This Is MS Multiple Sclerosis Community: Knowledge & Support

I just read the posts from Tuesday on. Sorry Dr. S. - I'm bummed (pronounced pissed). I was 2 weeks away from treatment when you were shut down. I already paid over $1000 for the hotel. It wasn't an issue that it was non-refundable. It was inexpensive and very close to the hospital. After all, I had a "CONFIRMED APPOINTMENT" - fat lot of good that was worth !!! Since the hospital gave you the go ahead then pulled the rug out from under you, they are the ones who are responsible. I'm going to contact them on Monday and demand that I be compensated. Not a problem if they balk, I'll just hire a extremely competent attorney and sue them. When they lose, and they will lose, they will have to pay court fees and attorney costs. I think I'll add $100K for mental anguish also. Just think, they could have made over $100K per week for the last 2 months or so and now they will have to pay. The lesson to be learned is 'actions have consequences' (especially ignorant ones).
And people wonder why our economy is in the tank. It's stupid decisions like these that make us take our money and spend it in other parts of the world. I already setup going to Poland shortly after Dr. S. was shut down. I need treatment now, not when some bureaucrat decides it's OK (read he/she wont be sued). In the long run, it's much less expensive.

OK, another amateur watches House, MD. But...

They (fake doctors on TV show) were watching a real-time display showing oxygen going to different parts of the brain using a nice high-tech PET scanner.

Can't the same thing be done to diagnose low flow? (I could blame my bad marks in high school on it, but the display would only show I was smoking too much pot.) Isn't hypoxia more obvious that way? I had PET for my cardiac stress-test after my heart attack, so I know they have one near here.

_________________
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

[quote="larmo"]I just read the posts from Tuesday on. Sorry Dr. S. - I'm bummed (pronounced pissed). I was 2 weeks away from treatment when you were shut down. I already paid over $1000 for the hotel. It wasn't an issue that it was non-refundable. It was inexpensive and very close to the hospital. After all, I had a "CONFIRMED APPOINTMENT" - fat lot of good that was worth !!! Since the hospital gave you the go ahead then pulled the rug out from under you, they are the ones who are responsible. I'm going to contact them on Monday and demand that I be compensated. Not a problem if they balk, I'll just hire a extremely competent attorney and sue them. When they lose, and they will lose, they will have to pay court fees and attorney costs. I think I'll add $100K for mental anguish also. Just think, they could have made over $100K per week for the last 2 months or so and now they will have to pay. The lesson to be learned is 'actions have consequences' (especially ignorant ones).
And people wonder why our economy is in the tank. It's stupid decisions like these that make us take our money and spend it in other parts of the world. I already setup going to Poland shortly after Dr. S. was shut down. I need treatment now, not when some bureaucrat decides it's OK (read he/she wont be sued). In the long run, it's much less expensive.[/quote

Well put, Larmo. If we take it lying down these morons will not even know which way the wind is really blowing. I am sure the dissatisfaction among people is going to consume corrupt and incompetent people like these ...

sbr487,

I truly hope you are not serious about a lawsuit against the hospital where Dr. Sclafani STILL works. We only have words to go by on this site, so I am responding to what you have written. You are angry, as we all are, and understandably so.
But I do not think a lawsuit is going to 'show' anyone anything. Have you considered that this could jeopardize the good doctor's position at the hospital, in many ways, one of which is in terms of his efforts to help us, which includes IRB approval which does not seem like a done deal, because I think the doctor plans to re-apply. This is not over, the battle to get the approval (correct me if I am wrong9.

A lawsuit coming from an angry potential patient could easily be used to justify exactly why they would not let him go forward with a trial.

I am truly sorry you lost your money, I know I would be very upset. And I understand needing treatment immediately as so many do. I do hope you make it to Poland, and I would ask you to reconsider your choice, again, if you are seriously moving ahead to file a lawsuit.
Maybe you could contact Dr Sclafani and see if there isn't some way for him to help you with the money you lost, in terms of the hotel? Maybe he could contact them?

Zina

Hi, Dr. S.

It seems that many of us have issues with the valves in our veins, but I haven't seen any descriptions of how many valves there are or where they are located. Could you give us a quick overview?

Also, are the doctors finding any correlation between where the problem (stenosis/valve/flap) is and the patient's symptoms?

Thanks for another one of your grateful groupies!

OK, while I agree with this. My bf was 2 patients away from liberation with Dr. S. and we have too lost alot of money with the hotel we had already booked. We were called 2 days before procedure time and told the IRB had to be in place. We called the hotel and were able to cancel one day, the other days we lost the money. Not really my concern. Here is the real concern of ours:

We paid the total amount for the proc. and testing along with preop etc. in cash to the hospital. We with the help of Holly got our entire amount of money back. But, now we are recieving bills for the MRV and doppler tests from the hospital. We have wrote letters to the hospital explaining we will not pay until the ENTIRE proc. is done! It was a package deal.
But, I have to add that a lawsuit at this time would not be a good idea. However, you have to do what you think is right for you.
Good luck and I hope it does not damage Dr. Sclafanis doings at the hosp. any further.
We will just continue to refuse to pay for the testing until the hospital allows Dr. S to do liberations. I dont know how far that will get us, but we shall see.

Hindsight is 20/20 of course, but nothing should be lined up as non-refundable or prepaid, i.e. hotel, with this procedure. Too many ifs, ands, buts. True, you can often get the cheapest hotel rate if you go non-refundable, but it is not worth the risk. Same with air fare. Pay the little extra on airfare to get the travel insurance too.
Please, no suing.
Well that's my two cents.

error
idiot
to anyone who saw, be kind to me

Hahahaha...........Dr. S is streaking through the forum!!!!! I saw you!

Dear Doctor;

Beside the 'left entry' of the iliac stuff; there is also that CTOS story that could play some ball in the game.

What are your thoughts about the whole picture?

Thank you for your time

Laura[/quote]
nope, sorry
collecting data on a group of patients and writing and publishing it all is doing research on patients and it requires IRB.
But the idea of writing it down, finding out whether adding it all up is the goal of the academic life[/quote]

Please forgive me if I'm being dense here. I just want to clarify a few things in my mind.....I know that you want to perform CCSVI procedures for MS patients and that is your goal. That being said, is there any way around this? Does this mean that we cannot have you treat our CCSVI as a separate condition without any mention of MS? Does that mean that there isn't any way the IRB would let you do venous angioplasty for CCSVI at all?

to anyone who saw
pm me what I missed!!

_________________
"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

Me too, feel like I missed a joke or something...

Me three please!

F*&k ! I say gor for it. Stupid hospital. They think they own human lives. They do wrong and you can't fight back because you are scared someday you might need help from them or........whatever. Go for it Larmo and others who want your money back.