Saturday, January 15, 2011

26 days....a friend checks in

Well it is 26 days until I am treated and the days are going very slow. I received this CCSVI report from a friend who was recently treated and I thought I would share it with everyone. I edited out some specifics. If you want any information please contact me and I will see what I can do. Congratulations to my friend and I am so happy things went so well for him....I CAN"T wait for my turn....

I want to give yall some feedback about my CCSVI procedure in (edited out).  The staff at (edited out) are top-notch and treat you like family!  It made the procedure an even greater experience.  They are knowledgeable about MS and CCSVI and discuss it with you openly if you wish.  Two of the nurses at the center have family with MS/CCSVI as well, so they are very compassionate.  For those of you unsure about the procedure, they do offer consults with the doctors as well.  I had emailed my insurance information ahead of time and they never asked for the card, credit card, nothing….I appreciate that.  After signing about 8 forms (HIPAA, etc), I was prepped with an IV and was in the procedure room in 10.  I should stop here and say that there are only two procedure rooms, so you get individual attention from the staff all the way around.  None of the waiting in line, etc.

Once I got into the procedure room, they immediately prepped me (lasted about 20-30 mins) and then we started.  They use  moderate twilight sedation and you can watch the procedure on monitors if you wish.  I watched from time to time, but the sedation made me want to snooze a bit.  The doctor will talk to you throughout the procedure if you wish, and he asked if I just wanted him to be quit.  He was also training the local doctor that runs the (edited out).  I told him to keep talking by all means so the local doctor can learn the techniques and help out our friends across the state.  (The doctor is also doing research with arterial/venous flow rates and asked if wanted to participate.  The procedure would have taken 30 minutes longer, so I declined because of traveling and schedules).  Honestly, the procedure is about as easy as slipping in ice this past Tuesday.  I felt no needles going into the groin, I felt the occasional maneuvering of the wire (which is akin to  light tickle), and when the ballooning occurred, I felt that.  They warn you before-hand what and where it will be felt.  It isn’t painful, but it is very heavy pressure.  They squirt a little more juice into the IV just before the balloon!

So, what did he find?
-Right Jugular stenosed just below right clavicle (horizontal ballooning)
-Left jugular stenosed in left neck (same level as my cervical lesions…hmmm) (vertical ballooning – this area is still tender right now, similar to a strained or pulled muscle)
-Azygous vein in chest was twisted in knots
-Iliac Vein was stenosed
(THAT’S FOUR STENOSEES…or is it Stenosi ??!!!)

Technical Data
-No stents used
-Went in on left side
-I will send the report when I receive it (twilight makes it hard to interpret all of the acronyms and such)
-The procedure lasted almost two hours
-The Doctor asked to use my pictures in a presentation in California next month

-Overall, I feel much lighter!  Head feels lighter, legs feel lighter!
-Head feels like blood is moving through it again
-Cog Fog has decreased by probably 75%  (I might need sleep as well, 430am was early)
-Significant reduction of spacisity in left side of neck
-I had back pain in mid-back from time to time that may have been MS hug or back problems – well, the ‘hug’ is 75% gone!
-I feel that my lungs and diaphragm are expanded more and I am getting more oxygen
-I have a significant increase in alertness and focus
-My optic neuritis has been almost eradicated (vision wonky just a bit after some ice cream!)
-Balance feels better
-Sinuses on left side feel drained and less stuffy
-Blood pressure dropped by 15-17 points (from my historic average of ~130/87).

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