Wednesday, July 14, 2010

3 weeks Post Procedure

I may have just a wee bit of more energy. I am still happier. I am definitely sweating more.

Heat is horrible. But it is really Freaking HOT! Not just MS patients are miserable.
I have no regrets. I am so glad I had the procedure done....... and maybe, Just Maybe, my MS won't progress any more :-)

Thursday, July 8, 2010

2 weeks post CCSVI procedure

I still don't have anything drastic to share but I want to say this....... I have been happier. Is that a result of more blood flow? Or Placebo? I don't know but I feel happier. :-)


Wednesday, June 30, 2010

1 week after the CCSVI angioplasty

Last week on June 23rd I had the CCSVI procedure. It went seamlessly. Nice folks in the clinic. My friend Lara and my husband Ozzie came with me. Which was good because I was very anxious and a bit scared it being a serious medical procedure.

Long story short, they found two "mild" stenosis, one in the left jugular and one in my Asygous vein. I'm told mild is 30%. The doctor treated both with angioplasty.

I'm glad they found what they were looking for and I'm glad they treated it. Also as the doctor who treated me said, " We have seen people respond even when the stenosis is a mild one. "

There were no miracle "Youtube" Recoveries. So I will hold off on making a post video as yet. Maybe in a month?

I did not and have not yet, as of 1 week later, felt any clear improvements. I have some maybe's but maybe's could be placebos because I am so desperate to see improvement.

List of maybe improvements:

-Fatigue? maybe a bit better (but it is 20 degrees cooler outside that always helps)
-That buzzing sensation down neck gone ( but over the years that has always come and gone.)
-Sweating....... I seem to sweat easier. (I'm a sauna taker, before procedure I didn't sweat easily it took a long while and some times several trips in. Last night the sweat kicked right in.)

So as you can see it is pretty slim. However I want to say that initially when I discovered CCSVI all I hoped for was the possibility of halting progress. I am dealing with what I have now. Knowing that I won't get worse would be fabulous!

Only time will tell.... and maybe progress is slow in coming. I certainly hope so.

I also want to thank all my wonderful friends and family for supporting me during this adventure....... because it certainly has been an adventure. I am so lucky to have a community that backs me up.

Friday, May 28, 2010

Baseline video Pre Procedure...

This is kind of a funky video in that the sound sucks. But you get the idea and see how difficult walking is for me on a good day on even surfaces.

And on uneven surfaces...

Thursday, May 27, 2010

My life with MS right now

(Keep scrolling down to read the whole story)

I have MS. I was diagnosed 20 years ago.

I could tell you all the details but it isn't that interesting. To shorten the whole story it wasn't until about 5 years ago I could see it was going to be a problem.

The biggest problem I have is walking. I was an art teacher and on my feet for my job most days. Lugging bags of clay, in and out of dark rooms. Someone suggested I try for SS disability. I was told it is very difficult but to keep trying. Surprisingly I got it first try. I guess MS looks good on paper. I'm glad I did because it got me on Medicare and when My husband Ozzie lost his job I was covered by at least some Insurance. That was 4 years ago.

Since then walking has gotten more difficult. But even worse is the fatigue. MS fatigue is hard to explain to people. Who at the age of over 50 isn't more tired then they were. For someone with MS fatigue is very bad. On a bad day, I walk across the room and I need to sit down and rest. On a good day, I can walk a little further like into a store and down a few isles and then suddenly I'm looking for a chair to rest in.... It sucks.

For the last 2 years I've been pretty depressed about my future. I rely heavily on Ozzie. He is a dream Man. Since leaving my work situation I have tried to sell my self a little more as an artist and do 3 small art shows a year. I have always been a routine and ritual person. Making art stuff for these shows has given me a focus and routine to get up and going everyday. This has gotten harder and harder and I become even more reliant on Ozzies help.

I also have a big ego and vanity issues. I want to be able to take care of myself and not rely on others for the simplest things. I haven't been able to let go of my vanity even though it is detrimental. Which leaves me frustrated and teary. Periodically I have breakdowns.

Ozzie who I have been with since 1980 has been the most loving supportive and super human man through out all this MS shit. Everybody should be as lucky as I have been. I've often thought I have been so unlucky, poor me, poor me with my MS. But on the other hand, I've been so lucky that I met Ozzie.

But now I have hope. Another long story shortened. Last September on one of the many many MS sites I read regularly. I read about CCSVI. .....

Here is a link that will tell you all about it:

I've been obsessed with CCSVI since then. It makes so much sense! Determined to have the procedure done. I managed to get my name on several lists for potential treatment. It became a political soap opera. It seems (whether it is or not) that Neurology is very attached to ownership of MS. So time after time doctors who are treating this condition on people who have MS were virtually shut down by neurologist complaining that Interventional Radiologist have no business treating MS patients.

But then I ran across these videos:

I've read about dramatic results but this is the first time I have seen it. Through a series of internet snooping I found the women on the video on facebook. I wrote her and asked who treated her.

I now am so excited because I have an appointment!!!!!!!!!!!!!!

June 23rd.

For the first time in a long time I have hope for possible physical improvement. That's the point of this blog I am going to document my progress here.

So wish me luck.

xxxx's to all!

(Keep Scrolling to read More Posts!!!
Or if you don't see more posts click on the "


at very top of page)

Before CCSVI Liberation Procedure Chart

( Later I will add "After" )

1.Before: Right Foot almost completely numb and thick feeling. Occasionally left foot feels numb.

2. Before: right leg stiff, weak & limited in movement

3. Before: Because of Right Foot drop and weak leg and lack of coordination walking is very difficult. Cane and foot brace mandatory for any distance outside of the house. Uneven surfaces a maneuvering nightmare.

4. Before: Can not look up or around while moving dizziness & room spins. Need to hold on to something to look at the sky. Easily thrown off balance. Must turn or look slowly.

5. Before: Extreme mind numbing fatigue periodically throughout the day. Recooperate for 20 minutes after 10 minutes of activity.

6. Before: Heat busts my butt. Can’t do anything but sit or lay down.

7. Before: Constant ringing in ears.

8. Before: Cold feet. In winter almost painful especially the right foot.

9. Before: Occasional roaring in ears. Like when you yawn, but I’m not yawning.

10. Before: No lift to right leg which makes climbing stairs an awesome task to contemplate. Like knee, Hip fexors don’t lift either.

11. Before: 2 toes on Right foot turn blue… same toes that have no lift.

12. Before: Totally spastic walking first thing in the morning.

13. Before: Occasional Brain fog. Can’t think quickly or verbalize quickly often get tongue tied.

Monday, May 18, 2009

And More Fun & Funky Earrings!!

Click on Image to see close-up! :- )

Group A