coach wrote:So it appears that there are those patients that were treated by Dr. Dake are seeing him for a two year follow up. Any Insurance problems? Even though Dr. Dake gave me the name of a doctor closer to where we live, my husband thinks the smart thing to do is to go back and see Dr. Dake.
Sounds good to me. If it's not broke, don't fix it. I continue to have struggles and am not as good as I was immediately after the procedure in 2009. Didn't have stenosis in high jugulars, but low jugs and azygous. How far in advance does one need to schedule with him since I know he is a very busy man?
esta wrote:cece, i haven't a clue what tool they use, and i would never have thought to even ask.
gawd i feel so mindless, yet, the pacific clinic intuitively so far works for me...yes, if i didn't have ppms and was younger, i'd wait - no long though- better half done than not.
i read everything you write, so rock on...
I was intrigued that he zeroed in on the valve specifically, and now I can't recall the comment he made specifically about me but I believe that I had 3 or 4 valves.
What a day though. Had this nagging thought in the back of my head to put one of Marie's books in my carry on and a copy of my video.
Cece wrote:esta wrote:...If you read everything I write, I must keep you busy.
Went to see a new doc on totally unrelated matter, and during the course of our initial meet-and-greet visit, my med history was queried, and oh boy is this Doctor INTERESTED or what in the CCSVI stuff. As mentioned in another thread, I brought him a copy of Marie's book, and her latest note as a nice adjunct to that, and the link to the Dr's thread on here. I've never seen anyone take off so fast, it's ME who's slowing HIM down lol. There was a colleague from Iran who happened to be visiting, and thru my Doc, CCSVI is going back there too. By the time we got to the next appointment, he showed me a flyer he hands to ALL of his patients, not just the MS patients, but in case they even know someone with MS, he hands it to everyone. Real go-getter I guess. He also found the Vegas symposium deal and is attending that. For a 60+ year old doctor, he sure has a lot of get up and go.
CureIous wrote: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.
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