Hi all, just wanted to brush up on a few things, nothing major, but important to me I guess. Just finished my third summer in the heat, and am crushed the cold has come on so quickly, as it impinges on the girls swim time in the pool lol.
As mentioned on another thread I think about the Vegas conference, a Dr. I had been seeing recently on an unrelated matter, had shown much interest in CCSVI, as it came up during the course of our visit. He simply cannot get enough info. I think I created a monster, and to boot, he is of Persian descent, and I love Persian people, such a rich and ancient history, intelligent, funny and caring people are all I have ever known when it comes to Persians.
After all the initial "info break-in", and links and Marie's books etc. he took it upon himself to start handing out flyers to all his patients. Not my idea, but if that's what he wants to do... I try very hard to bring up the possible complications and keep those at the fore, to make sure he is highlighting those in equal measure along with possible bennies. He did in fact go to Vegas for the conference, but arrived too early, and was feeling under the weather, and decided to come home instead of waiting until the 5 pm start.
He has had two recent patients, one has MS, the other was dx'd with stroke related dementia. The MS one he is sending to Stanford of all places for an MRV. Hey not my idea either, and I'm relaying second hand info here so don't shoot the messenger, but hopefully they'll get the Dake protocol at least. Little fuzzy on the details on that one so if anything else comes up info wise I'll pass it on.
The other patient though, is intriguing, a fellow Persian, so they talk to each other in Farsi, and here's this young guy who was dx'd by the neuro with a stroke, and is now *apparently* suffering from dementia. At least that's how the neuro basically wrote him off. Now he comes in to see Dr. O, all fresh out of CCSVI school so to speak, and Dr. O is talking to him, and realizes this kid (I think he's 30 something), is hardly suffering from dementia at all, (well perhaps I should say, "is not solely suffering from dementia) because during the course of conversation, Dr. O was noting that contrary to dementia, the patient was thoroughly conversing in the here and now. However, said patient intimated something that I myself am intimately familiar with, and perhaps some of my fellow cog-foggers can relate, insofar as you have all this "stuff", (thoughts, ideas, things to say etc.) bouncing around in your head, but for some reason, you are incapable of communicating those things, it's like the train is on the track, but is chugging around in circles instead of arriving at the destination. I know exactly what that feels like, a mental block, but not in the way we think of memory-wise, but rather "all the good stuffs right here, I just am incapable of showing it to you verbally". Like I said, you cog foggers know what I mean, everyone else, this will seem a little out there.
So there he is, the patient, saying "look, I'm still here, and there's just no way I can explain it to you, the thoughts are stuck in my head". Patient is suicidal too. Hey, lot of us have been there, it sucks when you are stuck inside your head and cannot get out. When all the neuro can do is monitor you, make a note on the chart and send you home, no better, no worse.
Dr. O is thinking this may possibly be a missed MS dx, am again, I'm relaying second hand info here, and am not sure about how concrete all the stroke stuff is, or if it was inferred that he had one based on current symptoms, just don't know.
But, at that particular time of day, Dr. O just happened to have his ultrasound guy on hand, and did a UT on his IJV's. Both were blocked with inferior flow. Dr. O sent the UT to a fellow radiologist to take a look, and he too had a couple of raised eyebrows, saying he had, "never seen anything like this before", and I'm guessing that's in regards to the IJV's being blocked/slow flow alongside the presentation of the patient.
Now think about it, here you are, a patient, you've done all you can, followed the program like a good little patient, gone to your neuro, who I'm sure did an MRI, and possibly found something and inferred stroke or whatever, but then you aren't recovering or improving, life is a downhill slide and you are literally "losing your mind". Would you want someone to come along and say, "hey, no promises here, but there is one thing we can look at if you are interested". That's a no-brainer.
Anyways, as of this week, the patient is heading to our good friends the Hubbards, and I hope can find some answers there. Perhaps his problem was CCSVI all along, perhaps not, but I guarantee you this, without any more inside knowledge, there's a glimmer of hope out there for this suicidal gentleman, he is a victim of his own body so to speak, and the suicidal tendencies are merely a symptom of a larger physiological problem, and if that can be "fixed" or ameliorated, why all that suicide crap goes right out the door, healthy veins, healthy minds, right?
Promise to update if/when I get more info, Dr. O is very interested in touring the Hubbard's facility, and while he himself is not interested in procedures anymore, having done plenty himself in various sub-specialties including neck veins, he is by far one of the most charismatic, indominitable and positive people I've ever met. He really does want the very best for his patients and is not gunshy to do whatever it takes to achieve just that for them, even if there is no profit to be made on his end. Plus he has a very extensive network to boot, and sent CCSVI back to Iran with a visiting Dr. I'm proud to know him...
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