Monday, December 26, 2011

Post Christmas Update

We hosted Christmas dinner this year...for 12 guests.  The first time in my entire adult life I have had that many people in our little house at one time, let alone sitting down for dinner!  Thankfully, my mom was staying over to help.  Christmas Eve day was spent cleaning, organizing and prepping for Christmas Day.  Got up at 8am and basically was on the go until 7 pm when we sat down and watched one of my favourite musicals, The Sound of Music.  Surprisingly, I was not really tired, although my legs were protesting a bit. 

Had to get up at 7 the next morning to start the 20lb turkey that was almost too big for my oven. (definitely a bit tense in the kitchen) and then basically was on the go being the supreme hostess until everyone left at 8pm that night.  Dinner was a successful affair...yes!

Amazingly, I was feeling good and my legs did not feel any different than they usually do, despite the extra stress and activity I was subjecting them to.  Even after eating some forbidden foods (aka chocolate and Christmas cookies) I don't feel any worse?!

Could it be I am seeing some improvements in my symptoms? 

Monday, December 19, 2011

Liberation procedure update I went in on the 15th of December to have the 'liberation procedure' done at the Vascular Access Center in Seattle.  Dr. McGuckin did not perform the procedure, rather his associate Dr. Kirsch, did.  Coincidentally, Dr. Kirsch is a friend of Dr. Vogel, who performed my initial 'liberation procedure' in Germany, last year.  It was interesting to listen to his comments about what Dr. Vogel did or did not do. :P

So, after thoroughly checking the renal, iliac, inferior vena cava, superiour vena cava, azygous and both jugular veins, they found I had 80% blockage in my left jugular close to a valve near the collarbone and 50% blockage in my right jugular, in pretty much the same spot.  Dr. Kirsch used a 14mm balloon to dilate both veins, successfully.  I'm curious as to what size balloon is used most often, as Dr. Vogel only used an 8mm balloon...and let me tell you...I felt the difference!

I was a bit disappointed that they didn't find any blockages in the iliac or renal veins, as I was convinced blockages in these veins might be what is contributing to the increasing numbness/spasticity/heaviness in my legs.

There hasn't been any real changes in my symptoms, except that my hands have been hot/very warm (which NEVER happens) and my feet have not been cold at all (something I have been dealing with for many years).  I imagine this is due to better circulation?!

I still think I may have issues with my leg veins and am still waiting for a duplex ultrasound. (this may take a while, as wait lists for certain diagnostics in our province can be quite lengthy).  In the meantime, I think I will go ahead and try the diosmin/hesperidin formula I got from my Naturopath to see if it might alleviate some of my leg issues.

Wednesday, December 14, 2011

May-Thurner Syndrome

When I was speaking with the intake nurse from Vascular Access Center and relaying to her my MS symptoms, she asked me if I had ever been tested for May-Thurner Syndrome.  My reaction was pretty much the same as everyone else..."what is that?...never heard of it?"

According to Dr. McGuckin (surgeon at VAC) he is finding that 70% of the patients he treats for CCSVI have May-Thurner Syndrome. (go figure?!) Main symptoms are pain and swelling of the legs and is caused by the right iliac artery compressing the left iliac vein as it crosses over it. 

I find this fascinating, as again, we have a possible circulatory problem contributing to what we have always imagined was an MS symptom. 

Fortunately, Dr. McGuckin routinely checks for May-Thurner Syndrome when he checks for CCSVI.  Who knows, maybe I'm one of the 70%.  I will find out tomorrow!

Tuesday, December 6, 2011

Round 2 Coming Up

Well, I went and did it!  Booked my appointment with the Vascular Access Center in Seattle for my second "liberation" procedure.  It was my hair stylist, Tarise, who actually got me to make the call.  It's been in the back of my mind for a while now, but not until I had one of our enlightening conversations, did I finally acknowledge (out loud) to Tarise, that this is what I really wanted to do. 

I'm scheduled for the procedure on the 15th of December.  This works out well for me, because it gives me until the New Year before I have to go back to work.  And I am so hoping that I will be able to do that...I miss my students. :((

Unlike the first time, I have no expectations whatsoever...I think I'm afraid to have any.  If I have veins that need to be fixed, I will get them fixed so that my body can, perhaps, focus on healing some of the damage that's been done (which I see as more of a long term process). 

It's my Christmas present to mself. :)

Sunday, November 27, 2011

The Bottom Line

I wanted to add this last bit to my previous post, as this is what I really believe is going on.
  • I truly believe the body can and does heal itself.  However, it can't do it very well when it also has to deal with things in the body that are wrong.  Until I correct what is wrong within my body, I will not see the kind of significant improvements I am hoping for.  Fix what is wrong, and then the body can devote all its energy and resources to healing the damage that's been done.
The bottom line is:   Have the CCSVI procedure to fix the vein issues so that the body can then utilize everything I'm already doing (diet, supplements, acupuncture, physio, massage, etc) to heal the damage!

Saturday, November 26, 2011

Moving Forward

The past week has been an interesting one for me.  I attended the Global CCSVI conference that was held last Sunday/Monday and was able to listen and reflect on what a number of the presenters had to say regarding CCSVI.  A huge thank you to the volunteers from the National CCSVI organization for putting together such a fabulous event.  For me, it came at just the right time...I was feeling quite discouraged about my health, and this conference, along with what I've been doing with the acupuncture, has totally reinvigorated me to push forward!

I'm feeling as if there's been a shift in my thinking and that another piece of the puzzle has fallen into place for me.  Whatever it is, I welcome it and would like to share some possible connections/questions/comments I have been making this past week.
  • The TCM 'intervention' seems to be helping.  In the past week, my entire lower leg has actually stayed fairly warm to the touch, a thing unheard of the past few weeks, nay...months!  I have actually gone up to my husband and said "feel my legs, feel my legs"LOL .  My feet haven't been ice cold either.  That hasn't translated into any big changes in the stiffness/numbness of my feet, but I was able to drive around town and feel safe doing that's pretty good.
  • My acupuncturist/TCM doctor has me on some Chinese herbs to support my kidney and liver.  Last week she also added another herbal powder (Si Ni San) which is referred to as a frigid extremeties powder to help with the circulation of my blood.  I find it very interesting that the TCM doctor believes the worsening of my symptoms is due to poor circulation and connects it with my kidneys/liver Qi.  The reason I find this interesting is that the renal vein is now being checked during CCSVI procedures...which begs the question, Is there some connection between the renal vein and what the TCM doctor, my massage therapist AND my reflexologist are saying is poor circulation/flow/blockage in my legs?
  •  My CCSVI procedure only involved the IJV's...not sure about the Azygous and I know the renal, iliac, and interior/exterior cava were NOT checked.  This begs 2 questions: Do I have problems with the veins that haven't been checked (current data suggests that 70% of people with CCSVI have issues with the Azygous) and Have I possibly restenosed (current data suggests that 80% of patients restenose within 18 months)?
  • I think CCSVI is more tangible a condition than MS.  Therefore, I don't believe there is such a thing as MS.  MS is just a convenient label that neurologists have put on a wide variety of symptoms.  
  • Listening to Dr. Code and his struggles with diet, makes me feel a lot better about how I'm managing with my diet.  :)
So, where does this all lead to??  Well, it looks like I'm going to have to have my veins checked for CCSVI again.  I'm leaning towards Vascular Access Center of Seattle.  Dr. McGuckin was one of the presenters at the CCSVI conference and I liked what he had to say and his enthusiasm for this procedure.  If there is any one out there who has had Dr. McGuckin perform the procedure on them, I would love to hear your thoughts/comments.  In the meantime, I will continue to keep the status quo.

Friday, November 18, 2011


I've really been re-evaluating these past few days what I'm doing as far as diet and supplements go.  Not being able to drive, or at least not being able to drive safely, has scared the 'bejeebers' out of me because not being able to drive has so many implications.  Foremost is not being able to drive to work (I have a 50km commute) and just the lack of the sense of freedom that driving brings just leaves me feeling scared.

So, I've been doing a lot of re-reading of books that have been helpful to me in the past and looking at health articles on the web.  One thing I wanted to share was Dr. Andrew Weil's "Seven Strategies of Successful Patients" from his book, Spontaneous Healing.  In it, he identifies 7 common strategies that patients who experienced spontaneous healing used.  They are:
  1. Do Not Take "No" For An answer
  2. Actively Search for Help
  3. Seek Out Others Who Have Been Healed
  4. Form Constructive Partnerships with Health Professionals
  5. Do Not Hesitate to Make Radical Life Changes
  6. Regard Illness as a Gift (that's a tough one)
  7. Cultivate Self-Acceptance
 I also want to share this website, which I have found to be helpful, especially during those times when I am feeling discouraged.  It also offers a free e-book entitled Healing MS: A Hero's Journey.

It's hard to stay positive when your body doesn't seem to want to cooperate, despite your efforts.  But looking at your situation with a 'glass half empty' view doesn't help you at all.  So the only choice left is to continue fighting for and searching for the thing or things that will help you!

Thursday, November 17, 2011

TCM Intervention

I was feeling really frustrated this past week, as I was beginning to think that I may be having a relapse?  Haven't had one since the CCSVI procedure, don't really want to believe that's what it is...but the evidence seemed to be pointing in that direction...right time of year, sudden worsening of numbness in feet/legs, very cold extremeties, and increased spasticity in my legs which has made it very scary to drive at the moment and has me wall walking/wall bouncing a lot of the time!  Aargh!! :(

I went to my scheduled Acupuncture appointment yesterday, hoping that I would find some relief/help.  Now, I've been seeing Vanessa regularly for about five months now, mostly for Acupuncture, but we've been introducing Chinese herbal remedies into my 'healing regime' the past couple of months.  Yesterday, when I told her I suspected that I might be having a relapse and gave her my reasons why I thought that, she immediately went into what I now refer to as 'triage' mode. LOL

According to Vanessa's explanation as to what was going on with me, I was NOT having a relapse (yeah!!) but a reaction to the change in weather.  (We've been having colder weather this past week...hmmm....coincidence??....not according to Vanessa!)  Because I already have problems with blood flow (in my legs), when it gets colder, the body needs to work a little harder to maintain blood flow, especially in the core (trunk area), and everything constricts which results in even poorer blood flow to the extremeties...hence increased coldness, numbness, and spasticity in my legs.

She immediately went to work with the acupuncture needles and then had Antonella, another practitioner, do moxibustion therapy on my feet.  It was weird having both of them working on me...I jokingly commented that I felt like I was in emergency, to which they replied, "this IS an emergency, we need to get your blood flowing!"

Moxibustion or 'moxa' for short, is an interesting therapy.  Moxibustion is applied indirectly (a few cm from the skin) using sticks with compressed moxa. (Chinese herb).   In traditional Chinese medicine, moxibustion is used on people who have a cold or stagnant condition.  (Cold feet and poorly circulating blood?...  I'd say I qualify.)  The burning of moxa is believed to expel cold and warm the
meridians, which leads to smoother flow of blood and qi.  

After my treatment, I was sent home with my own moxa stick and an herbal 'tonic' (which I have to mix with water,  drink 3x/ day, and tastes absolutely disgusting!).  I have to use the moxa stick on my feet 3x/day as well.

I like the moxa stick, the warmth of the stick on the bottom of my foot is soothing, although I have to be careful not to keep it in one place for too long or too close, as it starts to get VERY hot!

Is it working?...well it's only been a day, but my feet have not been as icy cold as they were and I think, just maybe, that I'm moving around just a wee bit better.  Only time and a little moxa will tell!

Thursday, June 30, 2011

Do you Voodoo?

Well, it's been quite some time since my last blog entry.  But as I like to say, "Better late than never!"

The Bioness trial was a bust.  (See Bionic Woman entry). I was so sensitive to the electrical stimulation, that the physio and I felt it would be a good idea to stop, take a break, and revisit it during the summer. I had some other things going on at the same time that was causing some stress which = worsening symptoms...(my dad has prostrate cancer, he broke his hip, and then we found out he had a number of other serious health issues and was given 6 months to live...a bit much to handle all at once).

Anyways, enough of that.  I wanted to write about my newest experiment...Acupuncture! The literature I've been reading about acupuncture gives it mixed reviews.  Some say that it may work in relieving some symptoms, but the majority recommend NOT using acupuncture as it may stimulate an already overactive immune system.  That's all fine and dandy, if you believe that MS is an auto-immune disease, which I do not.

I've had both health and holistic practitioners tell me I've got blocked 'flow' (for lack of a better word) in my body.  My acupuncturist (who is a doctor of Chinese Medicine) is also telling me the same thing.  Gets me thinking...maybe this blocked flow is related to a flow problem in my veins?...hmmm??

I've only gone for 2 need to have 4-6 in order to see if it will work.  And apparently, it doesn't always work for everyone, but I am hopeful it will work for me, as my legs have been increasingly stiff, spastic, and numb, and if it can relieve some of that, I would be extremely grateful.

Research out of China shows favourable results for improving symptoms of MS, according to my acupuncturist..particularily bladder issues and spasticity.  So I'm crossing my fingers!

On a side note:  although my legs seem to be worse since my angioplasty, I'm not suffering from the fatigue I once had. :)

Wednesday, April 6, 2011

Just Call Me the Bionic Woman

I finally made an appointment to see my only took me 8 months after my angioplasty to do it.  I was hoping that I would see some improvement in my walking, but unfortunately, that isn't happening...yet.  So I've been reluctant to go to the physio clinic because the improvements aren't very visible.  I know that's a really silly reason NOT to go...and in retrospect, I should have gone immediately after the angio, but hindsight is 20/20!

Funny thing is, when I came through the doors of the clinic, Heather (my physiotherapist) thought I was walking a bit better?? News to me...but then again, I've had other people comment on my walking??  Maybe I'M being too critical??  Maybe they're seeing something I'm not?!

Anyways, I have a new plan.  I've been doing the diet/supplement and complementary therapy piece for a while now and am comfortable with I'm adding the physio/fitness piece.  Really, it's long overdue and I mentally kick myself for not doing it sooner (I'd try to kick myself, but I'd lose my balance trying and probably fall "ass over tea kettle" LOL) So what's the plan??  My focus is to address the spasticity and severe loss of propioception in my legs (focusing more on the right's the worst).

That's where the bionic part comes in.  I'm trialling the Bioness L300  This device, which straps around my calf, just below the knee, stimulates the Peroneal Nerve which controls the movement of the lower leg muscles, causing it to raise the foot appropriately.  Heather is hoping that it will do a number of things for me:
  1. improve my gait (I have a slight foot drop problem)
  2. decrease the amount of energy I am using to move the leg with the hopes that I can take that effort and focus it elsewhere
  3. stimulate neural pathways with the idea that it may stimulate the nerves in my leg and foot helping with my sense of propioception (or lack thereof)
I have a schedule that I follow that will see me increasing the time I spend wearing the Cuff from 20 min/day to all day over a 4 week period.  After the 4 week period I have to decide whether I think the device is worth paying $6000 for .  Why do medical devices have to cost so much???

I have some reservations about the device and most of them have to do with aesthetics.  I never thought I'd say I was a slave to fashion but...

I have to totally rethink what kind of clothes to wear if I choose to use this device.  Skinny jeans/pants are out (can't pull the pant leg over the device), my favourite pair of Yoga jeans are out (can just pull the leg over the device but looks really stupid), flip flops and my most favourite ballet slippers are out (the sensor has to attach to side of the shoe) and if I want to wear skirts, shorts, dresses, etc. I have to be OK with showing the device.  I'm hoping the wide leg pants that seem to be coming in to style again will stay around for some time...I'm pretty sure the pant leg will slip over the device quite nicely!

And along with the Bioness L300, I have to do leg strengthening exercises and I have to do the balance exercises on the Wii Fit board...every day...I told Heather she had to tell me that my life depended on it, otherwise I'd be inclined NOT to do it.  I'll have to wait and see how that goes.

Other than that, this is Jamie Somers (aka Bionic Woman) signing off!

Wednesday, March 16, 2011

Legs?!...don't fail me now!

I've been having some issues with spasticity in my legs.  It seems to be getting worse???? :(  Very frustrating since everything else seems to be, either the same, or better.  I can still walk as far as before, but I feel like I am working's hard to explain why...just, that if I walk too fast, my legs can't seem to 'coordinate' and I fear stumbling (actually I sometimes do stumble).  And then I have to concentrate on staying balanced.  I'm just not smooth anymore...and I miss being smooth.

I went to see my neuro a couple of weeks ago to get the results of the MRI I had in January.  Seems, whatever I have been doing is preventing those nasty T-cells (?) from passing through the blood-brain barrier, because I have no enhancing lesions! Yeah!  My neuro attributed it to the medication she thought I was still on (I guess the MS nurses forgot to mention that I had gone off Copaxone last year!). When I told her I wasn't on Copaxone, she asked me 3 times over the course of my appointment, "when did you stop taking, Copaxone?"  Hmmmm...if I'm not taking any Copaxone, what could be bolstering my blood-brain barrier???

Now, I haven't told my neuro that I went to Germany and had the procedure done.  That may be a bit childish, but if the neuros are arguing that CCSVI and MS are two separate conditions, then I feel its irrelevant to them whether I have/had CCSVI or not.  Deep down, I know I should probably tell my neuro that I had the procedure done, especially in light of the fact that she thought it was the Copaxone that was preventing the blood-brain barrier leak.  Just not quite ready to do that.

So, back to my legs.  I told my neuro about the spasticity and she has me trying Tizanidine (Baclofen has the opposite effect on me).  I thought I would give it a try, in the hopes that it could alleviate the stiffness in my legs (honestly, sometimes I feel like Forrest know the scene... where he's young and has to wear the braces?...well, that's how it feels...although I sometimes think I can relate to Frankenstein as well. LOL)

So far, I'd say I'm not that impressed.  I don't like the way it makes me feel when it eventually kicks in...and let me tell you, I know when that is...I start feeling a bit 'woozy'...not really drowsy (which is one of the side effects) just...'woozy' and I stumble around like I am drunk for the next hour!  And then, when the medication wears off (after about 6 hours), my legs start feeling tighter than they did to start! I'm thinking, I'd rather deal with the stiffness than feel like a drunk for a few hours every day.

My neuro did suggest stretching, which I know I should be doing, but for some reason just can't seem to make the commitment to do it.  Oh well, I'll give the meds a few more weeks, and I think a visit with the physiotherapist is in order.  Maybe she can MAKE me do stretching exercises?! LOL

Tuesday, February 22, 2011


Yesterday, our school district had their annual Pro-D day.  When I signed up for the Yoga for Kids workshop I was feeling pretty good.  Unfortunately, the past week (OK, maybe the past 3 weeks) I have not been feeling up to 'snuff', especially my legs...number, stiffer, weaker...:(

I convinced myself that this would be good for me.  Isn't Yoga supposed to be good for us MSer's??  My real concern was the balance part because with the increased numbness my balance has been more 'off' than 'on'.  Well the room had a ballet bar and I made a point of letting the instructor know I had balance issues. (I wasn't in the mood to tell her I had MS...just yet)  The problem with having to position myself near the ballet bar was that it was in the front of the class and had a full length mirror along the wall.  So not only could everyone see me...I could see everyone being able to see me! Greeaatt :(

I actually did pretty good.  Yes, there were some poses I couldn't do...the ones where you have to balance on one foot?...pretty much a lost cause...although I did try! What gave me cause for concern was when the instructor, about a third of the way through the class, informed us that we should expect to feel some discomfort the next day, but NOT pain.  That's when I started to think this may not have been the best workshop for me to go to, especially because I had to work the next day.  And if 'normal' people' will feel discomfort, what am I going to feel????

Well...right after the session, I was physically tired.  I ended up leaving early because I wasn't feeling so great and I had to drive about 40 min. to get home.  I convinced myself that this is normal...I just did a workout, albeit Yoga.  At home, I acknowledge that I am definitely more tired and achy than normal...As the evening progresses, I convince myself that a soak in the tub may be in order.  This of course, makes me more tired, so I decide to retire to the 7:30pm!  Which is not that unreasonable of a bedtime, if you take into consideration that I get up between 5 and 5:30am and need about 9 hours of sleep to feel right. 

Around 1:30 AM, I am forced to hobble down the stairs to the kitchen where the ibuprofen is (really should have that stuff upstairs) because the stabbing pain in my hips, ankles, and shoulders just won't go away!  I swallow the last ibuprofen and hobble back up the stairs, crawl into bed and hope that the ibuprofen works quickly...which it does...for about 3 hours, at which time I now fully acknowledge that I overdid it with the Yoga and probably will not be able to work today! (Crap!) As punishment, I refuse to hobble down the stairs to get the Tylenol (having used up the ibuprofen) and endure the stabbing pain until the alarm goes off at which time I hobble down the stairs to grab a Tylenol, email for a TOC (teacher-on-call) and feed the dog.

The stabbing pains have now subsided, but the dull achy pain remains.  A reminder that I am not able to  do the things I could do, the way I did them, at the intensity I did...5 years ago.  Even if it's JUST Yoga! 

Will I try Yoga again?...probably.  Will I take it easy?...we'll have to wait and see...old habits die hard! LOL