Wow! That sounds like quite a challenge! Were you having to do everything all by yourself?drsclafani wrote:This is incredible. I would have bet all the equity in my house that you would not have had any reduction is your spasticity. It was so bad i had to do the procedure holding your flexed leg with my body while i worked around your leg.phe wrote:Yikes...the case above is the one you had after I kneed you for 3 hrs Friday? And I thought I was challenging.
Here's a wee benefit with mixed emotions...my spasticity is gone for now...yay...but I can't use it to stand up...so rehab it is.
Dr S...you are my hero!
i am so happy tonite!
DrS
DrSclafani answers some questions
- drsclafani
- Family Elder
- Posts: 3182
- Joined: Fri Mar 12, 2010 3:00 pm
- Location: Brooklyn, New York
- Contact:
No, I am well assisted by Smitty. But i had to stand where my patient's knee was flexed and it kept falling so i used my body to keep her comfortable.pklittle wrote:Wow! That sounds like quite a challenge! Were you having to do everything all by yourself?drsclafani wrote:This is incredible. I would have bet all the equity in my house that you would not have had any reduction is your spasticity. It was so bad i had to do the procedure holding your flexed leg with my body while i worked around your leg.phe wrote:Yikes...the case above is the one you had after I kneed you for 3 hrs Friday? And I thought I was challenging.
Here's a wee benefit with mixed emotions...my spasticity is gone for now...yay...but I can't use it to stand up...so rehab it is.
Dr S...you are my hero!
i am so happy tonite!
DrS
No jokes please.
Dr., I have a basic question about bloodflow. When CCSVI is treated, this allows the used blood to exit the brain and spine more easily and quickly. Is it safe to assume then that fresh blood is cycling through easier too? Is that a major benefit of the treatment too then.. that our central nervous system is experiencing more "out with the bad" and "in with the good"?
Hello Dr Sclafani, can you help answer some questions?
I know as a person with ccsvi/ms that the IJV"S are open (hopefully) when I'm lying flat (supine)and the vertebral venous system takes over when I'm standing.
So..... 1/3 of the day we may lie flat and be sleeping and the IJV's drain.
2/3 of the day we may be upright and the vertebral veins drain.
Q, Should the vertebral venous system be investigated then somehow, ie, with our neck above heart level?
Sorry but I have been reading some research from the site below
☛ http://www.descsite.nl/Frames.htm
☛ Publications
☛Academic Thesis
☛Janneke Gisolf ,2004.
This thesis has been prepared in the Cardiovascular Research Institute Amsterdam,
Chapter 2. Cerebral venous outflow pathway is posture dependent pg 13
Research Group on Physiology and Pathophysiology of the Circulation, at the department
of Physiology. The project was financed by Space Research Organization Netherlands
I know as a person with ccsvi/ms that the IJV"S are open (hopefully) when I'm lying flat (supine)and the vertebral venous system takes over when I'm standing.
So..... 1/3 of the day we may lie flat and be sleeping and the IJV's drain.
2/3 of the day we may be upright and the vertebral veins drain.
Q, Should the vertebral venous system be investigated then somehow, ie, with our neck above heart level?
Sorry but I have been reading some research from the site below
☛ http://www.descsite.nl/Frames.htm
☛ Publications
☛Academic Thesis
☛Janneke Gisolf ,2004.
This thesis has been prepared in the Cardiovascular Research Institute Amsterdam,
Chapter 2. Cerebral venous outflow pathway is posture dependent pg 13
Research Group on Physiology and Pathophysiology of the Circulation, at the department
of Physiology. The project was financed by Space Research Organization Netherlands
Last edited by linsand on Wed May 18, 2011 5:41 pm, edited 3 times in total.
- 1eye
- Family Elder
- Posts: 3780
- Joined: Wed Mar 17, 2010 3:00 pm
- Location: Kanata, Ontario, Canada
- Contact:
You guys might be interested in the weird device thing I was talking about in the Random CCSVI Notions thread, as I am starting to get some of that stiff-knee spasticity at night myself, and for some reason this gizmo seems to do something. Sometimes as an alternative my good wife massages my feet. Instant relief. Really. Ours not to reason why.
This unit of entertainment not brought to you by FREMULON.
Not a doctor.
"I'm still here, how 'bout that? I may have lost my lunchbox, but I'm still here." John Cowan Hartford (December 30, 1937 – June 4, 2001)
Not a doctor.
"I'm still here, how 'bout that? I may have lost my lunchbox, but I'm still here." John Cowan Hartford (December 30, 1937 – June 4, 2001)
- drsclafani
- Family Elder
- Posts: 3182
- Joined: Fri Mar 12, 2010 3:00 pm
- Location: Brooklyn, New York
- Contact:
There is reduced blood flow and what you say may be true but this is an opportunity for someone to have a career researching itpklittle wrote:Dr., I have a basic question about bloodflow. When CCSVI is treated, this allows the used blood to exit the brain and spine more easily and quickly. Is it safe to assume then that fresh blood is cycling through easier too? Is that a major benefit of the treatment too then.. that our central nervous system is experiencing more "out with the bad" and "in with the good"?
She wanted me to post saying that she plans on reporting her side of the experience once she is back home and rested a bit.pklittle wrote:Dr., will you please let us know if/when this lady reports benefits? I am particularly interested in knowing about this case. I assume she does not post here(?)
It is great to read about all the new things you are discovering!
I was impressed when you said this the other day, that even with my 99% occluded left jugular, with IVUS the true diameter could still be measured distal to the occlusion.FROM THE IVUS, ONE CAN SEE THE CORRECT SIZE OF THE VEIN. DILATING MUCH ABOVE THE NORMAL VEIN SIZE WOULD SIMPLY RESULT IN RUPTURE AND ULTIMATE RETHROMBOSIS. THAT IS THE POWER OF IVUS. EVEN IN AN OCCLUSION, WHERE VENOGRAPHY DOES NOT SHOW THE LUMEN, WE CAN DECIPHER THE TRUE DIAMETER AND PROPERLY SIZE THE BALLOON.
Thank you for all the responses!
- WeWillBeatMS
- Family Elder
- Posts: 169
- Joined: Wed Feb 03, 2010 3:00 pm
- Contact:
Hey save some equity in your house for when my right ear pops open while I'm on your table!drsclafani wrote:This is incredible. I would have bet all the equity in my house that you would not have had any reduction is your spasticity. It was so bad i had to do the procedure holding your flexed leg with my body while i worked around your leg.
i am so happy tonite!
DrS
WeWillBeatMS
Reduced in, out, or both?drsclafani wrote:There is reduced blood flow and what you say may be true but this is an opportunity for someone to have a career researching itpklittle wrote:Dr., I have a basic question about bloodflow. When CCSVI is treated, this allows the used blood to exit the brain and spine more easily and quickly. Is it safe to assume then that fresh blood is cycling through easier too? Is that a major benefit of the treatment too then.. that our central nervous system is experiencing more "out with the bad" and "in with the good"?
It seems logical to me that improving the complete cycle of bloodflow is what this is all about. That feeding the nervous system better makes it healthier, or at least feel healthier anyway. That even if an area has damage, that it is masked in some cases by providing a better supply of fresh blood.
Is anyone taking the opportunity and researching this???
Hi Dr. Sclafani,
Because my left transverse sinus is missing, I'm very interested in your recent work with guidewires/catheters being pushed through the intracranial dural sinuses, and I have some questions:
1. What are the possible risks/complications of this procedure?
2. What is the follow-up protocol for these patients?
Thank you!
Because my left transverse sinus is missing, I'm very interested in your recent work with guidewires/catheters being pushed through the intracranial dural sinuses, and I have some questions:
1. What are the possible risks/complications of this procedure?
2. What is the follow-up protocol for these patients?
Thank you!
- drsclafani
- Family Elder
- Posts: 3182
- Joined: Fri Mar 12, 2010 3:00 pm
- Location: Brooklyn, New York
- Contact:
yes. but this is not only about improving blood inflow by opening outflow. there is also a lot of problems with drainage of the CSF when the veins are obstructed.pklittle wrote:Reduced in, out, or both?drsclafani wrote:There is reduced blood flow and what you say may be true but this is an opportunity for someone to have a career researching itpklittle wrote:Dr., I have a basic question about bloodflow. When CCSVI is treated, this allows the used blood to exit the brain and spine more easily and quickly. Is it safe to assume then that fresh blood is cycling through easier too? Is that a major benefit of the treatment too then.. that our central nervous system is experiencing more "out with the bad" and "in with the good"?
It seems logical to me that improving the complete cycle of bloodflow is what this is all about. That feeding the nervous system better makes it healthier, or at least feel healthier anyway. That even if an area has damage, that it is masked in some cases by providing a better supply of fresh blood.
Is anyone taking the opportunity and researching this???
Dr Beggs will be discussing thisat my NYC symposium on july 16.
Start studying your CSF hydrodynamics!
STENTING WITH DR SCLAFANI???? YES!
Dr. Sclafani,
I'm here to tell you and everyone that it CAN be done and it WAS done beautifully 5/16, by Dr. Sclafani, himself. Stent(s) from Dr. Sclafani? I was a little unnerved. Fortunately, I had a week to process the whole idea when you told me Sat, 5/7. When I arrived Monday morning I was ready.
I knew from part I of this procedure Sat 5/7 and your comments to Smitty during part II on Monday, that you still had difficulty opening my left IJV , so I was concerned, but everything went smoothly and I walked out two hours later with two stents in my now wide-opened left jugular.
My neck is still a little sore but not bad enough to take anything for it. Improvements so far (2 days):
1. less fatigue/more stamina
2. bladder urgency/control
3. foot temperature and color
4. ease of walking. I still have the foot drop but somehow my walking is more "fluid" and a little faster (according to observers).
One nice thing is that my sisters told me that my face looks less drawn and I look younger. (better than Botox?) but I haven't noticed that.
Questions:
1. Does Coumidin have to be for 6 months?
2. Do I have to avoid certain neck movements?
3. Can these stents break?
And at the risk of sounding incredibly corny I'm going to say that you didn't just open a vein for me, Dr. S, you opened a door for me. If I don't get anything else, I now have hope...and possibilities. Everyone needs that. You truly are a "salvatore" ("savior" in Italian)
Mille grazie! Thank you so much!
Laura
I'm here to tell you and everyone that it CAN be done and it WAS done beautifully 5/16, by Dr. Sclafani, himself. Stent(s) from Dr. Sclafani? I was a little unnerved. Fortunately, I had a week to process the whole idea when you told me Sat, 5/7. When I arrived Monday morning I was ready.
I knew from part I of this procedure Sat 5/7 and your comments to Smitty during part II on Monday, that you still had difficulty opening my left IJV , so I was concerned, but everything went smoothly and I walked out two hours later with two stents in my now wide-opened left jugular.
My neck is still a little sore but not bad enough to take anything for it. Improvements so far (2 days):
1. less fatigue/more stamina
2. bladder urgency/control
3. foot temperature and color
4. ease of walking. I still have the foot drop but somehow my walking is more "fluid" and a little faster (according to observers).
One nice thing is that my sisters told me that my face looks less drawn and I look younger. (better than Botox?) but I haven't noticed that.
Questions:
1. Does Coumidin have to be for 6 months?
2. Do I have to avoid certain neck movements?
3. Can these stents break?
And at the risk of sounding incredibly corny I'm going to say that you didn't just open a vein for me, Dr. S, you opened a door for me. If I don't get anything else, I now have hope...and possibilities. Everyone needs that. You truly are a "salvatore" ("savior" in Italian)
Mille grazie! Thank you so much!
Laura
I just did a little wikipedia reading on CSF, how it turns over 3.7 times/day through the vascular system. I understand a tad more what CCSVI really means now. Heavy stuff.yes. but this is not only about improving blood inflow by opening outflow. there is also a lot of problems with drainage of the CSF when the veins are obstructed.
Dr Beggs will be discussing thisat my NYC symposium on july 16.
Start studying your CSF hydrodynamics!
STENTING WITH DR SCLAFANI???? YES!
Dr. Sclafani,
I'm here to ask you a few questions and to tell everyone how you stented my completely occluded left jugular vein.
With the left jugular closed again (as you predicted) you had difficulty re-opening my left IJV, even after that impressive rendezvous procedure on day 1. So I was a little worried about the outcome, but everything went smoothly and I walked out two hours later with not one, but two stents in my now wide-opened left jugular.
My neck is still a little sore but not bad enough to take anything for it. Improvements so far (2 days):
1. less fatigue/more stamina
2. bladder urgency/control
3. foot temperature and color
4. ease of walking with cane. I still have the foot drop but somehow my walking is more "fluid" (according to observers).
5. more positive mood. (is this a placebo effect? relief that I have opened veins? I don't know but I feel great)
One extra benefit is that my sisters told me that my face looks less drawn and I look younger. (who needs Botox?) I don't see that, but aren't sisters great?
Questions:
1. Is 6 months of Coumadin set in stone?
2. Can stents break?
3. If it's not too much trouble, could you post my pix so I can see what it looks like in there? I can't open the CD on my computer.
And I want to thank you, doc, for sticking with me and persisting with that stubborn left jugular. You didn't stop until you could do something for me. You proved again that you really do care about your patients outcomes. And at the risk of sounding incredibly corny I'm going to say that when you opened that vein you opened a door for me. If I don't get anything else, I now have hope...and possibilities. You truly are a "salvatore" ("savior" in Italian).
Mille grazie!
Thank you so much!
Laura
I'm here to ask you a few questions and to tell everyone how you stented my completely occluded left jugular vein.
With the left jugular closed again (as you predicted) you had difficulty re-opening my left IJV, even after that impressive rendezvous procedure on day 1. So I was a little worried about the outcome, but everything went smoothly and I walked out two hours later with not one, but two stents in my now wide-opened left jugular.
My neck is still a little sore but not bad enough to take anything for it. Improvements so far (2 days):
1. less fatigue/more stamina
2. bladder urgency/control
3. foot temperature and color
4. ease of walking with cane. I still have the foot drop but somehow my walking is more "fluid" (according to observers).
5. more positive mood. (is this a placebo effect? relief that I have opened veins? I don't know but I feel great)
One extra benefit is that my sisters told me that my face looks less drawn and I look younger. (who needs Botox?) I don't see that, but aren't sisters great?
Questions:
1. Is 6 months of Coumadin set in stone?
2. Can stents break?
3. If it's not too much trouble, could you post my pix so I can see what it looks like in there? I can't open the CD on my computer.
And I want to thank you, doc, for sticking with me and persisting with that stubborn left jugular. You didn't stop until you could do something for me. You proved again that you really do care about your patients outcomes. And at the risk of sounding incredibly corny I'm going to say that when you opened that vein you opened a door for me. If I don't get anything else, I now have hope...and possibilities. You truly are a "salvatore" ("savior" in Italian).
Mille grazie!
Thank you so much!
Laura
-
- Similar Topics
- Replies
- Views
- Last post