Mayo Clinic Vein Reconstruction Surgery for CCSVI !!

[Cece]

http://msmikejuices.blogspot.com/2011_0 ... chive.html

I just went through a surgery in which 4 world class Mayo Clinic surgeons worked on me, 2 on the leg and 2 on the neck, for 4 1/2 hours. They removed the Saphenous vein from my left leg, fileted it and reconfigured it, then popped it back into my neck, somehow managing to not cut any other nerves, arteries, or just cutting my whole head off.

Kathy and Jake were in the room and I soon learned the procedure was the "easier" of the two, meaning they were happy enough with the subclavean vein to not have to crack open my chest and run the new line into the SVC by my heart. I was prepared for that, but as I mentioned before, I was pretty relieved we didn't have to do that.

Wow!! This was done two months ago. He had originally been treated for CCSVI, then had stents that clotted and stents within stents that clotted, then had this venous reconstruction done.

Then Dr. Stone and I turned to another topic...namely the Mayo Clinic becoming more of a leader in the CCSVI studies. Dr. Stone told me that although he's done hundreds of vein reconstructions before for patients and it's a well established surgery, this was his first known case for Mayo Clinic performing it for the purpose of improving MS symptoms. He was genuinely curious and deep in thought, perhaps even taken aback by the improvements I was reporting in just 11 days since the surgery.

This is very big news!
It was done at the Mayo Clinic in Phoenix, AZ.

[HappyPoet]

I'm so happy for him! What an ordeal he was going through. His story gives hope for all the others whose IJVs have restenosed. Way to go, Mayo! I bet the Mayo's phones will start ringing a lot tomorrow with this posting at TIMS.

Cece, you are so good at finding information and stories about CCSVI -- thanks!!

[HappyPoet]

They agreed to do my procedure because I had clearly demonstrated relief of my symptoms from all the other procedures, even if only for a day prior to a reclog. This is the first I've heard of this type of procedure being done for the purpose of improving an MS patient symptoms, instead of calling it treatment for CCSVI.

Cece, do you think the title of this thread should be "Mayo Clinic Vein Reconstruction Surgery for MS" because of the distinction noted above? I wonder if this distinction will be important regarding eventually convincing/forcing Medicare and private insurance companies to pay for venous procedures to help improve symptoms in MS. Your thoughts?

[1eye]

I agree this is potentially a real breakthrough, by very reputable surgeons. It might not be so easy to get it under medicare. I wonder if they could use an IVUS to locate useable leg valves, and put it in upside-down so they could re-use them? They might poke around inside the vein after it was removed from the leg, and before using it in the neck, suspended by some sort of salt water solution. But they would be the ones to think about anything like that.

It sounds great. I thank them. I wish the patient the best.

[Cece]

He described what they did to the saphenous vein after it was removed. There was some sort of spiral twisting of the vein against a metal pole to make the vein larger? I am not sure that can be done if the vein had valves.

HappyPoet, I could change the title if you like, but I can't see how it wouldn't be surgery for CCSVI as well as MS. If the CCSVI was not present, there would be no need to reconstruct the jugular.

I liked what 1eye said about these being very reputable surgeons.

[HappyPoet]

HappyPoet, I could change the title if you like, but I can't see how it wouldn't be surgery for CCSVI as well as MS. If the CCSVI was not present, there would be no need to reconstruct the jugular

No, no need to change the title -- I guess I said that as a way to discuss the topic--I'm always on the lookout for ways to try to change Medicare's and private insurance carrier's policies for those who need those policies changed. The doctors were very insistent that they were treating MS, not CCSVI--I wonder why.

[dania]

This gives many of us that now have blockages after CCSVI angioplasty HOPE!
Thanks Cece for the posting. It so appreciated.

[Cece]

We all need those policies changed. When CCSVI treatment works, it really works, and what a lifesaver that is.

One of the things that Mike repeats in his blog is that the reason they chose him for the vein graft is because his MS symptoms responded to each of his venoplasties. He kept getting better, then getting worse when the vein closed up. He had something like nine or ten venoplasties, because he kept clotting. (I don't know if he reads or posts at TiMS, but he is very welcome to join us here on this thread!) This fits in with the idea that they were treating him for his MS, because the symptoms that responded were MS symptoms.

Dania, yes, hope!! I can't believe we didn't hear about it until two months after the fact, too. But that means the vein stayed viable for two months. I wonder too if they've done anyone else in those two months? He mentions that they're vein reconstruction experts. So I would hope they are good at what they do and the veins have a good chance of taking.

One thing that I couldn't tell from the blog was how big of a section of the vein needed to be grafted? I know some people have veins that clotted all the way up, while others are only occluded down at the area of the valves, and others have the high up occlusions, especially from high up stents. Ok, I am excited if this is a possibility for people! We need to look at the possible risks or dangers too from such a surgery.

edited to add: his last post is two weeks ago, I hope everything is still going ok.

[MrSuccess]

amazing story . Let's hope these fine doctors get invited to the next CCSVI gathering and share their experiences with our CCSVI pioneer medical professionals.

Someone care to post when and where this is to take place ?


Mr. Success

[ozarkcanoer]

I also have two occluded stents. It's nice to know that this reconstruction surgery can be done.

ozarkcanoer

[CD]

I discussed this with my IR during one of our conversations about future events, like drug eluding stents, and reconstruction. He said if the blockage was too high up, with or without stents, they have to cut some of your skull open to attach the new vein. If it is down low then your chest may need to be opened. It is major surgery. Much more than just Angioplasty.

Also he thought that the new jugular vein would not have much flow, like an artery does, so it might close up.
My Vascular surgeon said, do I mean a shunt? I said no, a new vein placed where the occluded one would be.

1eye is right the valves in the leg are facing upward on half of them, and the ones in the jugular are facing downward, so they would have to be inverted if used in the jugs.

As to wrapping the leg vein around a rod to enlarge it prior doesn't make sense to me, but hey what do I know? Perhaps, insert it with a stiff rod still inside a removed leg vein, would help because mesh stents occluded and covered ones migrate.

It really would be like a plumbing job.
CD

Has this story been confirmed?

[dania]

Yes. I have been in touch with the man who had it done.

[CD]

Yes. I have been in touch with the man who had it done.

Thank you for the quick reply dania.

I wish him all the best with his new surgery and prayers for great improvements in his MS.
I can imagine what this procedure would cost at Mayo.
CD

[dania]

I asked him that. His insurance paid for it. I plan to call the clinic tomorrow and find out.

[HappyPoet]

I asked him that. His insurance paid for it. I plan to call the clinic tomorrow and find out.

Wishing you the best of luck.