LadyGazelle wrote:Lady Gazelle in red:
***Please save all of us time*** (and yourself) and tell us EXACTLY what the testing prescription MUST include.
Cece:
I don't think he wants to be in a position where people are going back to their doctors and IRs and saying, "Dr. Sclafani on the internet says...."
Besides possible offense to your doctor, I worry that he'll put himself at risk of legal liability here somehow.
He may well be able to answer this request for what the correct testing prescription must include. But I think this could be found also within Dr. Zamboni's research? He must have spelled out how he did the transcranial doppler? I can find a link if it would help.
BELOW IS SOMETHING I had found earlier from Dr. Sclafani:
Regarding the "pre-liberation" tests: There are pros and cons for each kind.
The doppler is non-invasive and cheap, but it MUST be done by someone who is properly trained. What it will show is where blood flow goes (or doesn't go). It's not great for pinpointing the location of blockages in the jugulars, and it can't look at the azygos vein at all.
The MRV looks for blockages in both the jugulars and the azygos, but won't find the telltale reflux or backflow of blood. That's an important distinction since some people don't have blockages -- but they do have problems with a valve in a vein or with a flap within a vein that causes reflux. And since it exposes the patient to radiation, some doctors say that there's no point in doing an MRV - just go to the venagram.
So, which ever way you go, be sure to deal with a doctor who understands the full significance of each test and what it will -- or can't -- show.
Another subtle but important point that's just come out this month is which side to insert the catheter to do the venagram. Most IRs choose the side that gives the straightest path. Zamboni says to use the other side since it is more likely to find problems -- precisely because it isn't a straight path. Remember, they're looking for kinks in veins, blockages and the more convoluted the path, the more likely they are to find a problem that would otherwise be missed.
If your doctor uses the wrong technique (which is still rapidly evolving), you'll just get a bill and no results!
Another example of why a doctor needs to be up-to-date about CCSVI is that the catheter may hold open a valve that is normally stuck shut, and then the problem gets missed. Or it may miss a flap that divides the vein (because it was threaded through one side of the flap).
For me, that would be completely devastating. For others, you may need treatment more than I do and it's worth the risk to get treated ASAP.
Since those of us who are rabid (and desperate) may actually know more about the finer points of CCSVI than our primary care physicians, having this kind of information is critical. Yes, angioplasties and stents have been around for decades and are considered quite safe. Just be sure you deal with a doctor who will do the necessary research so you get the best possible results.
So, Cece, I guess "I'm rabid and desperate" and missed that answer.
I need to be sure to get a
Transcranial Color Doppler first, "And since it" (MRV) ''exposes the patient to radiation, some doctors say that there's no point in doing an MRV - just go to the venagram."
Well, that would be ok for me if I knew beforehand that a TCD was absolutely necessary and insist on it when the technician told me it wasn't necessary. I just talked with the IR who said he wants me to go to Albany or someplace where they know what they're doing.
Can you understand my frustration? I called to get "rescheduled" for a Transcranial Color Doppler because the technician didn't follow the Rx from my PCP who is out of town all week.
That way, I will have the test done and send the CD to someone close to Rochester, New York requesting to be liberated!
I hope this post clarifies what others need to request from their doctors.
LadyGazelle
At least for current situation after nearly 2 months: need to frankly say on long-term until now no improvements in hand/feet symptoms, but definitely seems that got a more long-term improvement on fatigue! Had no brain-fog spells and feel generally more awake/no fall-back periods with cloudy brain over the last 2-3 weeks! And had slow-flow in my jugulars due to valve problem...
