Update on Manoj, our India Pioneer Stentee!
Posted: Mon Mar 01, 2010 10:07 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, 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.
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.
Just to recap, he sent me his scans, I posted up some of them, made a cheesy Youtube out of them, 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.
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.
