mtf up-date!

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

mtf up-date!

Postby mtf » Thu Sep 15, 2011 11:15 am

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?
User avatar
mtf
Family Elder
 
Posts: 116
Joined: Mon May 09, 2005 3:00 pm
Location: Lisbon

Advertisement

Re: mtf up-date!

Postby Cece » Thu Sep 15, 2011 11:46 am

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?
Cece
Family Elder
 
Posts: 8957
Joined: Mon Jan 04, 2010 4:00 pm

Re: mtf up-date!

Postby dania » Thu Sep 15, 2011 11:56 am

mtf ask your doctor if the Baylis PowerWire RF Guidewire might work in your case.
http://www.baylismedical.com/Images/PDF ... erWire.pdf
User avatar
dania
Family Elder
 
Posts: 1083
Joined: Wed May 12, 2010 3:00 pm
Location: St Lazare Quebec

Re: mtf up-date!

Postby mtf » Thu Sep 15, 2011 1:03 pm

Thanks Cece and Dania, my Doc just arrived from Germany, at the CIRSE congress.
And yes, I'm paying for it....
User avatar
mtf
Family Elder
 
Posts: 116
Joined: Mon May 09, 2005 3:00 pm
Location: Lisbon

Re: mtf up-date!

Postby civickiller » Thu Sep 15, 2011 3:58 pm

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
User avatar
civickiller
Family Elder
 
Posts: 544
Joined: Thu Feb 04, 2010 4:00 pm
Location: Hawaii

Re: mtf up-date!

Postby Cece » Fri Sep 16, 2011 6:19 am

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.
Cece
Family Elder
 
Posts: 8957
Joined: Mon Jan 04, 2010 4:00 pm

Re: mtf up-date!

Postby mtf » Fri Sep 16, 2011 10:28 am

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.
User avatar
mtf
Family Elder
 
Posts: 116
Joined: Mon May 09, 2005 3:00 pm
Location: Lisbon

Re: mtf up-date!

Postby dania » Fri Sep 16, 2011 10:56 am

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.
User avatar
dania
Family Elder
 
Posts: 1083
Joined: Wed May 12, 2010 3:00 pm
Location: St Lazare Quebec

Re: mtf up-date!

Postby Cece » Fri Sep 16, 2011 1:32 pm

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.
Cece
Family Elder
 
Posts: 8957
Joined: Mon Jan 04, 2010 4:00 pm

Re: mtf up-date!

Postby dania » Fri Sep 16, 2011 4:43 pm

    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.
    User avatar
    dania
    Family Elder
     
    Posts: 1083
    Joined: Wed May 12, 2010 3:00 pm
    Location: St Lazare Quebec

    Re: mtf up-date!

    Postby cathyb » Fri Sep 16, 2011 7:42 pm

    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.
    User avatar
    cathyb
    Family Member
     
    Posts: 63
    Joined: Tue Dec 29, 2009 4:00 pm

    Re: mtf up-date!

    Postby dania » Fri Sep 16, 2011 8:20 pm

    cathyb wrote: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.
    User avatar
    dania
    Family Elder
     
    Posts: 1083
    Joined: Wed May 12, 2010 3:00 pm
    Location: St Lazare Quebec

    Re: mtf up-date!

    Postby pklittle » Fri Sep 16, 2011 8:25 pm

    Cece wrote:
    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.
    User avatar
    pklittle
    Family Elder
     
    Posts: 341
    Joined: Sun Mar 07, 2010 4:00 pm

    Re: mtf up-date!

    Postby civickiller » Fri Sep 16, 2011 9:07 pm

    uprightdoc wrote: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?
    User avatar
    civickiller
    Family Elder
     
    Posts: 544
    Joined: Thu Feb 04, 2010 4:00 pm
    Location: Hawaii

    Re: mtf up-date!

    Postby mtf » Sat Sep 17, 2011 7:42 am

    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.
    User avatar
    mtf
    Family Elder
     
    Posts: 116
    Joined: Mon May 09, 2005 3:00 pm
    Location: Lisbon

    Next

    Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

     


    • Related topics
      Replies
      Views
      Last post

    Who is online

    Users browsing this forum: No registered users