CCSVI treatment available in the U.S.!

[jcher]

We initially called on June 2 and received the first call back about a week or two later, telling us that my Mom would probably be scheduled in September/October. We have heard nothing since. A couple of weeks ago I finally e-mailed them and asked if they could give me an approximate timeline as to when her appointment might be scheduled, and they told me to expect it sometime "within the first quarter of the new year". So....that was disappointing.

[TFau]

Thanks jcher! That is disappointing! I think that I'll be able to stop obsessing for a while now though.

[Donnchadh]

Do you mind if I ask why you needed this procedure 3 times?
If your veins are collaping after the procedure would not stents be a more permanent (and cheaper) solution?

Fair question. The first procedure found the problem-bilateral stenosis in the internal jugular veins-and was treated by venoplasty. The results were a dramatic improvement in symptoms but the veins completely collapsed after six days. I went back to the IR and we started talking about stents BUT in the meantime his hospital slapped an IRB requirement on him. So he couldn't do anything for me.

The second attempt was at a different hospital. Again the IR ballooned just the left hand side because he couldn't visualized the right side. I now think he was being extremely conservative about what he did. However, the ballooned left vein does seem to be staying open so far.

Maybe just a balloon procedure on the right side is all that is needed?

So I am at a crossroads, the right hand side is still closed and I wonder if stents would be the best long term solution or should I wait for improvements in stent designs?

Personally, based on my own personal experiences, anyone undergoing the liberation procedure should be prepared for the possibility of having the treated veins to re-stenosis. So realistically, I think most patients will be facing two procedures to correct CCSVI.


Donnchadh

[BadCopy]

Columbia Endovascular Associates/Interventional Radiology is now providing CCSVI Testing and Treatment.

Located in New York city


off of the ccsvi locator. I know nothing more than the info you see

http://ccsvi-ms.ning.com/profiles/blogs ... dovascular

[vivavie]

Colombia vascular (CCSVI locator) and dr Sperling (Facebook) are the same. I called they schedule the procedure 2 weeks AFTER the consultation. It is OK for locals but twice 8hrs drive? in NewYork?? I am torned... plus he is new at this...

I hope this inspires other IR because this past month I have called about every listed ones within an 8hrs circle (from QC) and aside from Siskin and Mehta, they all turned me down: "it is illegal in the US!".

[BadCopy]

I'm sorry but I would laugh at any medical professional that tells you that this procedure is illegal. I have spoken to several here in MN that straight out said they wouldnt do it, but none of them have been stupid enough to tell me it's illegal.

Did you get on the Siskin and Mehta list?

[MaggieMae]

When I talked to Mehta's office they also said you must first have consultation and then return for the procedure. That does make it difficult for those who have to travel. Not counting if you should have to return for follow-up after procedure.

[vivavie]

Yes I am on Siskin and Mehta lists but the wait is lllllllllllooooooonnnnnnngggggggg.

When you try to make contact with all the IR it is very difficult to pass the reception, you leave a message, they talk to the doctor, the receptionist calls you back. Pointless to laugh or argue... Sometimes you can get an email adress, then compose a nice letter, blablabla and sometimes you send informations. It is very time and energy consumming... It is also very difficult when you live far and you mother tongue is not English.

I will also take this opportunity to mention that I take offense when people that went oversea are call "stupid" or whatever word used! The real pioneers are the ones that pursued it a year ago right after Zamboni published. I am forever grateful of them because I would have never found out about it. But people that took a chance, had the guts to travel to poland, bulgaria (..) last winter and spring are the ones that brought back the evidence and created the numbers that in return created the demand and then the momentum! Otherwise do you really think that more and more doctors would be setting up shop?????

And now we cannot get treated here because we have been "modified" elsewhere and doctors don't want to take responsability for others. Now we have problems with stents that if not treated quickly it won't be possible to open again and we have to go back in line. Months or a year wait will be too late for me!

So yes I am frustrated and NO I am not stupid. I just never give up, very stubborn and determinated even if sometimes I have the blues... I am not sure that every one on this panel can say as much!

[Cece]

I feel bad for drsiskin, I doubt he meant any personal offense.

Of course I feel even worse for anyone who needs follow-up and can't get it.

Back when I was scheduled with Dr. Sclafani, he had me down for two full days of testing, then the treatment on a Wednesday, then the weekend, then a follow-up the following Monday. That was already being shortened by the time the IRB stepped in and saved all us patients from our appointments (/sarcasm) although not from our disappointment.

[vivavie]

I know Cece, it must have been so hard to take when you get so close and whoopss it is gone. No I am talking about the ones that critisize and judge our "foolish" action but they never did nothing more than pick the phone and make an appointment. If it is so easy for them because of the pionners and the bulls and the others that are implicated/spread the words/knock on doors/do the digging/ find the research. All those people are paving the road so that life get better for the others. You are certainly one of those in my mind.

[HappyPoet]

Hi Everyone,

For Dr. Mehta, ONLY ONE WEEK IS NEEDED:

He offers out-of-towners the consultation with venogram/venoplasty on a Monday or Tuesday *and* venoplasty of second jugular and/or azygos on Friday of the SAME week.

His list is getting long, and pwMS are coming from as far away as Canada and Europe. For a while, I thought doctors' lists were becoming shorter, but I'm now wondering if word of CCSVI is reaching deeper into the MS-patient populations around the world.

Because I live locally, my appointments are fit into the schedule after the out-of-towners are scheduled, which is okay by me... after all, people with CCSVI/MS who travel have it hard enough, imho. So, I was fit in at the end of the day and had to wait a long time before my name was called, but being grateful for the opportunity to be treated, I tried waiting with grace and patience; however, it was my narcolepsy which helped with the waiting the most.

Dr. Mehta runs a first-rate operation -- he and all his staff are wonderful and professional. I posted on the Tracking sticky thread: http://www.thisisms.com/ftopicp-128269.html#128269

He talked to me before, during and after the CT catheter venography and venoplasty, and he let me ask questions at anytime.

Something was given to me by I.V. to relax me, and I felt nothing during the procedure, nothing at all -- this was absolutely perfect, not too much of the med(s) and not too little... I can't say enough about how great they were with this because I take heavy pain control and spasticity meds at heavy dosages (methadone, Oxycontin, Lyrica, Keppra, baclofen) which makes such a job so much more difficult, and they nailed it.

The insertion point on my groin healed perfectly, no problems at all. He does not prescribe blood thinning or platelet-coating meds.

After the procedure was over while I was still on the table, he showed me the video on the monitor, and the pictures were amazing to watch. I actually got to see my IJV's inverted valve near the subclavian level (very cool), and being able to see the blood flow blocked and then free-flowing was a humbling experience. R-IJV was blocked 90%. L-IJV is blocked 80% until...

I go back in two weeks, 8/24/10, to have my other jugular's inverted valve ballooned via the same CT catheter venoplasty. I'll be able to receive a CD that contains all images/video.

Best of luck to all.

~HP

EDIT: I'm copying this post to the Dr. Mehta/Kacey thread.

[aliyalex]

thanks pam,

i've read your tracking entry an update on TIMS thread. thank you for blazing the trail and generously reporting back.

did he go in on the right or left? do you know what size balloon he uses? thanks. aliyah

[HappyPoet]

Hi aliyah,

Good questions!

He goes in using both legs. During the first procedure, he'll use the right leg, and during the second procedure, he'll use the left leg (or vice-versa), BUT every patient is different, so perhaps there are exceptions I don't know about?

I'll be asking about the ballooning (type, size, amt of pressure (# of atmospheres), time opened) at my second procedure so I can compare the first ballooning to the second ballooning (more meaninful to me that way).

~Pam

[SofiaK]

Does anyone have any idea how many procedures Dr. Siskin does each week? OR month??

I have been told that I'm 25th in line and Rachelle is hoping to fit me in for a September date.

Now, I think October is more likely. I just wonder when about so I can ask + book someone to drive me.

Thanks for anyone who replies with some idea.

[siduri]

I'd heard somewhere that Dr. Siskin and the other two drs at that clinic do 90 to 100 patients a month. How did you find out where you were on the list? All I seem to be able to do is wait, wait, wait!

My callback was 6/22, 7 weeks ago, but I have no idea how many people are on the list. I'm so worried that I'll miss the call because that seems to be my only link. I would think you'll be going in September if you're #25 now. Best of luck!