This Is MS Multiple Sclerosis Community: Knowledge & Support

I thought it was remarkable that he was willing and able to keep having procedures to deal with the complications. It must have been about one every month? But if clotting is happening, a redo is what's needed. If they hadn't cleaned it out, it would have meant allowing the jugular to totally occlude and be left that way, which is not a choice I would make if there was anything I could do about it.

He also had his other jugular and azygous ballooned and they stayed patent. To me that also says that we need both jugulars, not just one, considering that he could tell a difference in improvements when that jugular was cleared compared to when it was clotted.

I am still excited about this case. We've talked about the possibility of grafting for so long, and here it's been done, and by no less than the Mayo clinic.

I am curious, when Dr. Stone says he is experienced in vein reconstructions, how many, if any, of those vein reconstructions were jugulars, and for what indications.

as impressive as it is ......... I do hope this procedure is saved for a rainy day.

just performing this procedure .... on the leg's alone ..... would be overwhelmingly
ground breaking .

Unless they have been doing this unheralded , and under the radar ...... already.

I get a sense that may be the case ..........



Mr.Success

READ HOW THEY PREPARED THE SAPHENOUS VEIN
http://msmikejuices.blogspot.com/2011_1 ... chive.html

Dr Arata, bless his soul, left a message for Dr Stone concerning me.
Thanks Happy Poet for the suggestion.

dania, I'm very happy that Dr. Arata came through for you.
Please keep us informed. Many members of TIMS are pulling for you!

From the pictures of the surgery incisions, 7" down the neck, and the whole leg to remove the vein for the graft, this does indeed look like major surgery. I wonder if the patient was told about Radio Frequency ablation? Dr McGuckin is the only IR who has this equipment, he is well known in the IR community for this skill. Here is his case study of a RF ablation he did in 2009, after the patient developed clots, and was referred by his first IR to McGuckin:

Re-canalization of Chronically Occluded Jugular Veins Leading to Resolution of CCSVI
http://ccsvism.xoom.it/ISNVD/Other/Abst ... guckin.pdf

It is important that the occluded veins be treated with RF as early as possible, before the clots turn into an impenetrable mass. I hope that other patients who experience occlusion or clots hear about this, McGuckin has clinics around the country and travels to them.
http://www.vascularaccesscenters.com/Pu ... iency.aspx

My jugulars were stented at Stanford in 2009 and then filled with webbing. They have remained clear since McGuckin treated them Jan 2011, although I did not require RF. He has had no adverse patient events in treating CCSVI.

_________________
RRMS '96 SPMS '02 | Dual jugular vein stenosis (CCSVI) | 10/09 3 stents, 1 angioplasty. Details http://healingpowernow.com

This patient was well informed. He had been treated by Dr Arata 10 times. If RF had been a solution it would of been suggested. Sometimes you can get thru the clot and then what? If the vein keeps stenosing/collapsing something else must be done. I am in that predicament.

I think it may have been 9 venoplasty procedures by Dr. Arata and 1 by Dr. Stone before he moved on to the vein reconstruction.

According to this, Dr. Arata has the baylis RF puncture wire used for RF:
http://www.synergyhealthconcepts.com/20 ... ture-wire/

This patient's occlusions were always caught early and treated early. The problem did not seem to be with clearing the occlusion but with keeping it clear.

Cece, you hit the mark! That is exactly the problem. Keeping the vein open. So many are under the assumption that all that is need is angioplasty. Not that simple for too many of us, unfortunately.

This might be an area where big pharma could help, but I do hope they withhold the side effects, hold down the price, and hurry up!

Mike was in attendance at the CCSVI Alliance educational symposium in Las Vegas. Unfortunately, Dr. Stone was not registered for VIVA and he was unable to rearrange his schedule to attend. pwMS might be interested to know that Dr. Manish Mehta will be starting a trial in the near future to study vein reconstruction for failed PTA's

Sharon

This is marie-
Hi! I am rarely here these days but sammyjo sent me a link to this thread and I thought I'd add something re:vein replacement after I read it.

VEIN RECONSTRUCTION IN THE LIVER
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1422571/

In this one people with neck cancer had radical neck dissection and reconstruction of ONE internal jugular vein. Though most died of cancer, two lived on to 8 and 18 years with no "apparent neurological consequences" In other words, the one vein they recontraucted worked pretty well and the people seemed to get by with the one vein. I would argue those people should be evaluated with MRi for ventricular lesions typical of MS to see if 8 years of this has allowed one or two silent lesions to develop....but be that as it may it does point out that reconstruction of these veins is not unheard of.
http://onlinelibrary.wiley.com/doi/10.1 ... 00019/full

In the legs they have been working on good solutions for intractable venous insufficiency for a long time...it can be devilishly hard to treat (Dr Zamboni was a venous disease specialist before Elena ever got sick, which is why he recognized her blood flow issues as possibly venous insufficiency. But it is important to note that they have never had consistently slam-dunk great results with venous problems of the legs...it remains a frustrating and difficult medical problem that is hard to heal.)
http://www.phlebolymphology.org/2009/07 ... fficiency/

I recently saw an ad showing synthetic vein used to replace a bad saphenous vein in a patient with venous ulcer--his ulcer healed up with the synthetic vein was placed and 9 months went by. Goretex has been used for a long time as a vein replacement material but with mixed results as far as staying patent
http://www.ncbi.nlm.nih.gov/pubmed/4049199

this paper suggests real veins are better than synthetics for staying power
http://www.ncbi.nlm.nih.gov/pubmed/19125710

I hope they develop better and better techniques.

_________________
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics

Does anyone know the justification for doing the reconstruction for the cancer patients? How come the pwMS who have both jugulars occluded are not given this surgery? Two veins would be great but one is better than none.

Really great links.
Something that comes to mind is that size matters, in regards to jugulars. My right jugular is approximately three times the size of my left jugular. If the reconstructed jugular was the size of my right jugular, that might work all right on its own. If it was the size of my left jugular, that would not work so well.

There is tremendous variation in size of jugulars but when added together, they carry approximately 800 ml/min as discussed in this thread on normal jugular flow:
chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic12743.html

So the question would be how close that one reconstructed jugular came to that figure in terms of total flow.
Same question for any patient who has had a vein ligated because of phlebectasia or pulsatile tinnitus or cancer.

welcome back , Marie. TIMS was never the same since you flew the coop.

Scientific posts are alway's appreciated ..... too much bumf floating around


Anyone hear from Dr.Diana ? Another valuable TIMS contributor .



Mr.Success