Update on Manoj, our India Pioneer Stentee!

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Update on Manoj, our India Pioneer Stentee!

Postby CureIous » Mon Mar 01, 2010 11:07 pm

Thought I'd start a new thread for his actual procedure, as there will be images and more info forthcoming in the future. Manoj graced us with his presence back around December. http://www.thisisms.com/ftopicp-95033-manoj.html#95033.

Just to recap, he sent me his scans, I posted up some of them, made a cheesy Youtube out of them, http://www.youtube.com/watch?v=xpp0upUzsGc but the scans were pretty low-rent compared to what we usually see on CD's etc.
Mainly that was just to document and discuss for future reference, goes without saying, this isn't a diagnostic center, but we were all venturing on the journey at the same time.

I was convinced in my own puny brain, that if he got properly scanned, there would be something to see. Yes, I know we can't TELL people that, which is pure foolishness, but in this case, should he get properly tested, and show CCSVI, this could be inspirational for others. Why?

1. Manoj got an MRV, along with a really nice looking ultrasound.
2. He then received a resounding "NEGATIVE" on the results. (heard that story a few times already have we not?). Yes, this is very disheartening when encountered as we've seen so many times already.
3. He then ventured out to other hospitals, armed with all the protocols and info he could get his hands on, and voila, wonder of wonders, stenosis.
4. He was able to get a hold of a competent Neuro Interventional Radiologist, who agreed to treat based on the new scans, and what they showed.
5. He was treated with a 60 mm long, 10mm diameter stent, on the right side, which many of us had seen looked to be diminutive at best, and/or the "if I had to guess" spot.

People, this should serve as an inspiration to all of us, Don't-Give-Up until you have exhausted every angle, and even then, who's to say based on our recent reports in here, that there's not a transient aspect to all of this?

More to come in the future, including pics and info related to the procedure itself. It was a typical groin access+catheter+stent into his right side, nothing but scanning done on the left side.

The surgeon's comment during the procedure, was that the blood was "trickling" down the Right IJV.

After stent placement, of course that situation changed drastically.

Manoj is resting uncomfortably at home, he is on aspirin and plavix for the time being. His follow up will be in 3 weeks. He is experiencing some pain, but ala most of us Stanford people, that's not likely to be an ongoing thing but for some it takes time. I asked im about shoulder pain, he has none on the right side.

Remember, this was a negative scan.

Image

Manoj will be doing his own website soon, and is currently posting info at facebook under "ccsvi India".

We should all be extremely proud of what Manoj has done on his own, and hopefully will serve as an inspiration for people, to never give up, and that they CAN do it on their own, if they so desire of course, and that's not implying that everyone SHOULD do it on their own, but just saying....


More to come, rest easy Manoj you done good!!!!!!!

Mark.

PS, the total bill for one stent placement, out the door, was 6,000 US.
Breaking that down:
1,000 for stent itself.
2,500 for the surgeon.
1,000 for the operating theatre.
700 for room, incidentals.
Not sure it the rest was for the initial testing, which I believe was close to 500.

Will update later with the hospital/doctor info if anyone is interested. From what Manoj has related from the operation, he was in very competent hands.

Either way, for the cost of just two stents in the US, he had the entire procedure done over there, and this was a FIRST for the doctor in this particular application, but he was confident that it was doable. Post procedure, he showed good flow on right/left sides. The operation itself, was a success. Manoj has not reported any major improvements as of today, but it's early so we'll wait.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
User avatar
CureIous
Family Elder
 
Posts: 1202
Joined: Tue Jul 14, 2009 3:00 pm
Location: Riverside, CA

Advertisement

Postby sbr487 » Mon Mar 01, 2010 11:58 pm

Marc, any idea what are Manoj's primary symptoms?
User avatar
sbr487
Family Elder
 
Posts: 860
Joined: Tue Nov 24, 2009 4:00 pm
Location: India

Postby Johnson » Tue Mar 02, 2010 12:17 am

Great news Manoj!

And thanks, Mark, for helping him out with the imagery.
My name is not really Johnson. MSed up since 1993
User avatar
Johnson
Family Elder
 
Posts: 979
Joined: Tue Dec 01, 2009 4:00 pm
Location: Ucluluet, BC

Postby CureIous » Tue Mar 02, 2010 12:33 am

sbr487 wrote:Marc, any idea what are Manoj's primary symptoms?


Usual early (CIS) presenting stuff, fatigue, cog fog all that nebulous fun stuff.

HOT off the presses, pics from Manoj's procedure, before/after.
Image
Boy done good....
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
User avatar
CureIous
Family Elder
 
Posts: 1202
Joined: Tue Jul 14, 2009 3:00 pm
Location: Riverside, CA

Postby CureIous » Tue Mar 02, 2010 12:42 am

No explanation needed on this one...

Image
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
User avatar
CureIous
Family Elder
 
Posts: 1202
Joined: Tue Jul 14, 2009 3:00 pm
Location: Riverside, CA

Postby Salvatore24 » Tue Mar 02, 2010 12:44 am

What was the previous MRV like? Because if they didn't pick up that stenosis the first time, I think they should either have their eyesight checked, or review how competent they are at reading scans.
User avatar
Salvatore24
Family Elder
 
Posts: 109
Joined: Sun Nov 29, 2009 4:00 pm
Location: Melbourne, Australia

Postby CureIous » Tue Mar 02, 2010 12:50 am

The above is from the procedure itself, and it's invasive, aka "venogram".

But, the 2nd MRV he did, was exculpatory enough to perform the above procedure. I posted the old scan above to youtube, dont have the 2nd one, but am very glad to have some venogram shots from the procedure which Manoj is sharing with me on Messenger right now.

The 1st one we pretty much all knew, wasn't good enough quality to do much of anything with but print out and use for scratch paper, but, for 150 bucks, can't beat the price lol... M
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
User avatar
CureIous
Family Elder
 
Posts: 1202
Joined: Tue Jul 14, 2009 3:00 pm
Location: Riverside, CA

Postby babiezuique » Tue Mar 02, 2010 11:52 am

Curious! you are becoming very good at reading and finding things poeple dont know! This Manoj story is an inspiration for me... to because i received a result from a venous doppler i did here in Montreal and i wanted to have your opinion on the way they are giving me the results...



They say they follow the zamboni's protocol. The only test they offer to diagnose CCSVI is this craniocervical venous doppler. They dont offer neither the extracranial doppler neither the MRV. We all know that a venour doppler is not enougnt to conclude anything.

this is the result a received from them:

Final diagnostic imaging report from DR Jeff CHankowsky he is a neuro radiologist who work at MC Gill Hospital

Craniocervical venous doppler

Technique:

The examination was perform according to Zamboni protocol, evaluating the cervical, jugular and vertebral venous system, both supine an upright.

Findings:

Both internal jugular veins demonstrate prominent cardiocentric flow in the supine position, wich is normal. Very tiny amounts of reflux are seen
lasting less than 0,25 seconds, wich is normal. In the upright position, both internal jugular veins collapsed significantly, wich is an expected finding.

No anatomical stenoses nor compressions of the jugular veins are noted.

In the supine position, the vertebral veins demonstrate proper flow toward the heart. However there is a definite left vertebral venous reflux with the head rotated to the right in the supine position. This reflus is sustained and is pathological.

The remainder of the study demonstrates no other fondings that are pathological.

Conclusion:

This study demonstrates only one pathological entity, wich is susustained reflux in the vein int he upright position,wich only satisfies one of the five Zamboni's criteria for a positive screening doppler examination. Acording to the recent publication, at least two findings should be present for the study to be consider a positive screening study.

Therefore, this study demonstrates one abnormality, which might be an incidental finding.

Reported by doctor Jeff Chankowsky Mc Gill Hospital


1- how come they tell me i dont encounter the CCSVI criteria for a ccsvi while I only did a doppler that is not an extracranial one... They tell me i dont have ccsvi.... but this test can not be in any way conclusive.

I need your point of view on this!
urious! you are becoming very good at reading and finding things poeple dont know! This Manoj story is an inspiration for me... to because i received a result from a venous doppler i did here in Montreal and i wanted to have your opinion on the way they are giving me the results...
User avatar
babiezuique
Family Elder
 
Posts: 121
Joined: Mon Dec 07, 2009 4:00 pm
Location: Montreal

Postby manojag22 » Wed Mar 03, 2010 12:21 am

The doctor details is provided in the link who performed ccsvi procedure on me, his name is Dr. Anil Karapurkar.

http://www.peopleagainstbrainattack.com ... fault.aspx
User avatar
manojag22
Family Member
 
Posts: 78
Joined: Fri Sep 18, 2009 3:00 pm
Location: mumbai

Postby larmo » Thu Mar 04, 2010 12:59 am

babiezuique, someone else posted on this site a day or 2 ago almost the exact same thing - looks like the form letter version. The 'clinic' probably does not have the capability's to perform the treatment. But they have no problem charging you so they can tell you it doesn't meet Zamboni's criteria. They only have the equipment to test for only 1 of the criteria. They know that it is impossible for them to confirm CCSVI. That's not going to stop those blood suckers from capitalizing.

A dime will get you a dollar says they have NEVER had a patient who met Zamboni's criteria !!! and they never will, but they will continue to capitalize as long as humanly possible.

To people like them, "Do No Harm" means 'do no harm to them' like taking away their ability to capitalize off of those less fortunate. You have to put on a real warped mindset to understand their warped mentality. You should post a warning with the name of the clinic. You would be doing others a big favor and hopefully causing them some losses at the same time.
User avatar
larmo
Family Member
 
Posts: 57
Joined: Sun Feb 14, 2010 4:00 pm

Postby manojag22 » Mon Mar 08, 2010 7:15 am

Dear all friends, if you are planning a CCSVI procedure abroad, please get your test/diagnostic done locally since if you do that abroad and it comes out false negative what wll you do.. So my suggestion get yourself locally diagnosed and then go for procedure at your will in any place or country.
User avatar
manojag22
Family Member
 
Posts: 78
Joined: Fri Sep 18, 2009 3:00 pm
Location: mumbai

Postby manojag22 » Wed Mar 10, 2010 4:13 am

Another doctor in Mumbai who can perform the procedure is Dr Vimal Someshwar

Head, Department of Radiodiagnosis,Kokilaben Ambani


http://www.kokilabenhospital.in/profess ... index.html


Hospitalhttp://www.kokilabenhospital.in

/Doctors Profile | Kokilaben Dhirubhai Ambani Hospital and Medical Research Institutewww.kokilabenhospital.in
User avatar
manojag22
Family Member
 
Posts: 78
Joined: Fri Sep 18, 2009 3:00 pm
Location: mumbai

Postby manojag22 » Wed Mar 10, 2010 5:51 am

The doctor who did the procedure on me is now asking for $25000/- for it as someone from outside India contacted him. I paid 1/5 of that to him, so CCSVI causing huge inflation.
User avatar
manojag22
Family Member
 
Posts: 78
Joined: Fri Sep 18, 2009 3:00 pm
Location: mumbai

Postby costumenastional » Wed Mar 10, 2010 6:25 am

hahaha here we go....

Hey, maybe i could pass for Indian since my skin is kind of dark ;)

Seriously... thank you Mano.
User avatar
costumenastional
Family Elder
 
Posts: 740
Joined: Sat Jan 31, 2009 4:00 pm
Location: Greece

Postby Vhoenecke » Thu Mar 11, 2010 7:55 am

You are right about the inflation but that is not different than the HUGE inflation from the drug companies.

Val
User avatar
Vhoenecke
Family Elder
 
Posts: 332
Joined: Sat Dec 12, 2009 4:00 pm
Location: Rosetown, Canada

Next

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service