Magoo/Rhonda needed a second treatment!

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

Postby magoo » Sat Apr 30, 2011 4:50 am

I'll let you know about the MT when I hear back.
Z, yes I am still wearing high heels!!!! As often as I can :D
My balance is still rock solid from the first procedure!
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
User avatar
magoo
Family Elder
 
Posts: 557
Joined: Thu Sep 10, 2009 3:00 pm
Location: Charlotte, NC

Advertisement

Postby ThisIsMA » Sat Apr 30, 2011 8:21 am

Hi Magoo,

Does Dr. Maguckan use IVUS? I'm asking because if I get up the money and courage to have the procedure, one of his clinics is close to where I live. It sounds like he clearly IS able to find vein problems!!!

Congratulations!

Mary Ann
DX 6-09 RRMS
User avatar
ThisIsMA
Family Elder
 
Posts: 152
Joined: Sat Feb 13, 2010 4:00 pm
Location: USA

Postby MegansMom » Sat Apr 30, 2011 8:55 am

Hello Rhonda,

I think I remember you from the patient testimonials on www.CCSVI.org right?

I am happy for you to be able to get retested and hopefully this "repair" will last for a good long time.

My theory is that Endothelin1 ( a polypeptide) that is made by the endothelium is over secreted due to the vein anomalies.
E1 production is triggered by hypoxia, hypoglycemia and disturbed sheer stress ( turbulence)- this sounds like CCSVI TO ME.
E1 is one of the strongest vasoconstrictors known. It can cause fibrosity ( stiffening) and hypertrophy (thickening) which re-models the vessel walls. Endothelin1 is found to be hundreds times higher than normal in pwMS per a study from 2001. This may be due to CCSVI.



I don't know how long E1 stays in the body. And if the cerebral hypoxia, hypoglycemia and sheer stress are eliminated ( by venoplasty) does the bodystill continue to make too much E1?and for how long ?

Can driving up your NO (nitric oxide) level -(a potent vasorelaxor) can we
drive the E1 level down to normal ? Exercise drives the NO level up in a healthy way. So maybe all patients need exercise programs to enhance this?

May there are safe drugs to lower E1 or ways to lower it that will improve the vein repairs in the future.

This just reinforces the need for research dollars in CCSVI RESEARCH.

Thanks for being one of the early pioneers.
Cat (Catherine Somerville on FB)
MegansMom
My 35 yo daughter is newly dx 8/19/10 (had 12 symptoms)
Dx with Type A CCSVI- 1 IJV & double "candy wrapper" appearance of her Azygos
Venoplasty done Sept 21, 2010
Doing extremely well-
User avatar
MegansMom
Family Elder
 
Posts: 200
Joined: Sun Aug 22, 2010 3:00 pm
Location: Central FL ( near Ocala)

ccsvi

Postby blossom » Sat Apr 30, 2011 4:29 pm

magoo, so happy you are doing so well and a big thank you for shareng.
User avatar
blossom
Family Elder
 
Posts: 1370
Joined: Thu Dec 03, 2009 4:00 pm
Location: south western pa.

What Happened ???

Postby MarkW » Sun May 01, 2011 4:56 am

Hello Rhonda,

Great information, any chance of getting your story published ??

Your experiences suggest we really do not know what is happening to our MS symptoms when we have veins de-stenosed. Did you have great improvements from just having a few veins ?? Or have the other vein problems occurred since your first procedure ?? I am not expecting you or anyone to give definitive answers if any answers at all.

I think the only way to find out would be to do a full diagnosis (catheter venogram and IVUS) in all possible veins. Treat all veins problems, both valves and veins. Then wait 6 or 12 months and repeat the process and keep repeating the diagnosis and treatment until no problems are found on later diagnoses.

This is called a longitudinal study but the ethics of repeated invasive testing would be 'interesting'.

You were a pioneer in early treatment of CCSVI and it seems there is much more to learn from your experiences. I feel there are so many unknowns at this stage, I would advise that you avoid more stents unless they are being fitted by a world expert like Prof Dake.

Many thanks for continuing to post,

Very best wishes,

MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
User avatar
MarkW
Family Elder
 
Posts: 1151
Joined: Thu Oct 19, 2006 3:00 pm
Location: Oxfordshire, England

Postby bluesky63 » Sun May 01, 2011 8:35 am

You were one of personal heroes from the beginning. :-) The words you took the time to write to me made such a difference. I have been thinking of you and hoping for the very best, for you and for your children, and I am so happy to hear your positive update. Every good day we have with our children, every precious memory, is golden. :-)
User avatar
bluesky63
Family Elder
 
Posts: 441
Joined: Mon Apr 18, 2005 3:00 pm

Postby magoo » Tue May 03, 2011 2:31 pm

Well, I am not doing so well this time. I have been experiencing new pain and pressure. I was well aware that with angio the restenosis probability was high, and I did have a lot of angio this time. I have not gotten the response to my problems I had hoped I would have. I am waiting in limbo for someone to order an MRV.
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
User avatar
magoo
Family Elder
 
Posts: 557
Joined: Thu Sep 10, 2009 3:00 pm
Location: Charlotte, NC

Postby LR1234 » Tue May 03, 2011 2:42 pm

Are you on Blood thinners at the moment Magoo?
I really hope you feel better soon....sending you healing thoughts xx
LR1234
Family Elder
 
Posts: 1505
Joined: Wed Feb 11, 2009 4:00 pm
Location: California

Postby magoo » Tue May 03, 2011 2:46 pm

Plavix and aspirin. Thanks.
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
User avatar
magoo
Family Elder
 
Posts: 557
Joined: Thu Sep 10, 2009 3:00 pm
Location: Charlotte, NC

Postby bestadmom » Tue May 03, 2011 3:19 pm

Rhonda, I hope things settle down and you get the relief you need. I'm pulling for you.
User avatar
bestadmom
Family Elder
 
Posts: 722
Joined: Mon May 18, 2009 3:00 pm
Location: CT

:)

Postby leetz » Tue May 03, 2011 11:08 pm

many blessing's...go month by month with symptom improvent (that is what I was toold to do) rather than day by day...please continue to fill us in! Feel better!

God Bless you!
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 cheerleader » Wed May 04, 2011 8:59 am

Rhonda----
The new pain may be because the difference from being upright with just the vertebrals and lying down, with wide open jugulars--is creating a cerebral spinal fluid uptake change....positional changes.

Jeff had bad headaches for a couple months last year, and they were like the lumbar puncture headaches (positional), we discussed this with Dr. Dake....he took a special medication that gave relief--Midrin-isometh-D-Chloralphenz...and he would lie down and hydrate. Pressure headaches went away within minutes. Eventually, the pressure changes evened out, no more headaches now. But it's scary. It doesn't necessarily mean restenosis, it could be CSF changes causing pain. See if lying down, hydration and headache meds help.

I hope you get some answers and feel relief soon.
hang in there---
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
User avatar
cheerleader
Family Elder
 
Posts: 5044
Joined: Mon Sep 10, 2007 3:00 pm
Location: southern California

ccsvi

Postby blossom » Wed May 04, 2011 10:41 am

to me you are one of the poster children for ccsvi. following your success is so uplifting. cheerleader's input makes sence "as always" so hang in there and be well.
User avatar
blossom
Family Elder
 
Posts: 1370
Joined: Thu Dec 03, 2009 4:00 pm
Location: south western pa.

Postby magoo » Wed May 04, 2011 11:06 am

Thanks guys. The new pain is in my chest and back and under my left shoulder blade. I'm hoping this is just inflammation and levels adjusting. Had a CT with contrast and it didn't show any blockage. I haven't talked to my doctors yet, but if they are satisfied, then I will just take pain meds and rest.
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
User avatar
magoo
Family Elder
 
Posts: 557
Joined: Thu Sep 10, 2009 3:00 pm
Location: Charlotte, NC

Postby cheerleader » Wed May 04, 2011 12:36 pm

prayers and light sent to you, Rhonda...
keep us posted.
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
User avatar
cheerleader
Family Elder
 
Posts: 5044
Joined: Mon Sep 10, 2007 3:00 pm
Location: southern California

PreviousNext

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