I hold true to my policy of honesty insofar as this CCSVI treatment, and/or its effects on my RRMS.
Good bad ugly. Let me of course start with the positives here some 8 years hence:
1. My particular flavor of MS would be considered mild by the medical textbooks, at least in 2008 prior to learning of this CCSVI. That being said the actual real world day to day impact on my life was anything but
mild, it was in fact quite and devastating and debilitating. Heat fatigue when wearing a hard hat for a living is its own unique form of torture, let alone when it was off it was bad enough, the endless memory lapses the complete lack and inability to even move from fatigue that was crippling. No I was not actually crippled and only someone with this condition understands what it feels like when there are 100 pound weights attached to all your limbs 24/7. When you have to have someone else constantly remind you that they have to remind you and your significant other has to take care of almost everything because you can't even keep the last hour straight in your head.
OOOKAY point made. Now it is my personal belief that the majority of those particular symptoms were specifically a result of compromised blood flow, regardless of whatever concomitant destruction was being had up in the brain with lesions and scarring etc.
And so when that blood flow was rectified those symptoms went away and they have still not returned after 8 years, and I believe that is owing principally to the fact that these stents have maintained this openness for these years and have prevented restenosis which is a rampant problem with venoplasty.
No of course that is not an advertisement for stents I am only evaluating my own particular situation, take it or leave it.
So I have for all intents I have had eight very very excellent years of so-called remission from this "MS" if that's what you want to call it, yet on the other hand I always always left an opening for this immune system and the vagaries that it may present over and above the aforementioned. I declined the drugs also during this time.
I really stopped even mentioning Ms stopped going to see the neurologist after a few visits because it was becoming pointless, but I was always watchful.
Okay so now on to what may be considered bad news.
About two years ago I was on an extended vacation from work, spending a lot of time reading and surfing the internet on my phone and taking care of the kids school you name it. Life was just level, no ups or downs.
During this time on my phone I started to develop what I thought was carpal tunnel syndrome, which would have made perfect sense considering how much use and abuse my right hand was taking surfing on this phone. Fair enough it was my decision to abuse my working hand, and after roughly a year of trying to stretch it out ice it out exercise it out I gave up and went in and saw an orthopedic specialist, who promptly scheduled me for carpal release surgery, so after that was done the symptoms didn't seem relieved, they said wait 6 months I waited a year.
Went and saw some sports injuries specialist that treat professional athletes and this time there were nerve conduction studies emg's etc., along with MRI's blah blah.
By this time the symptoms were very consistent from day-to-day nothing seemed to alleviate them it is basically numbness on 100% of my hand front and back, a very bad place to be with your dominant hand when you use your hands to make a living. This then led to another neurologist not my regular one and he ordered what I haven't had for quite a while and that's an MRI with and without contrast including the cervical spine.
You are all aware I don't have a stent on my right side anymore so I have no idea whether that flows now compromised in so far as being a contributing factor here, nevertheless the MRIs showed lesions that I did not have previous and they are on my cervical spinal cord, and those unfortunately would perfectly explain this numbness because attributing to this or that nerves is only going to impact certain portions of the hand not the entire hand front and back.
So that is where I am at right now I have a feeling this is numbness is here to stay even though I am absent any and all other previous symptoms I ever had for MS. The hand is still perfectly usable it is just extremely frustrating writing using knives that sort of thing fine motor skills if you will and I'm constantly dropping things out of that hand. Obviously not a gamechanger, but for me specifically it's extremely disheartening because of all the things that use that hand for and now those fine motor skills are very hard.
The hand is not crippled I still have strength in it which also proves that it's not any particular nerve impingement, if after 2 years it's essentially just static it's not getting worse it's not getting better.
Anyways that's all I have if I had the chance to go back to August 2009 and do it all over again I would not change a God blessed thing, and have absolutely no regrets. My slipped stent is in an extremely safe spot is not going to go anywhere, and this is why I have never ever once recommended somebody get stents.
That being said I do fully believe after working with my local doctor here and what he has to say about ccsvi that if we could somehow in the future get dissolvable stents in to just hold those veins patent long enough to retrain the sympathetic and parasympathetic nervous system that they would remain patent after those stents are gone this is why angioplasty does not work, these IRs are treating transient stenosis without any regular pre-post follow-up scans at regular intervals so they could see just how useless a one-time one location treatment is for the majority of patients. All these current studies and the way they're setup are guaranteed to fail.
My local doctor did at least 4 scans prior to and regular scans after treatment so he has documentation these studies do not, one particular shot in time is not enough to diagnose or treat, or declare success or failure.
So anyways I'm not really read up at all about cervical lesions and the part they play what the future might hold or whether these symptoms may abate in the future or if they are a permanent fixture I don't know would appreciate any thoughts on this from other experts thank you. I don't even think steroids would help.
Also I have an appointment in a few weeks with my regular neurologist and I will have the most recent scans and our old scan so we can make comparisons and try to figure out if there are any new lesions or not other than the cervical. Also I feel it is very important to add that no lesion either in the brain or spine enhanced after administration of gadolinium.
Mark Miller, Cureious
Any all positive contributions appreciated. Shooting the wounded messenger not appreciated.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko
, Virtually symptom free since, no relap