This Is MS Multiple Sclerosis Knowledge & Support Community

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
My balance is still rock solid from the first procedure!

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

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.

magoo, so happy you are doing so well and a big thank you for shareng.

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

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.

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.

Are you on Blood thinners at the moment Magoo?
I really hope you feel better soon....sending you healing thoughts xx

Plavix and aspirin. Thanks.

Rhonda, I hope things settle down and you get the relief you need. I'm pulling for you.

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!

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

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.

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.

prayers and light sent to you, Rhonda...
keep us posted.