My surgery is 25 days off now. This report is from my friend who had his surgery last week. It's long but very detailed and very encouraging. I can't wait for my turn.....soon...very soon. PART ONE:
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 ??!!!)
-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 alert
ness 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).PART TWO: UPDATE
I wanted to send an update and capture much of what I have been experiencing over the past 48+ hours. Yesterday morning, I awoke fresh and ready to face the world. I generally stay sleepy for about
the first hour and have to drag my behind out of bed just to get to work – never feeling like I have slept long enough to replenish my energy reserves (even though I generally get at least 8 hours of sleep each night). Once I get going and out the door in the morning, I generally do not get fatigued during the day, however, I do feel more and less energy come and go throughout the day. Yesterday and today have been completely different as I have had a steady stream of energy throughout the day and into the evening. (Case in point - last week I would have procrastinated to send out an email such as this so I could save my energy to spend with time with my daughter)
I can also report that my feet have been warm from all of the extra blood flow – in fact, I texted my wife yesterday while I was in MBA class and told her that I needed to take of my shoes and socks because my feet were getting sweaty! (It is hard to believe that the some folks (neuros) feel that this is a placebo effect as I can literally feel the warmth of the blood that is flowing through my body) My feet are also less sensitive to touch (less ticklish), and I found that I did not need to put on my flip-flops or slippers this morning when I got out of bed-like I usually do (because the feet are so sensitive). Also, I have enjoyed the ability to stand up without dizziness or pressure in the head, and having to grab onto something to help myself up (thanks to improved balance and reduction in lower back pain.)
My mental clarity and focus is still improving and my head has also been warm with the new blood flow. Friday afternoon and yesterday I found that I had no clue how to direct my thoughts and how to ‘use’ this newly improved brain. It is in the act of repairing itself, so I just let it go and enjoyed the ride (with a stupid grin on my face)! I no longer feel that I am asserting as much effort to think, process, find words, and remember mundane but important facts (i.e., what was the actor’s name in the movie that we watched last night?). Also, I feel that I no longer grumble about
the little things that I used to and that my mental outlook has been changed for the better – my wife appreciates that!
I have been taking it easy and do feel that the body is getting used to working normally again. I never mentally went into the procedure thinking that I was going to have great results, and honestly, the minimum that I have asked for is for a halt, reduction or pause of progression. Is this procedure a cure? No! Is my MS gone? No! Will it take a long time to repair the damage? Yes – because it took a long time to create the damage! Will these results last? Maybe, Maybe not! Like always, I am just taking it one day at a time and I know that this is a piece of the MS puzzle. As I mentioned before, if these results go away tomorrow, I will go back and do it again, and again until it lasts (or I feel that stents are the way to go). I have tasted what it feels like to be almost normal again, and it is much better than sitting around feeling like I am not in control of my body.
Some of my friends have asked about
the follow-up and treatment plan. The staff will follow up with a call this coming week to check on me, the doctor will send my report in the next week (by email which I may send questions back), the doctor is always available by email if I have any questions (he has already proven this before the treatment), the staff is always available by phone and email and very prompt (and they are very knowledgeable about
CCSVI including (edited out) who is the attending doctor in (edited out), and I may elect to go back for a consult or (follow-up procedure if he feels it is necessary) with the doctor when he is in town next (which is about
once a month for a few days at a time). He did not put me on any drugs. I did ask about
this specifically, and he said that there is evaluation on a case-by-case scenario depending on the severity of the stenosis/blockages and the patients history. I personally feel that he takes a conservative approach to this type of treatment as blood thinners and the such need to be monitored and adjusted in periodic intervals. He did indicate that aspirin may be taken if the individual chooses to do so (I took it before the procedure due to family history of heart-related disease, so I am continuing to do so).
I promise to be honest and upfront with you about
my experience – I will not sugar coat. I do feel that ‘repair’ has been coming and going in waves – like a computer trying to reboot, then it is turned off for a few hours, then starts back up again. I certainly hope that it will stay on forever, but I am just comforted to know that I have had some relief, even if minor. Even it all goes away, I will be happy because I know that I can get the good life back again with a safe, simple (and oft performed) two hour visit (btw – the drive is longer and more painful than the procedure). Advances in CCSVI treatment will, in my opinion, be the second line of defense in treating MS. (The first will be steroids to reduce inflammation, followed by soon after by angioplasty).
*If you don’t like rants about
neurologists, stop reading here*
I am not kissing my neurologist goodbye – but I will continue to have a few choice words to say to her the next time I see her! If I walk away, then how we she know the benefits that I received from my procedure? As a matter of fact, I told her that I would share this information and reports with her. I have been known to debate the fine points of her ineffective approach to therapy and drugs (she does receive royalties for making grandiose speeches about
medications that a) even the pharmacist do not know what the method of action is; and b. work in only like 13% of people) and I have been a little up front with her in past (I will say she takes it in good stride!). I feel that these neurologists (at least the three I have seen) get used to having their power over the weak and the desperate and they understand that they have very little offer.
It is time to challenge the position of their comfy little perch which they have come to enjoy for many decades. MS patients need to ask about
CCSVI, new therapies, and challenge the antiquated thought that they have built their practice on. Unlike popular belief that they have no future in a CCSVI world, there is a role for them in MS in the future – whether it be diagnosing the disease (and recommending an angioplasty doctor) or working on the remylination effort - they simply need to be challenged! There is a call to action that must not be ignored.
PS – I wrote this without my glasses on!