February 2011


Where do you see the water level at this point?

 

My friend Sandi sent me an Email the other day. She wanted to know more about things, how I was doing, cost for CCSVI. She told me she was trying to make a wise decsion. Soooo……it got me thinking…….

“Do I give people the wrong impression that things are better than they really are????”

  

Dun-no???

 

I hope not…… I still hve MS…… I still walk funny.

So I wrote Sandy back……just to tell her I’m feeling good and happy.

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 Hi Sandi,
 
I have not spoke to anyone from Israel for some time.  I will forward you my last email exchange w/ them.
 
I paid $10,500 for CCSVI at Pacific Interventionist.
($2500.00 – MRV/ $8000.00 CCSVI procedure) 
Dr Arata. performed the procedure.  I explained in this last update why I chose him over the Hubbard foundation. I am now in the process of billing my own insurance myself.  Dr. Arata provided me with a procedure synopsis and the appropriate insurance codes on the invoice.  Were still working on the Letter of Medical Necessity.  I may just turn in what I have now and see if they will require the LOMN later.
 
His protocol attacks the valves that interconnect the veins. He does a little more than just balloon your veins. The “valve” is where CCSVI derives from.
 
Fix the valve…..and the possibility of re-stenosis is greatly decreased.
 
Two weeks out from CCSVI now and I’m feeling good.  My “Lokomat” workout this morning was my best yet……although when I am tired……the communication to my legs is just not there.  That’s MS and I know that.
 
CCSVI has helped me recover from these hard workouts more quickly.  I’m also seeing improvement w/ heat sensitivity.
 
I’m a glass half full sort of guy and I hope that I have not given people the wrong impression of the severity of my improvements.
 
I have always remained consistent in the fact…that….these procedures are not a cure for MS……but just things that have made my quality of life much better and enabled me to keep working and providing for the family.
 
The last I spoke with Isreal….they were fooling around with liposuction and working on a new patent for their “Improved” ASC/MSC protocol.
 
CCSVI has given me a little more life here…….I’m going to see how much it will give me over the summer………then, I may think about giving Slavin a call and seeing what is the latest with Stem Cell. I still believe that Stem cell is the key to Meylin repair that every MS patient needs.
 
Ever since my stem cell (Sept 2009), I have been stable, happy and working a ton. I think MSC did give me greater Neural communication. It’s been awhile and I still seem to be making small strides in the gym so I’m hopefull for the future and am also broke again from CCSVI costs.
 
Stable for me is a win.
 
Is it CCSVI, MSC, Tysabri or a combination of all three????….
 
I don’t know…but I feel good, am working/providing,happy…and that is just where I am right now.
 
Your proaction is what makes you wise Sandi. And my repsect to you for your continued fight with the MonSter.
My prayers back at/with you.
 
Be Well,
Todd

In January, 2010… I posted about “CCSVI and all the hype.” I have been looking at the procedure ever since that day w/ much interest. On 2/12/2011…I finally pulled the trigger on the procedure.

Just like "Elmo"......CCSVI looks to have the "Staying Power" w/ the MS community

Well……..happy new year everyone.

Been a long time since my last update and I apologize.  Everyone that has MS knows it can be a fulltime job……..an in the last six months, I’ve definitely put in the overtime…literally

Family, Work and MS rehab has totally engulfed my life. I try to get in 8 hours of rehab/week…..Then, after all the travel, workouts, and PT/strength training…..there is very little time left to write.

My last post looks to be November and so to start: A little update on Montel and the “Wisconsin Project”. After looking for a follow up the last few months…The best I can deliver is this:

http://tcnl.med.wisc.edu/pubs/2010-Wildenberg-fMRI-BiB.pdf

A summary of a twelve person study from the University of Wisconsin using what seems to be the technology in the Montel video.  This summary though, is rather old.

Or this:

A link to “Brainport Technologies” website:

http://www.wicab.us/technology/

This company is dedicated to the technology and if you navigate through their website, you’ll be able to read clinical publications which are sort of promising.  I have searched all over the web to find a “follow up” to the Montel Williams story this last November but I had no success.  If somebody can find something of a progress report w/ regards to the “Wisconsin Project” or Montel’s progress w/the technology……I’d love to look at the results

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Update:

I started back at “Pushing Boundaries Gym”, (Redmond, WA)  back in October 2010 and I have continued with “Lokomat” gait re-education 3X/week since. Things are going good but I wish I had not taken 3 months off prior to Oct./2010 (due to lack of money) because I lost a lot of strength during that time.

This last holiday were very busy for the family and I worked a ton of overtime in the last six months of 2010 to catch up financially. My daughter now drives and so I gave her my Buick and I bought an old BMW which runs well and so far has been very reliable.  The best thing about both cars is that they are paid for and I can drive the BMW comfortably.  The BMW has an emergency hand brake as opposed to an emergency foot brake on the Buick. Hopefully you can understand how that would benefit me.

On my MWF rehab days, I drive in excess of 75 miles and spend approximately 2.5 hours in the car. Traffic in this town is crazy but you do what you got to do when you’re sick.  My normal work commute is 58 miles.

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Why did I wait for CCSVI?

#1. Money

#2. Risk of re-stenosis associated w/ “the standard liberation procedure”

#3. A better Protocol (we still don’t have an effective scan process down yet)

Where and who you get the CCSVI procedure from is still a big deal right now.  As far as I know….there is only one person in western Washington doing the procedure?  His name is Dr. Torrance Andrews.  Dr Andrews has not been doing the procedure for that long. When I first inquired at Dr. Andrews’s office last September he was just getting started and I was put on a waiting list that was over 120 people long. I checked in with his office numerous times until December.  Never to have my phone calls returned from his support staff……I then looked toward  out of state CCSVI options.

One of the biggest CCSVI “fish” on the west coast is the “Hubbard Foundation” located in San Diego, CA.

Link:

http://hubbardfoundation.org/

Dr. Hubbard and Dr. Haacke in San Diego are the real deal and between the 2 of them they have performed hundreds of CCSVI procedures. Dr. Haacke has a CCSVI protocol named after him and is studying the efficacy of his CCSVI procedure/protocol.

Another great website for CCSVI info is:

http://www.thisisms.com/forum-40.html

The “ThisIsMS” website has an entire forum dedicated to CCSVI and members log in and share their experiences from around the country and the world.

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Patient Experiences:

One thing you learn real quick about CCSVI is that no two MS patients have the same out come. Some experience a myriad of lessoned MS symptoms and other MS patients experience nothing.  A few even report that they felt worse after. (But not many)

CCSVI makes sense……..blood flow issues are serious and could cause a number of problems if left untreated……and if those problems get worse…..who knows?????

This was my line of thinking……..Could I have this stenosis?????…….Would I see some relief of symptoms????………I’d at least want to get a scan (all be it…..scans could sometimes be misleading)…………

What if…???????……I kept asking myself

And you just keep wondering.

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Leave it to me to ruin a 5 day romantic getaway

Julie and I had planned a little getaway to Palm Springs in early February.

While I continued to look for CCSVI weeks before we were to leave……..I stumbled across this:

http://www.facebook.com/note.php?note_id=495917362733&id=182832983940&ref=mf

Dr. Arata had visited Seattle at the end of January, 2011 and gave a presentation about how he goes about treating CCSVI a little differently than all the others.

I called Dr. Arata and he informed me that since he switched his protocol in July/2010…..he believed his re-stenosis rate to be under 10%.

Those are great ##’s when compared to CCSVI “Liberation procedure” (or the original CCSVI protocol)

Dr Arata treats his patients w/ slightly larger balloons and attacks the valves that surround the affected blood vessel.  He claims that the blood vessel valve is almost always the cause of the stenosis in the area.

Dr. Arata is located in Costa Mesa, CA.  Julie and I were going to be in the area anyway, so why not try and reach out to him and see if he could squeeze me in.  I also liked the fact that he had been performing CCSVI for over a year. That already makes him an elder statesman in this, relativly new, CCSVI  procedure being performed by Interventional Radiologists the world over.

http://pacificinterventional.com/arata.html

After about a 40 min. Q and A with Dr. Arata I was convinced.  The MRV clearly showed both my jugulars blocked (head/brain bloodflow)…..but Dr. Arata said the Azygos vein (spinal bloodflow) is much more difficult to see until he performed the actual procedure.

http://en.wikipedia.org/wiki/Azygos_vein

During the procedure you are lightly sedated and the whole thing takes about 3hrs from prep to discharge. Dr Arata gave me some blood thinners to take for two weeks and then I should be good to go.

Some of the noticeable improvements I saw just days after receiving the CCSVI procedure were:

– Slightly Better Balance

– Slightly Better Fatigue

– Much Better leg muscle tone (spasticity/stiffness)

– Much Better Heat sensitivity

– Much, Much Improved Sleep

Maybe even more symptoms to come……..Thank you Dr Arata.

A little neck soreness but that seems to be going away.  I went right back to work and am feeling really good right now.

 I’m very hopeful that I will be able to spend more time outside this summer and not inside the house chained to an air conditioner. Already seeing a difference at work.  I’m able to do more stuff on the job and not with as much leg muscle tone (spasticity/stiffness).  Can’t tell you what a relief that has already been. 

Now all I have to do is find insurance coverage for all this.  Should be a piece of cake ….right? 

Right…… 

Be Well

Todd