mtf up-date!

[mtf]

Well, the results of my Doppler Ultrasound: left jugular almost closed (with clots) and right one still working. While we (prof. and me) are waiting for the MRI results, we are thinking what to do next. 5th procedure?

[Cece]

I am sorry to hear this. Clots.... some possible approaches could be getting put on coumadin or pradaxa or some anticoagulant to stop further clotting and see if the body could clear the clots on its own; manual removal of the clots during another procedure; ignoring and risking the loss of the vein if the clotting worsens; thrombolysis drugs, which are not typically used in these veins and have potential bad effects including excessive bleeding.

If it's a fifth procedure, it's to deal with complications, which may mean it's no longer elective in the same way that the first procedure was. I remember someone saying they'd gotten on the merry-go-round and wanted to get off; this was after 3 or 4 procedures, I think, but all to deal with the complications of other procedures. Not everyone gets complications but it is hard on those who do.

Are you paying out-of-pocket for CCSVI procedures?

[dania]

mtf ask your doctor if the Baylis PowerWire RF Guidewire might work in your case.
http://www.baylismedical.com/Images/PDF ... erWire.pdf

[mtf]

Thanks Cece and Dania, my Doc just arrived from Germany, at the CIRSE congress.
And yes, I'm paying for it....

[civickiller]

try go to a upper cervical care dr. and get tested for an atlas misalignment, since the procedure isnt working for you, whats it hurt to try this and you may feels the same, hopefully more, of the benefits i felt

[Cece]

It's not that the procedure didn't work (and alternatives like UCC are needed), it's that there's been a complication post-procedure with the clotting. This is worse than not getting any results, because his jugular is in jeopardy.

It's worse too to be paying out of pocket because that complicates what might be an easier decision if it were covered.

Let us know what your doctor thinks can be done. Time might be of the essence too...I remember hearing from people whose jugulars were almost closed when tested but were fully closed by the time a procedure was arranged.

For myself, I experienced what it was like to have my bigger jugular open but my little jugular restenosed. When the second procedure opened my little jugular back up, there were new improvements in cogfog and a return of improvements in numbness and vision. Both jugulars are important, in my case, and maybe in everyone's.

[mtf]

Quite right. Money is now a big issue. My jugular is surely in jeopardy. My big question is to do again the procedure or not, it seems that my jugulars close faster then before.

[dania]

That happened to me too. My first time I got the most improvements. Very little with the second and now they are all gone and I am so much worse than before I started this journey. All 3 veins 100% blocked.That should be enough proof that block/narrowed veins cause symptoms/disabilities. Those of us that now have less blood flow than before having the procedure have seen our disabilities progress and very rapidly.
When Zamboni's discovery was first made public it sounded like such as easy fix. We now know there is much more to it than simple angioplasty. The valves seem to be involved and I hope more will come out in the very, very near future, so all of us can be fixed for once and for all.

[Cece]

Is there any reason why you are clotting? Was it while on an anticoagulant? Have you been tested for any clotting disorders, like Leiden V? Are there any stents involved? Are you on an anticoagulant right now, even while waiting for MRI results and doctor's travel and all that? (please do not consider this medical advice, I am not a doctor.) Were any of the previous procedures to deal with clotting complications? Has your IR consulted with any other IRs or with Dr. Zamboni about your case?

I can't take jugulars in jeopardy, it makes me cringe. I am convinced of the importance of these veins. You've been a TiMSer a long time too. Hate to see this happening.

[dania]

Developing blood clots seems to be a risk when performing angioplasty in arteries. I can only imagine that it poses a more common problem in veins, as they are much smaller.

http://www.radiologyinfo.org/en/info.cfm?pg=angioplasty
Risks
Major complications following angioplasty are uncommon. However, inserting the catheter can lead to injury of the artery. The balloon also poses a risk of blood clots or tearing the artery.

[cathyb]

Hi. I got the procedure a month ago. Incredible improvements that remain with me. BUT, today I found out my left IJV clotted and has formed a collateral to avoid the clot (I was absolutely shocked by the news). Are clots always the end of the world? PLEASE tell me NO! (first procedure), and I really hope I'm not hijacking this thread, although I suspect I am. I guess what I want to know is, what are the options when it comes to clotting? I feel terribly unsure about what to do about this, or even if there is anything TO do.

[dania]

Hi. I got the procedure a month ago. Incredible improvements that remain with me. BUT, today I found out my left IJV clotted and has formed a collateral to avoid the clot (I was absolutely shocked by the news). Are clots always the end of the world? PLEASE tell me NO! (first procedure), and I really hope I'm not hijacking this thread, although I suspect I am. I guess what I want to know is, what are the options when it comes to clotting? I feel terribly unsure about what to do about this, or even if there is anything TO do.

I developed a clot and I returned to the doctor (cardiologist) that did the procedure and he went back in and cut up the clot.

[pklittle]

If it's a fifth procedure, it's to deal with complications, which may mean it's no longer elective in the same way that the first procedure was. I remember someone saying they'd gotten on the merry-go-round and wanted to get off; this was after 3 or 4 procedures, I think, but all to deal with the complications of other procedures. Not everyone gets complications but it is hard on those who do.

Cece, that was me making that comment way back on 9/26/2010 in the non-improvement thread.
"Someone stop this merry-go-round. I wanna get off." after just one procedure.

[civickiller]

The latest MRI studies show that specific upper cervical effects both blood and CSF flow in the brain and cord.

This why I think UCC will greatly improve the success rate of ccsvi surgery alot if the surgery is still needed after UCC holds its correction

HP saw a notable increase in CSF flow as stated by the Dr. doing the trial hp was in

cold feet is/was associated with ccsvi, after a ucc adjustment, i now have warm feet. Blood flow or nerves?

[mtf]

Well, I do have stents and my Doc. is in contact with Dr. Dake. As far as I know I don't have any problems with clots disorders.

Finding a good UCC Doc. isn't easy (hear in Lisbon). That's an option, but money to do all ... I'l have to think about.