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?

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.

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 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.