First Doctor Update

Dear Dr. Ararta,

Hello! I wanted to update you at my two and three week mark. Overall I have feel more wonderful than I can explain!

Procedure Date: January 5

Pre Procedure	2 weeks	3 weeks
Tremor in foot, especially bad in the bathtub	Tremor is faint, doesn't act up at all in the bath.	Tremor is still weaker, but occasionally it will freak out. Still not affected with heat. I hope in time it will go away more as it can occasionally cause painful cramp in my calf.
Body Tingles and Twitches and all the time, like ants having a party	Tingles and twitches aren't as crazy and feels more the ants are having a siesta.	same as week two.
Fatigue- EVERYTHING was an effort, extremely debilitating. Felt like I had mono everyday. I NEVER felt refreshed.	Fatigue totally gone! This was so drastic for me. I feel like my head is so CLEAR!!! Feel like I can get 10 times more accomplished in a day. Happily, this is my biggest symptom improvement.	Energizer bunny still going strong. If I restenosis I think it will be the lack of my head clearness that I will notice most. I am still amazed at how clear my head feels. It has been so since day one and never changed.
Morning headache behind eyes and back of skull. Felt head was full. Felt it the minute I woke up, resolved as the day went on.	The MS morning headache is gone!! However I have been getting headaches but they have felt different and seem to be related to my neck pain.	The MS morning headache still gone! The neck pain is much less and my headaches associated with them have gone. I have found if I bend over with my head down too it will cause an instant headache behind my eyes.
Leg Pain, my worst symptom other than fatigue. Spasticity. Prescribed baclefen for pain and spasms.	I haven't had pain in my legs. So after week one I tried going the Baclefen pain was bad the next day. At week 2 I tried again and have no pain.	Been off Baclefen for 10 days and still no pain. This is amazing as I have been struggling with this the longest.
Freezing feet! Discoloring of feet	Went skiing and still had warm feet and didn't feel like they were frostbitten! Never never happens.	My feet are kind of strange. Once in a while they get spots of incredible warmth almost too warm. They also are a nice pink but a splotch pink, like they are working their way there. Still warm though!
Heat Intolerance, another very bad one for me. I needed to lie down after I stepped out. A day I had to shower, was always a bad day.	I can't believe how different I feel even after a hot hot shower! I am not tired and it doesn't affect me at all now.	Same as week 2
Bladder- periodically painful spasms, urgency	No spasms less urgency.	Same as week 2
Insomnia I was beyond exhausted but could NOT ever fall or stay asleep.	I no longer take sleeping pills. I naturally get tired and can fall asleep and sleep through the night. Changed my sleeping posistion from off of my stomach which keeps me stirring a bit but always fall back asleep.	Still sleeping well without any pills. I raised my bed it seemed to help with my sore neck.

Post Procedure Symptoms

When getting just about any other procedure done, for example when I had and ovarian cyst removed, you receive a page print out about what to expect, what to avoid, and when to be alarmed post procedure. The disadvantage of being one of the early ones to receive this particular procedure, there isn't a gold standard yet of what to expect post procedure in terms of recovery. I understand why this wasn't available to me. However it became tough when you are already pre occupied with the fear that your valve didn't tear during those first 2 weeks. I hope with my account and others maybe there can be a more detailed future "post procedure care" paper.

Personally, I didn't experience any pain in my neck for a couple days. However if I did anything that would put any to strain to that area it would be quite painful. Almost like spasms. I would really ache and sometimes it would cause a wicked headache at the base of my skull. That lasted on and off for about 3 weeks. I learned quickly that my beloved position of sleeping on my stomach was not helping and once I gave up that position my neck pain and headaches greatly improved. Which I had read that sleeping position does a number on your jugular veins and should be avoided anyway.

It didn't take much to strain it either, lifting a laundry basket, scrubbing the counters or a stubborn pot would irritate the muscles surrounding the collarbone and up the neck, and it would radiate up to my skull in a form of a headache. I also felt deep aches in my chest.

Seeing my MS is relatively minor compared to many who undergo this procedure I was probably a lot more active and did more regular things than most. Therefore more aches and pains would follow. So I would suggest mentioning to your patients that they may feel neck pain and even headaches for several weeks. I of course was alarmed that maybe there was a problem but I wasn't having any regression in symptoms so I hung in there. Sure enough they went away.

Dr. Arata, I am overjoyed by my progress and feel extremely blessed that I was able to be your patient. Thank you for all you do and your diligence for moving this forward. You are truly saving lives, by bringing quality back to them. Thank you!

Sincerely,

Jenn

First Milestone Achieved

Usually keeping up with the blog
has been tough because
I haven't felt well enough and most of all have enough energy.

Now...

I feel like I have so much energy
I haven't slowed down long enough to update.

So I am now
18 days Post liberation Procedure.
It hasn't been smooth sailing all the way.
I didn't just wake up and turn into the biotic woman...
although it would of been nice to wake up to a new ripped body.

I have been struggling with neck and chest pains and headaches
from all the tugging and pulling and balloon tricks that went on in there.
Which leads to some
big headaches.
But I am trying to keep remembering it should be normal...

I say "should" because....

who know's?

unlike anything else "medical"
they send you home with an aftercare sheet
that tells you what to expect and
how to take care of yourself.
Well this being such a new procedure,
for my sons stitches I received more post procedure information.

So there is no gold standard of what to expect yet....

a little more lonely out here when you are one of the first.
But that is the trade off.

I will take it.

I needed to get past my first milestone.
The doc said if I went back to square one
by two weeks then we know that the
right valve didn't tear or break.

I am confident to say,
I believe I am out of the woods as things have been
progressing forward not backward.

And by the way my neck has been feeling,
if he didn't break it... then something else in there did.

So....Yippee!

My next milestone is at the 3-4 month mark.
There is a possibility scar tissue from the
surgery that can cause another blockage.
So I would know by all my symptoms returning.

So I worry. Every time I get a little tired,
or my foot twitches ...so...
I worry.

New Me

So I don't even recognize

my new unblocked self.

I keep surprising myself...
a few things I have noticed.

Before:
I found waking up early the death of me.

Now:
I naturally wake up early...and REFRESHED!


Before:
I hated to cook, I loathed it because my legs hurt to stand there, my brain fog made it confusing, and my fatigue made me wonder why people called this a "hobby".

Now:
I have honestly baked and cooked more in the last
two weeks than I have in the past year.
Just ask my neighbors, and....I find it enjoyable!! No kidding.

Before:
Exercising was never enjoyable, nor is it for a lot of people. But I used to try and I don't know if it is because my poor tiny vein was trying to get blood to quickly rush through it as I worked harder, but it would cause debilitating fatigue after a short while. I used to wonder what people were talking about when they said they would become more energetic afterward. Ya..no. Not me.

Now:
I have been speed walking in my cutest form everyday on the treadmill for a half hour for the last week. I now sweat more than ever, which the doctor said I would notice. (don't ask me to explain why?) And I feel really good afterward! My fatigue isn't there like it was, I am tired, but not I have mono kindof tired. Incredible.

Before:
Showers always made me exhausted. So if I was clean that day...I was wasted for hours. I noticed it most the last couple of months, but I could say I have always done poorly in heat. When Matt and I were in Florida, Mexico you name it, I always had a bout of debilitating heat stroke. I always thought it was stemmed from my sisters red hair gene in me that made me intolerant. Also the hot bath would always help my leg pain, but in return my foot tremor would go from mild to crazy when I was in the heat.

Now:
What a difference! I can actually jump out of the shower and run downstairs to grab something out of the dryer, race back up the stairs without holding the handle, and still feel normal. This may all sound weird, but it is a huge deal to me. And my foot tremor remains unchanged when I have baths now.

Before:
I had horrible fatigue but what's worse, I had insomnia. Horrible all night insomnia for years. I have had to take Advil PM for the last 4 years, with little help. Which I have now discovered is one of three CCSVI classic signs.

Now:
I get naturally tired, (all that baking and running up the stairs catch up with me) so I no longer need anything to help me sleep. And I sleep all night long.

These all seem minor to some...
but for me I went from

tolerating life to loving life.

Support

My first day back to the office
the gang threw me a surprise party...

I was so touched.

I am so incredibly thankful to everyone for
the support and all the
encouraging cards,
uplifting emails,
listening ears,
a hilarious "going away package" (wink wink)
and even beautiful gifts sent my way...

I have appreciated it so much.

This has been as big deal for Matt the kids and I
to go ahead with this new procedure
and it has meant so much that you
all have been
so supportive.

So a big THANK YOU!

Day Two- Liberation Day

(this picture is showing how the vein isn't flowing,
in fact it started to break off and make alternate routes
and highways in order to get more blood flow.)

So the morning went fast,
and I don't remember much up to after I woke up.

I learned my lesson from yesterday
and asked everyone wearing a badge

when were my drugs coming??

So I will start there.

Dr. Arata found that my left and right jugulars were blocked/narrowed/ or stenosed. My right being the worse.
He said a normal vein size is approximately
19mm

Mine is 8mm.

Yaaa, now I know why I didn't score higher on my ACT.

He was able to snap/pop/destroy my left jugular valve.

But he wasn't' sure if he got the right side as it was so much smaller which made it thicker and harder to snap.
He said he might of or might not of.

Because it is a guided procedure, the only way to know is by feeling it snap or hearing it...

I know, gross eh?

So the bad news is within the next two weeks, if my symptoms all return we know it didn't snap open and I will need to return to get the procedure again to try again to get it to break.



These are pictures of the balloons pumped up in my vein.


So the verdict.

I feel flipping fantastic.

Leg Pain:
Mostly Gone

Fatigue:
Gone

Brain Fog:
Gone

Bladder "Issues"
Mostly Gone

Tingles
Mostly Gone

Limb Weakness
Gone

Foot Tremor
Almost Gone

Morning Eye Stabbing
Gone

Intention Hand Tremors
Gone

Heat Intolerance
Gone

Burning Skin Neuralgia
Gone

I feel like I am 15 years younger. I just feel "normal" again, and it feels amazing. I do have a doosey of a daily headache but we heard is from the blood thinner injections. He also said it could take months for your body to see all the positive symptoms.

I feel so blessed.

Day One - Part 2 consultation

So after my

big bad test.

We had an consultation that afternoon
with Dr. Arata about the procedure.

In a nutshell.
(I will try to explain this the best I can.)
As I mentioned before, they find in almost ALL cases of people with MS, they have CCSVI
(a narrowing in your jugular or azygo veins)
But unlike other doctors performing this brand new procedure. Where they focus on angioplasty of the vein. They are focusing on the valves.



He compared it to a toilet flapper.
Ever seen on of those? When you flush it goes up and down.
This valve is what opens and closes allowing your blood to flow freely from your brain.
Well Dr. Arata is one of the few doctors who is focusing on the malfunction of this valve not working properly.

How you ask?

Well by destroying it.

Um... Don't I need that valve?
so... I don't know, my head doesn't fill with blood?


He continues to explain that by doing this, the valve is stretched open until it snaps open. And stays open. Like a rubber band. Doctors now, and how he previously preformed the surgery, they only stretched it to normal size through angioplasty.

However they were finding in 50% of the cases it made it's way back to original size because of it's rubber elastic qualities. Therefore by snapping it open it restore flow permanently.
Allowing my poor brain to BREATHE!

I need all the IQ points I can get.

So am I blocked. Will this help me??

He said that I showed a blockage in both jugulars
but would be able to see even better during the venogram.

(inside happy dance)

Since they started to use this method
in July their restenosis rate (the elastic shrinking again) has been only 1%.

So still unsure how my head won't fill up with blood??

As unlike a gall bladder or tonsils,
you kind of need this flap.
But he explained that my need to get my like back
from the grip of Multiple Sclerosis, that trumped needing the flap.

Well put I say.

Okay so I don't need it, but does my body know that?

We discussed how standing on my head is a big no no.

No prob. I can do that.

But actually you put your head upside down a lot more than you think.
-bending down to do
yoga
(well ...when I get that spurt to get back into it)
-bending down to
throwing your head under the tub faucet to wash your hair.
-bending down to
look for your kiddo's lost shoe in the big mess in the closet.
-bending down to
hair blow your hair upside down to get that voluminous look.

So I can't be a yoga master, wash my hair in a flash,
be the house shoe finder and have cool knockout hair.

That is okay. I will manage.

So after our questions were answered.

We were ready.

Day One- MRV

As we were waiting to go in to get my MRV,
Matt says so how is the test done exactly? I said, I wasn't sure....

Oh boy. I should of checked.

It was probably good I didn't do the research on this one, because I would of never attempted without sedation as that is just plain crazy.

It is much like a MRI but this particular machine is
4 times stronger
than the best MRI machine and is so specified, they won't be missing anything.

But the process...
well there needs to be some advancement as I believe I can sign up for that again.

He begins telling me to lay down on the skinny table and asks if I am claustrophobic?
um...YES.
(but I immediately realize I should of made prior arrangements to get some
"you do anything and I won't care" drugs,
and was afraid I would prolong the test if I needed to get any so...)

I followed up with,

"But I will be fine"

phuhh... ya right.

Then he said I just have a few gadgets for you then we are all set.

Gadgets?

So we began with
gadget number ONE:

He placed a hard plastic neck brace snugly placed around my neck.

Then gadget TWO:
He proceeds to place a hard plastic cage
around my face with slits to see through.
(Man in the Iron Mask- ring a bell?)

Finally gadget THREE:
A heavy blanket/contraption to lay on my chest.

Finally he says,
"Your all set! Don't take deep breathes,
you need to stay steady and still.
And the test
will take approximately 2 hours."

Are you kidding me?

So after a few panic attacks and some MAJOR pep talks I went to my happy place.
When that didn't work,
I spent the time doing simple math, reorganizing my cupboards, and reevaluated my budget all in my mind,
and anything I could do to keep my mind busy in order to keep from
going seriously mental from my new worst nightmare.

It was one of the hardest things I have ever done.

Now when I am asked if I am claustrophobic. I need to say

"yes, where are my drugs?"

Day One...Complete. (barely)