4 Months Today!!!

I know people can't see with their eyes anything physically different, but if you take my word for it, my body from the inside has done a 360. I no longer have crushing fatigue, my body doesn't tremor, I don't have an intention tremor in my hands so I no longer drop things or have difficulty doing fine motor things like putting on makeup, I have very little leg pain and spasms, I can think clearly now and not feel like I have a head full of cotton. It isn't all roses, I do have the occasional bad day of skin neuralgia burning (the hot oil splatter sensations) But I have heard and read that the repair and road back to good blood flow can also be painful and SLOW as it is coming back from sensation loss. On bad days I can feel a numbness to my waist but it feels like it is trying to get circulation but is having trouble getting the signal. I am a lot more patient than I was at the beginning, especially after my recent progress of my foot tremor going away, I really thought I would have that forever after having it for 3 years non stop. The bad days are usually when I am PMS ing or during menses. Very common, more inflammation. So instead of every day of the month being hard, now just a few are. That is okay though. I am still hopeful that I did this procedure early enough that I can continue to see results and maybe even repair to damaged nerves. I am excited to see my progress on my yearly MRI coming up in June. To see if I have any less lesions and most of all, not any more...

Foot Tremor

Update! I am hitting my 4 month mark soon and I am excited to share I am still having improvements! I have had a horrible tremor and numbness in right foot, and numb tingly legs for years and years. I thought the benefits and improvements received from surgery were complete and I was going to have to live with tingly tremor filled feet forever. Not really complaining as ants having happy dance in your feet was something I was getting used to really, and I was really happy with all the other improvements! However in the past 2 weeks (with lots of work I might add, like exercise/yoga, regular chiro visits, supplements, water, you know the drill) I have improved immensely and my foot tremor I would say is non existent most of the day! Two weeks without the tremor, I can't believe it. I really can't. Nothing, and I mean nothing, made improvements like these before I had the treatment. I feel so blessed.

MS WALK!!

Well yesterday was our first MS walk. I was pretty emotional that day, I teared up a lot. A couple reasons...

1.Matt couldn't make it.
His nightmare trip back home from a week in Florida for work (all meetings no play). Ending up resulting a major storm which stopped him from flying out of Chicago and he had to spend a night on a cot with 200 other people in the airport.
I knew he couldn't do anything about it, but I was still shaken and just felt like I wasn't read to do this on my own. I NEEDED him by my side as one of my cheerleaders.

2. It was my first official "event" where I was recognized for having MS.
I don't why, but that kind of shook me. I guess seeing this event put on for people who suffer was very emotional for me. Wow, I am one of these people.
I have Multiple Sclerosis.
For so many years I have suffered with a nameless problem, but now that it has a name, and a big walk to go along with it, well, it seems so real. A little too real frankly.

3. The support of my friends.
My team (Team Blood Flow) and their children decided to take a chunk of their day to spend with me, simply to walk and cheer me on. This meant so very much to me. And I really did need them. At one point the walk was tough. The walk is a total of two miles. After about three quarters of the first mile, my legs began to feel pretty weak and tired and all I wanted to do was sit down.
I thought to myself,
"what the heck!? I can't be getting tired YET!!"
But usually I can give my legs a good rest between stretches of walking, or at least stop when I am shopping to give my legs mini breaks.
I was very unprepared at how quick my legs became weak and this was a lot tougher emotionally than I had expected.
I felt so weak.
But inside felt strong, and my leg strength wasn't cooperating with the rest of my progress.
So down streamed the tears as I kept trudging on.
My friends picked up on that I was getting slower and slower and all of them dropped back and encouraged me to the 1 mile rest stop. At the 1 mile mark there was a rest place to get water and snacks. All I could think of was where the heck are the benches!?
We have MS people!! I NEED TO SIT!!!!
So I just plopped on the ground my legs tingling like mad and screaming with fatigue. Thankfully they didn't hurt though.
As I sat there I started to feel crushed, so through my dark sunglasses, I let the tears swell.
Honestly all I wanted to do at this point was just morph myself back to my couch and have a good old self pity cry.

But again my friends quickly picked up on my mood, and kept talking about how far I had come since last year. They were right, there was NO WAY, I could of done that walk pre liberation treatment.
I know I am impatient. And my brain remembers how Dr. Arata said post surgery that it would take a long time for my legs to get stronger and to not see this as a set back...
I know this.
But I still didn't want it to be the case.
So we started the second mile trek back to the finish line and went even slower if possible than the first mile.
There were two other ladies that were slower than me.
I thought,
"Come on! I am considered minor in the MS world, why am I bringing up the rear here!?"
I should be leading the pack! Screaming
"Wooh hoo CCSVI!!! Look at me GO!"
So again, my friends came to my aid and consoled me that not too many MS people are able to do the 2 mile walk and most are walking for other people, so I should be very proud of myself.
So....
I guess I am.
Even if it takes some time to get there.
Maybe next year I can lead the pack...

Chiropractor

So I have been going to the same chiropractor for 8 years. Which is when some of the symptoms started to take a significant place in my life.
So as I would get more and more strange symptoms over the years, he was one of my biggest advocates to keep pursuing and not give up getting a diagnosis. He was also one one my biggest cheerleaders to get the CCSVI procedure done. When I told Dr. Decamp about it, he immediately was intrigued and pro active about learning more. Then the next time I saw him, he had done his homework. A lot of it. He kept saying, it makes so much sense! Each visit he would always say, I just don't see why anyone wouldn't be first in line to have this done. I sure would be.
I agree.

But that isn't why I bring him up. I bring chiropractic up because it has always been the one thing that has helped consistently over the years. Dr. Decamp could spew the medial jargon as to why chiropractic influences your veins, and brain etc...
But all I know is it works.
I was finding the last few weeks my legs has seemed more stiff, more periods of pain, and the foot tremor just seemed to be that much more twitchy and irritable.
I found that when I would give my legs a really good deep self massage trying to increase blood flow the the legs and feet, I could in fact improve the tingling, numbness and twitching in my feet. For at least a couple hours anyway.
So I started doing that several times a day. I thought if I can manipulate these symptoms positivitly, maybe getting a chiro tune up would also be beneficial. So yesterday I went to see my chiro and showed him my symptoms chart and he agreed that this was something we should explore.

The result???

Sure enough, I had some amazing results. The days after my CCSVI procedure I felt incredible warmth sensations in random spots in my legs and especially in my feet. It would feel like suddlenly from within hot lava had filled the area. It was an incredibly weird sensation and I still struggle trying to explain it.
Dr. Arata explained these sensations would come and go as blood is finding it's way to these parts of our body. I thought it was just a one time deal as it had only been a few days post liberation. However after I had my lower back adjusted and a tune up at my neck and back, the next day I had these feelings of incredible warmth all over again and best of all, legs returned to no pain, very little to no tingling and weakness and my trusty old foot tremor than never stops became but a little tiny tingle in that spot.

So make a note...see your chiropractor regularly post liberation.

MS Walk CCSVI T-shirts

So our team for the MS Walk wanted to have cool t-shirts that promoted CCSVI.
So I thought it would also be good to use my blog address so others could get more information. So I designed these starting with the wheel chair sign... to get some attention.
We definitely got a lot of curious looks sent our way.
But they had rave review! I even someone want to purchase them. Which I think is a great way to maybe help raise money for others to have the liberation treatment.
They also sparked a few great conversations about my own procedure and hopefully it will help someone out there.

Roller Coaster called CCSVI

It is quite a roller coaster of emotions after CCSVI. Dr. Arata expressed there were two "milestones" for lack of a better word, to acheive post surgery. The first being within the first 2 weeks post procedure. If symptoms return within this time frame then it is a good indicator that the valves weren't successfully destroyed or torn allowing blood flow through. Unfortunatly doctors are unable to see when the valves are torn so only by hearing it or feeling the valve tear will they be able to confirm it. So it still may of torn successfully even if they weren't able to hear of feel it tear, so that is why if the symptoms have returned then it is known that it didn't tear. The second milestone is around the 3 month mark. At this time he expressed that there is a chance that the valves could heal back in such a manner that it will cause scar tissue by closing up the valve again. At this point your symptoms would come back. He said if this was the case, they could go back and at this point visually see the scar tissue and more easily distroy the valve. So I felt very hopeful, and excited as the two bumps both seemed to be able to be fixed....However I must say the optimism came and went. It is quite emotional always wondering, self checking, and stressing wether your symtoms were returning. When you have the liberation treatment done, some symptoms are relieved instantly like for me fatigue and brain fog. However some take time...a long time. So it is then when old symptoms are showing their ugly heads that I have a daily struggle and wonder, am I restonosing or do I just have to be more patient?

Am I Pregnant?

Wednesday I hit the 6 week post liberation CCSVI surgery.

It is a wonderful time, but tough time!

I feel amazing.

But until I hit that second milestone I always wonder?? Is it coming back?

There is a fear until about 3 months of scar tissue creating a new valve. Also we are unsure of what the long term road will be for this procedure.

No, I am NOT pregnant, and don't hold your breath. But it is the best way to help explain it. There is a time in the early weeks that it is too early to see the stick turn colors to confirm, that you could honestly go either way. Sometimes during that time you feel, "ya, this definitely feels like all the other pregnancies" then you find out you aren't and you aren't really surprised that you aren't pregnant. You just don't really know for sure.

So that is how I feel now. I am not really sure???

So unless I had another venogram to confirm (like taking a pregnancy test) I seem to continue to analyze my symptoms.

But as for now. There is no denying that my leg pain is completely gone. My energy is great. My vertigo, tremors and morning headaches are still gone.

Tingling is still there, but hey, no complaints.

So I am trying very hard to continue to put my faith in Heavenly Father and know that whatever may be...is supposed to be.

And just be grateful for each blissful moment I am given when it is there.

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

My New Self

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.

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.

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!

My Disney Day

Ahh..Today was just wonderful.

Two days post vein surgery

and I feel like I am 19 years old and

full of energy.

And here at Disneyland I feel full of childlike excitment...
I just want to keep pinching myself because I can't believe how amazing I feel.

How different I feel.
What better place to share this awesome new energy!

Matt was amazing making it the

happiest day for me.

We ate at all the fancy restaurants I have always wanted to eat at.

We strolled through the shops, again and again.

We rode the rides a couple times in a row sometimes.

(which we learned was a little ambitious as I was SORE

afterward and it brought on a serious headache)

It was just so fun to laugh,

smile until our cheeks hurt and just spend the day hand in hand.

And just celebrate this day of amazing miracles.

It was just a really great day.

Day Three: Recovery Day

Today we just hung out and recovered.

I had a very easy day.

I didn't hurt...yet. (that came later)

I had to be careful with my site at the femoral vein, being on blood thinners it was very important I didn't pull or stretch that area causing it to bleed. And they had to put my IV in my hand so I got a doosy of a hematoma bump there, but I am used to being a freak with the IV it happens with all my baby births.
But it was this little bump that when they wheeled me out, Matt took one look at my hand, got so faint I couldn't even talk to him about how great I felt, until he caught his breath and seriously bring color back to his face and take deep breathes.

No exaggeration here either I am afraid... I am totally serious. I actually said, "are you for real!?" The nurses always say (as he has had this reaction with all 3 babies) and says they are brought on by seeing someone he loves in pain.

Good thing he wasn't allowed in while they were destroying my valves!

Other than that I felt really really great. When I woke up the after surgery my head felt so clear and I had for the first time no headache behind my eyes.

I felt so refreshed I would of done our Disney Day today...but Matt just gave me his,
"Jenn your talking crazy talk again" look.

So we just hung out on the bed and watched t.v. and just chilled.

It was actually pretty nice.

Finally in the afternoon we had our appointment with Dr. Arata. I couldn't wait to tell him he was gave my life back and how great I felt. I walked into the waiting room and found a gal that I had seen at the pre op appointment. When we were both in the waiting room two days prior, she was in a wheelchair. Today...she walked in to her post op appointment.
I wanted to jump up and hug her. We started talking and like excited school girls about all the symptoms that have gone or are changing.

It was incredible to see.

When I met with Dr. Arata, he just sat and listened as I joyfully explained every detail of how I have felt the last 24 hours. He sat with a smile on his face and just listened as I happily erupted all my excitement as fast as I could. I apologized for being so excited, as anyone that knows me it was a very animated moment. But he just chuckled and told me he was thrilled for me. We discussed further about blood thinners and other details and then told me he would like updates regularly for as long as is convenient for me.

So we then felt it was a good time to go celebrate and go to In and Out.



When we go to Disneyland we always stay at the Candy Cane Inn.
I HIGHLY recommend it.

Clean (and I am freaky about that)-Great Great Price-Free shuttle-Free Big Breakfast-Nice Pool-Clean (it deserves being said twice)-Close, one block from Disney Main Enterance-and so Gosh Darn Cute!
...it has a beautiful cobblestone road, gorgeous flowers and ivy climbing up the walls...my favorite.

Our room was right behind this cascading ivy...love it.
So it made hanging out really nice.

Day One

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)

What If's

Just 4 more days until we leave...

I can't wait.
but I am really nervous...very very nervous.

what if
I am not blocked and they say "sorry lady, no problem here."?
what if
they tear my vein or some other freak incident occurs?
what if
it really really hurts?
what if
I need a stent and I have to tell them no, is that the right decision?
what if
after spending over $10,000 for this procedure, our car gets in a wreck, our house floods or the kids cause a freak accident and all our furniture is ruined...(okay that may be a stretch) and then we need that money for such emergencies?

and my biggest fear of all...

what if it doesn't work?

I have felt that Heavenly Father has been holding my hand through this entire experience
...since the beginning...
but my hand is still shaking with fear's...or tremoring. (a little MS humor)

I am trying to squeeze all the faith I can out of that mustard seed.
Allowing me to be able to stand and have the courage to conquer these fears.

Matt told me tonight that

Real faith is when you get off your knees,
and then you do everything in your power
to bring about what you are praying for.

So...even with all of my what if's?
I will now have faith AND courage to stand up and do my part.

even if
my legs are shaking...
but with fear this time and not from MS.