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Rieja wrote:FYI, when I left a message, the auto attendant said to leave name, number and do not call back. They would contact you within 72 hours. <shrug>
That's probably their normal wait time. I'd cut them slack, I can only imagine they are slammed with the high demand for this.
I agree with Cece. My darling man called, initially, on the 18th. We talked on Monday the 24th (we're long distance right now), and he said he was going to wait before he called again. Me, being VERY impatient, said that maybe he should call again. So, he did, and got the answering machine message that his call would be returned in 72 hours.
I'm sure that they're doing everything they can to get back to people. Let's remember.....CCSVI and MS isn't the only thing they deal with. (that's a note to myself to be patient).
Oh I know. I was just quoting what the auto attendant said. I know full well the actual wait time
I would just hate to get a call back before others. If someone slips through the cracks because of a clerical error, I would like to let them know. ie if BooBear was never called but I was.
Rieja wrote:Oh I know. I was just quoting what the auto attendant said. I know full well the actual wait time
I would just hate to get a call back before others. If someone slips through the cracks because of a clerical error, I would like to let them know. ie if BooBear was never called but I was.
Oh, Riega, I hope I didn't make you feel bad. I'm sorry if I said something that made you feel that way.
Thought the following from Dr. Siskin might help calm everyone's nerves. He did not get to where he is at by being disorganized. He clearly understands our anxiety and everyone at his clinic is working hard for us. Have faith.
Dr. Siskin wrote:I have to tell you that we are very compulsive about keeping a list in the order in which people contacted our office. We do not base our list on when someone from our office contacts the patient...we keep it based on when you made first contact with us.
...
...sometimes when we give someone a date, they may later call us back to cancel or to reschedule on a later date. When that happens, we take the next person on the list and offer them that date. It would be impossible for us to move everyone up a date to keep things in order so we just call the next person on the list.
...
The bottom line is that we are making a tremendous effort to make sure that our resources are allocated very fairly. ...
I know they are swamped. I received a call back today after leaving a message Monday. They wanted Insurance and other basic info. Was told a Dr. would be calling within the next 5 days to discuss specifics. I am just happy someone is bold enough to be offering the procedure here. Most likely be Fall before I am seen but at least something positive to look forward to.
JCB wrote:Most likely be Fall before I am seen but at least something positive to look forward to.
As someone who has had a date, then lost it when the IRB process delayed things, it was much more fun having a date scheduled than it is now!!
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
I asked Dr. Siskin about follow up tests that he recommends and if they can be done locally.
He stated the following: "Yes, these tests can be done locally. We would recommend an ultrasound examination every 3 months for a year and then every 6 months. The purpose is just to make sure that flow is OK in the vein and that there are no dramatic changes from exam to exam. I actually think that the better way to assess this is with your symptoms. If you see a benefit from the angioplasty, then that would be your new baseline. If your symptoms worsen at some point in the future, it would make sense at that point to take another look to see if the vein has re-stenosed."
As I mentioned earlier, I had sent out 121 letters to Dr's in MN and 3 got back to me. I have been in contact with the one well respected institution. The Dr. there stated the following: "I think that we would be more than happy to to complete your follow up exams but please make sure that Dr. Siskin feels comfortable. Feel free to pass on my email to him." (Dr. Siskin is fine with this)
So this is good news, I can not post the institutions name yet as they are still defining their testing protocol CCSVI. But if you have been liberated and are from the midwest, PM me and I'll try to help you out.
It's all about "Teamwork". Thanks to everyone that has helped me and my family out.
Does anyone know if they have the IRB approval for their study yet? I'm really hopeful that if just one IRB can lead the way and establish essentially a de facto blueprint for how these studies can work, then the rest of the IRBs that are holding up the show will fall like dominoes.
bmk1234 wrote:It's all about "Teamwork". Thanks to everyone that has helped me and my family out.
This is fantastic...thanks for your work on this...that is quite a schedule of follow-ups too! After a year, do the six month check-ups go on indefinitely? I suppose it's not known yet if the one-time fix might revert even after such a long period of time.
So these are the first real signs of institutional interest in CCSVI here in MN! This makes me very happy. And the thought of follow-up for myself as well as others is happy-making too.
Trish317 wrote:
Rieja wrote:Oh I know. I was just quoting what the auto attendant said. I know full well the actual wait time
I would just hate to get a call back before others. If someone slips through the cracks because of a clerical error, I would like to let them know. ie if BooBear was never called but I was.
Oh, Riega, I hope I didn't make you feel bad. I'm sorry if I said something that made you feel that way.
I'm sorry as well. Hopefully everyone will get their call-backs soon. I wonder how long it will take to fill out Dr. Siskin's calendar completely? Remember when Simka got booked out to the end of 2011? That went fast.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
Rokkit wrote:Does anyone know if they have the IRB approval for their study yet? I'm really hopeful that if just one IRB can lead the way and establish essentially a de facto blueprint for how these studies can work, then the rest of the IRBs that are holding up the show will fall like dominoes.
You know Rokkit I think you are exactly correct. The feeling I get is that they all have been getting more information on CCSVI. Now it's to where several places are comfortable enough with the logic and relatively easy and safe procedure that they are going for IRB clearance. It's similar to your high school dance now. No one wants to be the first one out on the dance floor, but as soon as one starts more will soon follow.
I live in the Greater Milwakee area. I had a MRV 3 weeks ago that Radiologist 1 interpreted as showing an occluded left internal jugular. Rad. 2, said, on the 11th, that he felt the carotid artery was compressing the L.I.J.V from time to time and there was no permanent occlusion. He did the venogram on the 14th, confi...rmed his belief, and sent me home. I want to locate a really good Interventional Neuroradiologist, who isn't anti-CCSVI, for an additional opinion. I have a CD with all the scans on it. Not looking for a freebie. Can you recommend anyone?
