I am back from [some undisclosed location] and being treated by [the doctor who shall not be named] for CCSVI. This post may have more detail than you care for. If so, please feel free to skip to the part you're interested in as I have tried to group the information into relevant sections. Thanks for all of your prayers. First, a word to my Sponsor:
In that day you will say:
"I will praise you, O LORD.
Although you were angry with me,
your anger has turned away
and you have comforted me.
Surely God is my salvation;
I will trust and not be afraid.
The LORD, the LORD, is my strength and my song;
he has become my salvation."
With joy you will draw water
from the wells of salvation.
In that day you will say:
"Give thanks to the LORD, call on his name;
make known among the nations what he has done,
and proclaim that his name is exalted.
Sing to the LORD, for he has done glorious things;
let this be known to all the world.
Shout aloud and sing for joy, people of Zion,
for great is the Holy One of Israel among you." - Isaiah 12 (NASB)
THE SHORT VERSION: For those that just want the short story: They found and fixed stenosis in my veins as Dr. Zamboni's theory had predicted. I have felt immediate relief in some symptoms and I am hopeful that others will resolve with time.
TREATMENT LOCATION: [Deleted to soothe frayed nerves. pm me if you would like info on this]
[nameless doctor]: [nameless] is obviously quite the pragmatist. He was highly recommended by every other IR I talked to. He doesn't seem to be as interested in all the academic minutiae as he is in helping patients. When I asked about their waiting list he said that they now have 700-800 MS patients waiting to be treated. Between all the doctors at the clinic they are trying to treat between 90-100 patients a month [It has come to my attention that the good doctor does not recall saying this. Obviously I could have made the distinction between "patients" and "MS patients" clearer]. The good Dr. is caught in a tidal wave of demand from a desperate population of patients wanting to be treated and with a range of expectations and outcomes. He characterized outcomes as a third of patients having amazing improvement, a third have moderate improvement and a third having no improvement. Probably the most difficult thing for him is dealing with sometimes unrealistic expectations and subsequent disappointment of some patients. After he said this I told him about the magician we saw the night before and told him I was expecting him to make my MS disappear!
LIBERATION PROCEDURE: I was given a quality of life questionnaire. In preparation for a formal IRB approved study, they are trying to get a feel for changes in quality of life measures after the procedure. I was told that I would receive a second questionnaire by email a month or so from now (online via survey-monkey). After the survey was completed the nurse inserted a 22 gauge IV into the back of my right hand to deliver IV fluids and the conscious sedation (twilight sleep) medication that they use during the procedure. Lani (my wife) was given a pager so they could notify her when I was done and actually was able to go back to the hotel and get some studying done.
I was wheeled into the OR and they transferred me to the table. The technician attached some EKG sensors to my neck and chest and then proceeded to shave my left groin area. They must have begun administering the sedatives at this point because things got a little fuzzy. I remember the technician apologizing for having to shave me and saying she would try not to shave too much. Let me just stop right here and say, if you are planning on having this procedure this would be the point you should yell, "SHAVE, BABY, SHAVE!!" Little did I know that her conservative shaving technique would result in the most painful part of the procedure as removing the bandage the next morning turned into an amateur wax job!
From this point on I remember very little. The doctor would at times tell me to breathe or to hold my breath and I complied. I do remember him asking for a balloon a couple of times which was great to hear since it meant he had found something. At one point I remember feeling some pain from a balloon that intensified when I took a breath and this made me breath deeper because I wanted to help it out if I could. All in all the procedure lasted 2 hours although the sedation made it seem like only 15 minutes.
WHAT THEY FOUND: [nameless doctor] came after the procedure and filled me in on what he found. He said he treated mild stenosis in both jugulars at the junction with the subclavian vein (this is the vein right under your clavicle or collar bone). He said he found and treated significant stenosis in my azygos vein (a vein just behind your heart that drains blood from the spine). After I thought about it, this made a lot of sense to me given my symptoms. I have never had "brain fog" or constant fatigue and it seems that those MS patients with very bad stenosis in their jugulars have complained of these symptoms the most. Also, my largest lesions are located in my spinal cord. My worst symptoms are with my legs and balance. Here are some of the images from the procedure (the extensive dental work proves that it wasn't a stunt double!):
There were three other balloonings of my azygos. They basically balloon the heck out of it. It is actually still a little sore as I write this.
This was fairly high up and Dr. NoName was not sure it was significant, but he ballooned it anyway.
RESULTS (SO FAR!): Some symptoms have responded immediately. Others will probably take time.
1) Bladder Urgency: Okay, the first thing I noticed was the tiny voice in my head. This was a voice I used to hear a lot that whispered, "Dude, your bladder is starting to get full. You should consider hitting the john in the next hour or so..." I have really missed that voice! For the last few years there has been only silence until a Klaxon alarm goes off in my head accompanied by a voice screaming, "YOUR BLADDER WILL EMPTY IN 10, 9, 8 ...!!!" You get the picture. Because of this I had trained myself to just go whenever I had the opportunity and not wait. I think that this is almost back to normal and it seems like it was immediate.
2) Urination Hesitation: Most people with MS have difficulty getting their body to respond when they trying to start and stop urination. This was the case for me. It appears that the procedure has also fixed this symptom.
3) Balance: While my balance is not back to normal it has definitely improved. We took some pre and post video which can be viewed here: http://www.youtube.com/watch?v=6EqV6w0tSQc
4) Vertigo: For a week preceding the treatment I had begun to experience some significant vertigo. This seems to have relieved.
5) Spasticity: This is the word that is used to describe the tendency of an MS patient's limbs to respond imprecisely to intended movements (think Raggedy Andy). Legs definitely feel less spastic, but certainly not back to normal.
After walking out of the hospital I could definitely tell that my affected limbs felt significantly different. The heaviness that I had felt in my legs and arms was gone and replaced by a stiffness. This stiffness was quite noticeable the morning after. In addition, my left hand and forearm ached considerably from about noon the day after to the time I went to bed. My left hand has been numb longer than any of my other limbs (since 2005), could this be related? The stiffness has since relieved and my feet feel a little less numb, but it could just be positive thinking. Time will tell. I will post to the tracking thread in the next few days.
A big thank you to ALL on this forum with a few possible exceptions (you know who you are
) . Especially Rokkit, without whom I would not have known about Albany. Thanks to Cheerleader for her dogged determination and for not walking away after her husband was liberated. For all who are waiting, CCSVI is real.