This Is MS Multiple Sclerosis Knowledge & Support Community

Oh, Viv....I'm so happy for you! You're in my thoughts and prayers.

BadCopy....I'm glad you had such a wonderful experience in Albany. My darling man will be there on Sept. 14. Sending you good thoughts and prayers for healing and great health.

To all of you with appointment dates and to those still waiting, I pray for positive results for all of you.

For my Canadian friends, hang in there. Those with insurance (Americans) are definatlly getting booked faster than those without insurance (Canadians). I know it has to do with if the procedure is done in the hospital or in the clinic. The Albany clinic is doing their best for everyone.

I find it interesting that in the US there has been such resistance to the idea of manditory health insurance while here in Canada we have had it for decades and would never give it up. Now it seems that Americans with insurance are getting faster service. Also, the American insurance companies are covering the procedure while here in Canada, our insurance will not cover it. There has been lots of media stories about the evil American health insurance companies but they seem to be coming through for people on this one.

Bruce
-called Albany May 26 - still waiting

Bruce that sounds nice, but the US insurance companies do not pay for anything related to CCSVI as an ms treatment, however, if there is a problem with a vein it is just that a problem with a vein which is nothing new and which is covered if severe enough.

Hello Everyone,

Just to let you know my daughter went to Albany yesterday and had an MRV (we live in the NY region) followed by a consultation.

The outcome was that there was no stenosis of the jugulars and the azygos that could be seen looked fine - not sure what that means but we asked about the 'Gold standard' test which he said can be performed at a later date and we are waiting to decide where we go from here.

We made the call end of May just to let you know timing and the doctor said they had performed around 160 surgeries so far.

Dr. Mandatto was absolutely charming and caring and spent as much time as we needed. His nurse Laura was also lovely but of course we were disappointed with the outcome - strange that we actually wanted something to be wrong.

Anyway just wanted to update and best wishes to all of you who have appointments pending.

Drury

Oh, no, Drury.

The azygous cannot be fully imaged by the MRV. I am not sure why.

Dr. Sclafani has said that the value of an MRV in diagnosing CCSVI is uncertain. Dr. Zamboni didn't use it. Did they offer her a doppler ultrasound, or aren't they doing those?

May Thurner also went unchecked then?

Take care, this is a disappointment, but you still have options if you want to pursue CCSVI further.

Drury, take them up on their offer to do the venogram at a later date.

Take cusp to mean the end of one month and beginning of another. Wish I hadn't taken all the Valium (10mg) as I just slept and slept. Snored up a storm. Still feel good. Go, Albany!

With Drury's negative results I wonder how many who went to Abany required an mrv and were negative for the stenosis. It will be awful for my wife, who is severely disabled from ms, to travel there in october and come up negative with what may be an inadequate test.

Have any Canadians been treated by Dr. Mehta? If so, can you outline the costs. Any info would be great! Thanks

Hey everyone... I'm copying/pasting this from the "Dr. Mehta in Albany, NY - Thank you, Kacey!" thread: http://www.thisisms.com/ftopic-9998-255.html

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Hi Everyone,

Quick update -- sleeping is continuing to improve... enjoyed first dream in at least ten years last night. It was in full, glorious color with people actually talking! I can't remember much else about the little dream, but I have a feeling the people were surely extolling all the wonders of CCSVI

Also, Megan told me that Dr. Mehta has openings which is *fantastic news* for those who don't have a CCSVI doctor yet or for those who want a 2nd opinion from a world-class vascular surgeon.

Believe me, staying an extra day or two for all the safety benefits and the extra opportunity to talk with Dr. Mehta is time well spent. Period.

Did I say yet how wonderful Dr. Mehta and everyone in his offices are?

Dr. Mehta's phone number: 518-262-5640

~HP

HappyPoet wrote:Quick update -- sleeping is continuing to improve... enjoyed first dream in at least ten years last night.

Isn't that something - I experience something similar (improved sleep & dreaming) when I inclined my bed.

Hope you are feeling good! Thanks for all the information you are sharing about Dr. Mehta.

Oh Drury,

My heart broke reading about your daughter. The roller-coaster of emotions that is all things CCSVI, sadly takes its toll on everyone. I have a daughter who I'm sending off to college for the first time tomorrow, and I worry about her having MS/CCSVI because of certain things, so I think I know a little of how you might be feeling right now. But there is always hope...

If I may... Dr. Mehta offers Transcranial Doppler US. I believe a patient is always smart to use their right for a 2nd opinion. Since you're relatively close to Albany, why not give his office a call to set up at least a consultation, if not both a Doppler US with the consultation afterward (with possible venography/venogram after the consult)?

You've been so nice to me with your posts, and I would like to repay your kindness... hopefully the above is a start in the right direction for that, but more importantly, for your daughter.

No matter what happens, I wish you all the very best and will be thinking of you all, so please keep us updated as you feel comfortable -- I would love to know how she does on her CCSVI roller-coaster ride.

~Pam

Ditto HP Drury.

Don't let a negative test defeat you. Stay strong....the battle is still very much in play. Go for the venography at a later date or make an appointment with Dr. Mehta for a second opinion.

These doctors are learning at an incredible rate... so many twists and turns to this. There's still so much hope!

Cece wrote:

HappyPoet wrote:Quick update -- sleeping is continuing to improve... enjoyed first dream in at least ten years last night.

Isn't that something - I experience something similar (improved sleep & dreaming) when I inclined my bed.

Inclined bed therapy is starting to make sense to me....when you are supine your IJV's are supposed to be open and draining blood. In my case, and I am sure it's also true in many other "MS" cases, the IJV's are always in stenosis and never open (whether supine or erect). Inclined bed therapy mimics the posture dynamics of being erect where the return blood flow is via the external jugular veins and vertebrate veins-normally the IJV collapses when you are standing up.

That's why the body develops collateral veins in the attempt to create a secondary, substitute blood drainage system for the compromised IJV's. The main problem is that these replacement veins are so irregular and inefficient in drainage that blood reflux and back pressure differentials are created.

Inclined bed therapy thus can help treat "MS" symptoms but can not cure the underlying cause, which are vascular disorders of the venous system.

I wonder, what is the best angle of inclination for the bed? I am guessing that the closest to being erect would be the most effective....how much did you raise your bed?

Donnchadh

I was treated at Albany today!

Some numbers for you:

They will have done 178 total at the end of this month.

They do up to 4 each day - 2 at each location.

Waiting list is over 700.

The wait seems long, but it really goes quickly at the end!

Good luck to all! I hope your day comes soon!

A/C