HERE I GO AGAIN

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

Re: HERE I GO AGAIN

Postby 1eye » Fri May 25, 2012 4:06 pm

I have lived with the results of my wife's failed bunion surgery. She was very young. She has had to walk on it all these years. I think surgery is not to be discussed with people you don't even know, when you are not a doctor. I only feel marginally ready to discuss the CCSVI angioplasty procedure. I have had three angioplasties, two for my heart, one for CCSVI. None of them was surgery (which I have had, on other occasions). I can not recommend anything medical, as I am not a doctor. I just hope for the best result for you.

All I can say is, please be careful. Though I don't know you, your getting better would be a great thing in my small universe. I hope you have and don't have the medical help you do and don't need.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
User avatar
1eye
Family Elder
 
Posts: 2962
Joined: Wed Mar 17, 2010 3:00 pm
Location: Kanata, Ontario, Canada

Advertisement

Re: HERE I GO AGAIN

Postby LR1234 » Fri May 25, 2012 8:09 pm

I agree 1eye,. I think surgery is not something to take lightly.
For me personally now I would never travel abroad to have surgery (made that mistake before) and I would advise anyone with clots to not get treated until available in their own country.

I hope for Dania though that this was the right decision and it works for her.

Dr Moguel, Why not put the link here for everyone to see then it can be discussed......??
LR1234
Family Elder
 
Posts: 1505
Joined: Wed Feb 11, 2009 3:00 pm
Location: California

Re: HERE I GO AGAIN

Postby dania » Sat May 26, 2012 8:09 am

Hi.The internet has was down here for a day. Surgery this time was easier than the last one. Actually a piece of cake. No changes yet. Dr H says my veins are infantile, very small. Said we have to wait as there is so much swelling in my neck (from the surgery). They put me in the executive suite on the 14th floor, great view.
Dr H only did a jugular bypass. Did not connect to vertebral vein as it was small.
The reason I am sharing my experience is to give some hope to those who have restenosed after multiple angioplasties. If this does not help me Dr H is already thinking of what else can be done to help me. The whole team here is by far the best I have every had the pleasure to be taken care by. From the doctors, nurses to the office staff, Tina and Paulina.
User avatar
dania
Family Elder
 
Posts: 1088
Joined: Wed May 12, 2010 2:00 pm
Location: St Lazare Quebec

Re: HERE I GO AGAIN

Postby dania » Sat May 26, 2012 9:27 am

I encourage both Dr Moguel and Dr Sclafani, if they are truly interested in getting accurate information on this surgical procedure to contact Dr Hernandez 1-800-211-0690. And after talking with him you can make an informed opinion.
User avatar
dania
Family Elder
 
Posts: 1088
Joined: Wed May 12, 2010 2:00 pm
Location: St Lazare Quebec

Re: HERE I GO AGAIN

Postby Cece » Sat May 26, 2012 12:25 pm

Glad you're doing well, dania. It was rather poor timing for the internet to go down! Just testing our hearts, perhaps.
I would not dismiss Dr. Sclafani or Dr. Moguel's opinion on the basis that they have not talked to Dr. Hernandez. They both stated that they had consulted with vascular surgeons and colleagues.
Cece
Family Elder
 
Posts: 9040
Joined: Mon Jan 04, 2010 3:00 pm

Re: HERE I GO AGAIN

Postby dania » Sat May 26, 2012 1:01 pm

Cece wrote:Glad you're doing well, dania. It was rather poor timing for the internet to go down! Just testing our hearts, perhaps.
I would not dismiss Dr. Sclafani or Dr. Moguel's opinion on the basis that they have not talked to Dr. Hernandez. They both stated that they had consulted with vascular surgeons and colleagues.

Not dismissing. I am not the expert, Dr H is. Better to get info from the horse's mouth and ask him what his operation entails. My veins had died after 2 angioplasties. They had become thin fibrous strings. So further angios were impossible. Dr H has performed this operation on others who have had wonderful results. He says I am a special case probably due to my small veins and the hypercoagulation problem I have.
User avatar
dania
Family Elder
 
Posts: 1088
Joined: Wed May 12, 2010 2:00 pm
Location: St Lazare Quebec

Re: HERE I GO AGAIN

Postby dania » Mon May 28, 2012 9:06 am

I have a feeling that my bypassed vein has collapsed. As I felt much better right after the surgery (it was incredible, felt normal) and could move my left foot for the first time in years but within an hour it all disappeared. Dr H says my veins are infantile,very small. He has already contacted 2 neurosurgeons about my problem in hope of draining the blood from my head by another way. He does not give up on helping his patients. Always thinking what else can be done. An amazing doctor, I know I am in the right hands and at the right place. What other doctor would do this?
User avatar
dania
Family Elder
 
Posts: 1088
Joined: Wed May 12, 2010 2:00 pm
Location: St Lazare Quebec

Re: HERE I GO AGAIN

Postby PointsNorth » Mon May 28, 2012 10:48 am

Hi Dania,

I'm pulling for you! Given the results you experienced immediately following the procedure, perhaps the heparin you might have received had a positive effect on your hypercoagulability? Maybe you could benefit from a course of low-dose heparin? I'm currently pursuing this for myself. There seems to be a large number of conditions that involve hypercoagulability and there has been a lot of discussion about it here at thisisMS over the years.

Best, PN
Albany 2010. Brooklyn 2011
Hayes inspired Calcitriol+D3 2013-2014
Coimbra Protocol 2014-
PointsNorth
Family Elder
 
Posts: 529
Joined: Mon Sep 04, 2006 2:00 pm
Location: LeftCoast Canada

Re: HERE I GO AGAIN

Postby dania » Mon May 28, 2012 12:06 pm

I am on Coumadin and have been for over 10 years. My INR is consistently at 2.5 and must be kept between 2 and 3. So I am adequately anti-coagulated. I still managed to get clots in my stent after my first angioplasty. Dr H just interrupted my writing. He said I am a special case as he can normally help his patients, but my case is frustrating him (his words) as he as not been able to help me so far. He said to wait a few months and if I do not improve he will figure out some other way to help me. Said it would be definitely be something out of the box. I said sign me up. What a compassionate doctor. I have never in my life come across a doctor like this. He refuses to give up on finding a solution to my problem.
User avatar
dania
Family Elder
 
Posts: 1088
Joined: Wed May 12, 2010 2:00 pm
Location: St Lazare Quebec

Re: HERE I GO AGAIN

Postby blossom » Mon May 28, 2012 5:05 pm

wow dania, this is a rare breed of dr. more are needed. when i had the ccsvi treatment and woke up with a numb leg and questioned-just a look no answer-called-no answer for it. felt pretty much kicked to the curb. "and this was in the states."

when this dr. gets you fixed up with you being rare. who knows what this will bring to the table as far as getting all this figured out in the long run for more people than just you.

you are one tough cookie and with all you have been through. my thoughts and prayers to you and dr. h.
User avatar
blossom
Family Elder
 
Posts: 1377
Joined: Thu Dec 03, 2009 3:00 pm
Location: south western pa.

Re: HERE I GO AGAIN

Postby LR1234 » Tue May 29, 2012 10:25 am

Hey Dania,
Can you ask Dr H a couple of questions for me??

1. Can removing the veins that are damaged encourage other collaterals to grow in its place

2. Can taking someone elses jugular who has passed away be an option? or at the very least taking someone's saphenous (sp??) vein from someone?
(I know my family members would donate the leg vein if it meant it would help, maybe you have someone who could do that for you...)

I am so so sorry to hear what you are going through Dania. You know my thoughts and prayers are with you and I so hope you get some good news soon. I know you hate being called a brave lady as I understand you are just trying to survive and improve your quality of life but you are a very determined lady and with that strength of character I hope you get the best outcome xx
LR1234
Family Elder
 
Posts: 1505
Joined: Wed Feb 11, 2009 3:00 pm
Location: California

Re: HERE I GO AGAIN

Postby Cece » Tue May 29, 2012 10:43 am

Have you had an ultrasound post-procedure thats shows the vein to be closed? That happened so fast if it has. Maybe it hasn't?
"Something out of the box" - I can't imagine. I've wondered if a PTFE graft would be better than a saphenous vein graft because, as bascially a teflon tube, it would stay the same diameter and not collapse upon standing, if collapsing is part of what leads to the clotting (with the low flow being the other factor).
Right now I'm pulling for the vein graft to take, and that you start to feel the difference as any inflammation subsides.
Cece
Family Elder
 
Posts: 9040
Joined: Mon Jan 04, 2010 3:00 pm

Re: HERE I GO AGAIN

Postby dania » Wed May 30, 2012 4:24 am

LR1234 wrote:Hey Dania,
Can you ask Dr H a couple of questions for me??

1. Can removing the veins that are damaged encourage other collaterals to grow in its place

2. Can taking someone elses jugular who has passed away be an option? or at the very least taking someone's saphenous (sp??) vein from someone?
(I know my family members would donate the leg vein if it meant it would help, maybe you have someone who could do that for you...)

I am so so sorry to hear what you are going through Dania. You know my thoughts and prayers are with you and I so hope you get some good news soon. I know you hate being called a brave lady as I understand you are just trying to survive and improve your quality of life but you are a very determined lady and with that strength of character I hope you get the best outcome xx

I had already asked him these questions.He was not sure about growing collaterals. He said you can use a cadaver vein but your own is the best.
User avatar
dania
Family Elder
 
Posts: 1088
Joined: Wed May 12, 2010 2:00 pm
Location: St Lazare Quebec

Previous

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service