CCSVI Success (A Christmas Miracle, Frankly)

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

CCSVI Success (A Christmas Miracle, Frankly)

Postby MarkHat » Sat Dec 11, 2010 1:26 pm

I am an attorney, and generally a very cynical person. I am usually of the "glass is half empty" view. Thus, when I heard of this procedure about 5 months ago I was not very interested. My wife Marcy has very advanced MS, 100% bedridden, feeding tube, and unable to speak for almost two years. She is end stage. It was about a 17-year (with interferon/copaxone/etc.) road to this stage. Nothing the doctors had been able to do made much difference.

Something about this procedure nagged at me, though. I started reading up on it at sites such as this one, and decided to start the process. We live in San Diego, so I decided to go to Hospital Angeles in Tijuana, about 15 miles from where I live. It was a big pain to get a passport given Marcy's being unable to communicate (and with an expired driver's license), but we got it all together and headed south. Marcy was not cognizant of what was going on. I felt that even if something terrible happened, she could not be worse than she currently was.

The testing showed one jugular was 70% blocked, the other 99%. The latter required a stent to keep open. I did not want to do a stent, but felt Marcy had virtually no hope as it was, so it was not the more serious decision it might have been if she had been in better condition.

They had to knock her our for the operation, because you have to stay very still and she would move. Though she came through the operation fine, her breathing was adversely affected by the anesthesia (apparently it can cause much more mucous, and she cannot swallow). I had to rush her back to San Diego, and after five days in a local hospital her lung infection improved enough to go back to her nursing home. Up to this point there was no change, as she was very ill and asleep almost all the time.

However, right around Thanksgiving she suddenly began to speak! Not long conversations, but short ones. She is saying a few words every single day now. The nurses at the home are in shock, as am I. This morning I asked how she was doing, and she said, "I feel fine." I told her I was going to get a Christmas tree and would she like to see it, and she said, "Yes." Her eyes are bright, and she is following us around the room. When we ask her to smile, she gives us a beautiful smile.

To some people, such things are minor. They are not to me. I prayed about this a long time, and was very worried I was doing the wrong thing. but I was not. This is not a "placebo effect," since she had no clue what was going on. She may revert, she may get even better, she may suffer a clot or migrating stent and die. However, I know this: in her case, this CCSVI created a radical change in her condition, and within weeks. I am not a skeptic anymore.

I realize there are risks with this procedure, and for many the risks may outweigh the potential reward. However, if any of your friends or family members are near death as my wife was, I truly believe you should have them examined for this vein blockage. My home email is metalteam@cox.net if you have any questions of me (checked every few days, so if I don't get back to you right away please be patient).

Thanks to the doctors in Mexico who made this possible, to this site and others like it where people can freely discuss such issues, to Dr. Zamboni/Dake and others like them, and to the Lord, who said, "Ask and it shall be given you, that your joy may be full." Merry Christmas!
User avatar
MarkHat
Newbie
 
Posts: 3
Joined: Fri Dec 10, 2010 4:00 pm

Postby ErikaSlovakia » Sat Dec 11, 2010 2:10 pm

Dear Mark and Marcy!
Thank you for nice story. I wish you the best and of course more improvements :)
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
ErikaSlovakia
Family Elder
 
Posts: 1123
Joined: Wed Jul 29, 2009 3:00 pm
Location: Slovakia, Europe

Christmas present!!!

Postby lovebug » Sat Dec 11, 2010 2:13 pm

Wow what a christmas present that you and your wife received this year! May more progress continue.... And who dare says this is just the placebo effect!!! And if this story doesn`t make you cry!!!
User avatar
lovebug
Family Elder
 
Posts: 170
Joined: Fri Jan 01, 2010 4:00 pm
Location: Canada

Re: CCSVI Success (A Christmas Miracle, Frankly)

Postby Cece » Sat Dec 11, 2010 2:29 pm

MarkHat wrote:To some people, such things are minor. They are not to me. I prayed about this a long time, and was very worried I was doing the wrong thing. but I was not. This is not a "placebo effect," since she had no clue what was going on. She may revert, she may get even better, she may suffer a clot or migrating stent and die. However, I know this: in her case, this CCSVI created a radical change in her condition, and within weeks. I am not a skeptic anymore.

So very happy for you and your wife.

You probably know this already, but if I have your ear, please consider:
* advancements have been happening in azygous diagnosis and treatment, it might be worthwhile to have that checked again by someone experienced at some point in time since nothing was treated there
* migrating stent is likely not a worry anymore, the vein has grown endothelium around it by now
* clot is a worry, particularly with a stent, particularly if she is not on anticoagulant medication; please seek doctor's care for follow-up ultrasounds and anticoagulation advice

Merry Christmas and I hope the healing continues.
Cece
Family Elder
 
Posts: 8994
Joined: Mon Jan 04, 2010 4:00 pm

Postby MarkHat » Sat Dec 11, 2010 2:44 pm

Thanks much; yes, she is on the anti-clot medication. Heading back over there in a bit.
User avatar
MarkHat
Newbie
 
Posts: 3
Joined: Fri Dec 10, 2010 4:00 pm

Thank you!

Postby poppet » Sat Dec 11, 2010 3:17 pm

First let me say how sorry I am for the years of suffering and loss you and your wife have endured. Thank you for sharing your honest and uplifting story of this wonderful Christmas miracle you have experienced. I pray too that she will continue to improve. God Bless!
User avatar
poppet
Getting to Know You...
 
Posts: 11
Joined: Sun Jan 10, 2010 4:00 pm

Postby silverbirch » Sat Dec 11, 2010 3:17 pm

What a lovely account of CCSVI and I wish you the very best

CCSVI is being put threw the awful hoops and its just getting out of hand , the powers that be need to be fair
User avatar
silverbirch
Family Elder
 
Posts: 232
Joined: Fri Mar 05, 2010 4:00 pm
Location: UK

Re: CCSVI Success (A Christmas Miracle, Frankly)

Postby prairiegirl » Sat Dec 11, 2010 4:54 pm

MarkHat wrote: She is saying a few words every single day now. The nurses at the home are in shock, as am I. This morning I asked how she was doing, and she said, "I feel fine." I told her I was going to get a Christmas tree and would she like to see it, and she said, "Yes." Her eyes are bright, and she is following us around the room. When we ask her to smile, she gives us a beautiful smile.

To some people, such things are minor. They are not to me.


What a great outcome for your wife, and for you also to see these improvements.They do not seem minor to me at all! All the best for continued healing to your wife; wish you both the very best. Thanks so much for sharing this.
User avatar
prairiegirl
Family Elder
 
Posts: 228
Joined: Fri Feb 05, 2010 4:00 pm

Amen!

Postby leetz » Sat Dec 11, 2010 5:10 pm

See how God works...he works through other's (Doctor's)!!! So happy for you and your wife!!
GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...
User avatar
leetz
Family Elder
 
Posts: 294
Joined: Tue Oct 06, 2009 3:00 pm

Postby IHateMS » Sat Dec 11, 2010 6:09 pm

wonderful :D :D
User avatar
IHateMS
Family Elder
 
Posts: 168
Joined: Sun May 17, 2009 3:00 pm

ccsvi

Postby blossom » Sat Dec 11, 2010 6:52 pm

wow!!! i'd bet most that read this are in tears as i am right now. and, i don't need to bet, i just know, that people all over the world after reading this have you and your wife in their prayers as i do and will continue to.
User avatar
blossom
Family Elder
 
Posts: 1368
Joined: Thu Dec 03, 2009 4:00 pm
Location: south western pa.

Postby thornyrose76 » Sat Dec 11, 2010 7:04 pm

Merry Christmas to you and your family. I wish you all the best! Dreams can become reality. :)
User avatar
thornyrose76
Family Elder
 
Posts: 462
Joined: Mon Nov 23, 2009 4:00 pm

Postby MarkHat » Sat Dec 11, 2010 8:26 pm

Thank you all very much. She and I have been married for 28 years now, and we were best friends for five years before that. When you lose a spouse you realize how they really are "half of you." Just being able to have her say things to me means so much.

For those interested in any other "scientific" tie-ins, she is 56; she had diabetes since the age of 9; had varicose veins; and had some dementia before she lost the ability to talk. {I had to watch what tv shows i put on. If cops were hauling the robber away, she would ask me why they were taking her to jail.} She has been on oxygen for about a year. She is at like the "top of the charts" on the ms scales. Thus, though I know some of the doctors have reported limited CCSVI therapy impact on advanced cases, if it can help her it can help someone else too.
User avatar
MarkHat
Newbie
 
Posts: 3
Joined: Fri Dec 10, 2010 4:00 pm

Postby CureIous » Sat Dec 11, 2010 9:07 pm

I don't think you could overstate in this particular case. Wishing you much more success and continuing improvements. My 4 stents are just dandy after 16 months if that's any consolation..

Absolutely floored. Your wife is very fortunate to have such a determined and loving caregiver that doesn't give up.

Much blessings to you and your family, what an incredible story. Please keep us posted okay?

Mark
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 soapdiva884 » Sun Dec 12, 2010 7:56 am

You are truly a wonderful husband! Your wife is very lucky to have you! I pray she continues to feel "fine" and that she sees even more improvements in the future. The risks you have taken are exactly the risks I would take for my bf if I was in your position. Fortunately John is able to make his own decisions and we went through the CCSVI procedure a month ago with loads of miracles ourselves! God bless you and your wife.
User avatar
soapdiva884
Family Elder
 
Posts: 167
Joined: Mon Apr 05, 2010 3:00 pm

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