me. In particular, I'm trying to get as much information on the potential risks and benefits. There isn't a lot of data to pore over, and I'm constantly reminded of my status as "guinea pig."

Unless I would prefer to take on the role of tortoise and slowly crawl down the path as I grow older and rabbits hurry past me. I could watch as the world around me moves forward with CCSVI treatments. I don't have anything against tortoises mind you, but moving at their speed can be as painful as living with a chronic illness.

So dissolvable stents would take maybe five or six years to get through trials if things go smoothly and would then need FDA approval. Did I forget to mention that the current trials involve stents placed in arteries, not veins? But perhaps using the stents off-label would ensue after a period of time if all goes well.

Alternative options for my second procedure could involve venoplasty with a large size balloon. Dr. Tariq Sinan has had some success with this procedure and may share some clinical data about his work in Kuwait. My concern is about over stretching veins that have thin walls (unlike arteries that have thick walls).

I'm publishing this post without leaving it to marinate in juice overnight and then edit the words after a good night's sleep. True, you caught me feeling cynical about the attractiveness of any potential options for me right now. I try not to write when I'm not feeling optimistic, but sometimes I just need to break my own rules.

Update Three Months After

Yesterday I took the last pill that I brought back from Poland so it feels like a good time to post an update. I continue to ebb and flow, and thankfully there aren’t any major changes in my health. My day-to-day activities still include gentle yoga, swimming, staying current on CCSVI info and a small assortment of other things.

However, my energy occasionally lets me do two hefty activities in one day. Recently I spoke to a group of yoga teachers about MS and how to instruct students with the disease---the first time I presented to a group of certified teachers! The event went well and I learned from the experience (and so did the others). Fortunately or unfortunately, that same day a workshop was being offered by a different studio on how to teach yoga to students with disabilities---and the presenter had asked me to attend so enrollees could practice on me.

If this combination of events had occurred prior to my procedure in Poland I would have had to choose between the two but now, with the help of a long nap after event #1, I was able to attend event #2. Mind you, I didn’t do much at event #2 except show up---but having enough energy for even that was an improvement over what I could do pre-Poland. The next day I had to nap more to recharge batteries (I didn’t bounce back quickly), but I really hope this energy lasts because it’s nice to participate in life more.

My heat insensitivity remains the same---we’re experiencing a heat wave in California right now and I’m limited to where I can go. If the temperature is over 75degrees I need a fan to keep me cool, and that’s just a temporary solution. Air conditioning keeps my body temperature low enough so I’ve been staying at home most afternoons with the AC on. My misguided (and wacked-out) thermo-regulation seems to be tougher to fix than other symptoms!

Recently I asked for a second opinion on the venography images from the procedure in Poland. This feels like a big step for me. I asked an IR doctor who replied that he could see a persistent problem in the left Internal Jugular even after balloon angioplasty. Yeow.

Next he said that the Azygous looked “suspicious,” in contrast to the doc in Poland who said the Azygous looked fine. I somehow know that I was undertreated (don’t ask me to explain how I know that) but I’m moving cautiously right now in considering more treatment.

I’m not sure that I know enough about the risks and benefits of a second procedure to make an informed decision yet. Plus, I’m not eager to be a guinea-pig again so soon. So I’m going to spend a bit of time reading what I can find on line about second procedures, asking friends about it, and generally mulling it over.

I’m still ebbing and flowing. Just when I think the ebb won’t ever end, I start flowing again and feeling better. The good times don’t reach the height of right after the procedure, but I’m still much better than before I went to Poland! As soon as I can explain what’s going on with a bit more clarity of thinking, and perhaps some eloquence if I’m lucky, I’ll post again. Ciao for now.

EBB and FLOW

Part 1: EBB
Before I left for Poland I told myself not to expect any improvements in health and just be satisfied with the outcome of the procedure whatever it might be. So when I felt immediate symptom relief from the treatment I was more than simply pleased---I was downright exhilarated. When the improvements continued growing I hoped they would never stop.

For several weeks I didn’t need to use my cane. When going for a swim I could walk cane-free from the locker room to the outdoor pool and back again. I remember enjoying how it felt to slowly swing my arms alongside my body as I stepped with confident gait. Looking around me at trees and flowering bushes was fun, mostly because I didn’t lose my balance when slowly turning my head and shifting gaze with my body in motion. In the parking lot I passed up the opportunity to use a disabled parking space even though it meant I would have to walk a longer distance to the entrance door.

I remember being surprised to see the time of day and realizing that I didn’t need my usual nap. In particular I delighted at finding myself awake and able to be cognitively present in the evening around 7:00, 8:00 and sometimes 9:00 pm. Previously my energy had been so low by 6:00 pm that I rarely did more than stay at home and read after that hour.

Although I’m very glad to have experienced for about four weeks much improved ability to walk, balance, think more clearly, and have greater energy, I went through a difficult time when the symptom relief lessened. After spending a couple days feeling sad, when even swimming wouldn’t snap me out of the blues, I had to admit that I’d become accustomed to my new-found abilities. Since then my life has settled into a familiar pace similar to how things were pre-Poland: I swim, do Gentle Yoga, read, play with my dog and help with CCSVI causes.

Part 2: FLOW
My symptom relief has increased since writing the last Ebb paragraph above, much to my surprise. While trying to understand the reason for the ups and downs of my health I came to the conclusion that I was using a lot of mental energy and not producing any good answers. (I try to steer away from those unsolvable puzzles in my life.)

Today I’m enjoying how I feel and am glad to have a day that provides more symptom relief than last week. It seems as if things are flowing again and I’ll try to use this time on projects that are more difficult (MS forced me to be good at prioritizing)!

One rather challenging task that I’ll spend some time on today is thinking about ways to not repeat the pitfall of disappointment during my Ebb time. Looking at my life realistically, Ebb is just as likely to return as Flow. Just like the cycles of nature, my disease follows a similar pattern of wax and wane. With feet planted firmly on the ground to avoid unrealistic expectations, I’d like to avoid getting the blues next time I wake up with diminished symptom relief.

Perhaps I’ll spend some time reading words of wise elders to hear what others have said about this predicament. I’m certainly not the first person to have encountered it.

What an incredible journey continues to unfold.

Went to a Fiesta today and unfortunately had to leave soon after arriving because I overheated! As I'm munching on chips, guacamole and sipping on pepsi the sun starts beating down on my legs. Sadly the party had few seats in the shade and mine was becoming indundated with sunshine.

Long story short, Chris and I headed home much sooner than desired. And here I sit at my keyboard with the central AC keeping me functioning. This was the first time since Poland that I couldn't avoid heat despite my attempts to plan ahead.

To answer the question in the forefront of your mind, "No, the CCSVI procedure didn't get rid of my heat sensitivity!" I'm better right now with some symptom relief but I still completely shut down physically and mentally when my core body temperature goes up too high.

Here's what's in the forefront of my mind: If some people think that my improvements aren't real but just placebo, then is my continuing heat sensitivity also fake? If some symptoms are placebo, then symptoms that remain bad are the flip side of the same coin: All in my Head.

I only wish it were so.