Page 26 of 58
Posted: Tue Jul 06, 2010 8:44 pm
by aliyalex
his post disappeared. hello? let's talk. there is too much misinformation being disseminated. let's clear it up.
Posted: Tue Jul 06, 2010 8:50 pm
by Trish317
aliyalex wrote:his post disappeared. hello? let's talk. there is too much misinformation being disseminated. let's clear it up.
He must have completely deleted his profile because, as far as I know, it's not possible to completely delete a post. All you can do is edit it. I did a search for him and didn't find anything. Oh well, he was wrong about some things.
Posted: Wed Jul 07, 2010 1:01 am
by Leonard
Trish317 wrote:Firas wrote:Hello,
The CCSVI procedure is not FDA approved and thus it can not be performed in the USA or Canada yet. All these doctors in the US are doing this procedures under the table, and once they get caught they shut down their operations. Majority of these doctors (or Hospitals) don't follow the guidelines and protocols set by Dr. Zamboni to save time and money, and patients end up getting the worst treatment for their MS. The patients thus get stuck with serious complications and they can not even contact the doctor if his/her clinic is shut down.
The Liberation treatment should be done under the guidelines set and applied carefully. Follow-ups are essential and thus doing it (where and when) is serious considerable option.
Even for patients who is traveling outside, make sure the hosting hospital is JCI approved (Gold-Standard Hospitals). As I researched some Medical tourism companies are doing such packages for liberation, but always stay on the safe side and ask questions.
I don't know where you are from but everything you said in your first paragraph is incorrect.
Are you sure that the FDA has competence in this field i.e. to approve or disapprove the ccsvi procedure? Has onyone checked?
In Europe, the European Medicine Association
http://www.ema.europa.eu/ is dealing with the safety of drugs and has no competence in these sort of mechanically inclined surgical procedures.
http://www.europarl.europa.eu/sides/get ... anguage=EN
http://www.europarl.europa.eu/sides/get ... anguage=EN
Posted: Wed Jul 07, 2010 4:09 am
by BooBear
To everyone waiting, please hang in there. I was as impatient as you could be, too- and when I received my initial call from Dr. Englander in June, I was told that I would get a call by the end of the summer for a fall appointment.
A couple of weeks later, I got a call offering an appointment on August 13. That is Friday the 13th, so I don't know if there were cancellations because some people can be superstitious (I am not)- regardless, as soon as people cancelled or something opened up, they called right away.
Trish, you weren't that far below me on the list; hang tight! I will continue to pray for you! For all of us!
Booked hotel and air yesterday. It all seems real now.
Posted: Wed Jul 07, 2010 5:35 am
by Rieja
BooBear wrote:To everyone waiting, please hang in there. I was as impatient as you could be, too- and when I received my initial call from Dr. Englander in June, I was told that I would get a call by the end of the summer for a fall appointment.
A couple of weeks later, I got a call offering an appointment on August 13. That is Friday the 13th, so I don't know if there were cancellations because some people can be superstitious (I am not)- regardless, as soon as people cancelled or something opened up, they called right away.
Trish, you weren't that far below me on the list; hang tight! I will continue to pray for you! For all of us!
Booked hotel and air yesterday. It all seems real now.
YAY!
It's the 5 week marker for me today (from the initial call back). Here's hoping for a call soon!
Posted: Wed Jul 07, 2010 9:06 am
by lovebug
I first e-mailed Dr.Siskin on June 5. I spoke to a lady from the clinic on June 8 and gave her my `demographics`. I am still waiting for a doctor to call back. Everytime the phone rings I pray that it is the doctor calling from this clinic. Does anybody know what the wait time is these days from the initial contact to when you get an actual date for venogram/angioplasty? Trying to be patient!
Posted: Wed Jul 07, 2010 9:25 am
by BooBear
Lovebug, it was a few weeks for me from the time I gave my demographics to the time I spoke to Dr. Englander. Hang in there!
On a related note, does anyone know if Dr. Siskin and his crew are saving any of the data from all these procedures? Would be a great thing to publish. If no one knows, I will ask.
Posted: Wed Jul 07, 2010 9:28 am
by FlashHack
Well, he must have something to talk about since he will be speaking at Dr. Sclafani's symposium on July 26th!
Posted: Wed Jul 07, 2010 10:10 am
by pklittle
FlashHack wrote:Well, he must have something to talk about since he will be speaking at Dr. Sclafani's symposium on July 26th!
I hope this is recorded so we can see it.
Posted: Wed Jul 07, 2010 11:01 am
by thornyrose76
But what is the exact time for everything? I called yesterday and left my name and number, so what happens next?
Posted: Wed Jul 07, 2010 7:02 pm
by NotFound
Sorry, wrong topic (how did THAT happen?)
Posted: Wed Jul 07, 2010 7:21 pm
by Trish317
BooBear wrote:To everyone waiting, please hang in there. I was as impatient as you could be, too- and when I received my initial call from Dr. Englander in June, I was told that I would get a call by the end of the summer for a fall appointment.
A couple of weeks later, I got a call offering an appointment on August 13. That is Friday the 13th, so I don't know if there were cancellations because some people can be superstitious (I am not)- regardless, as soon as people cancelled or something opened up, they called right away.
Trish, you weren't that far below me on the list; hang tight! I will continue to pray for you! For all of us!
Booked hotel and air yesterday. It all seems real now.
Thank you, BB. My darling man got the email that others got the other day and when he read the part about four months, he interpreted it to mean that it would be at least four months before he could get in. He said he felt disheartened. I said I think it meant that they aren't booking appointments more than four months out, not that he wouldn't get in for at least four months. I'll be happy if it's September or October.
His first call was May 18th but he never heard back so he called again on May 24th. Then he got the first call back on the 26th. He still hasn't received a call from one of the doctors. I'm sure he will some time soon. I think he'll feel more positive when he actually talks to one of the doctors.
In the meantime, I'm doing local research for him. Well, local to him in the Midwest.
Posted: Thu Jul 08, 2010 11:05 am
by mangio
Could you please clarify if you work for a medical tourism company?
Posted: Thu Jul 08, 2010 3:08 pm
by Trish317
Firas wrote:Trish317 wrote:aliyalex wrote:his post disappeared. hello? let's talk. there is too much misinformation being disseminated. let's clear it up.
He must have completely deleted his profile because, as far as I know, it's not possible to completely delete a post. All you can do is edit it. I did a search for him and didn't find anything. Oh well, he was wrong about some things.
I did not delete the post, I don't know what happened, but as far as I know... Patients don't find the treatment in the US because of whatever reasons (since many users misunderstood me)... So patients go to do the treatment outside, and I was suggesting to ask about certain stuff before trusting anyone.
..... And I know US and Canadian doctors are good enough, but the treatment is not available in the US. And people should know that there are a lot of other hospitals and doctors out that provide the same exact medical treatment as in the US and Canada and maybe better. Thanks for understanding...
By the way could somebody refer me to an article or resource when the treatment will be available in the US (I mean Expected time)
The treatment
is available in the US and that's all I'm going to say about it.
Posted: Thu Jul 08, 2010 4:52 pm
by Trish317
Firas wrote:Well if it
is available as you said: where and how much does it cost? and if patients suffer from certain outcomes after the treatment or the treatment didnt work, would they be able to do something? Thanks
Yes, they would be able to do something.
People here at TIMS are very knowledgable about where treatment is available. If you want to know, all you have to do is read the threads here.
Do you have some sort of agenda claiming that treatment is not available here in the US? Because in claiming that to be so you, obviously, do not know what you are talking about. Are you attempting to recruit people to travel somewhere else?