My stents are fine at 1 yr

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

My stents are fine at 1 yr

Postby Rokkit » Wed Oct 13, 2010 1:03 pm

Had my one year follow-up at Stanford today. I have 3 stents, one on each side by my ears, and one just above my collarbone on the right side. There are no problems with any of them. I took plavix for 6 months and I'm on one baby aspirin daily for life.

I still have zero brain lesions. My spine hasn't been imaged in 3 years so I don't know if any have showed up there or not. I've never been diagnosed with MS. My symptoms are consistent with PPMS and I have positive CSF.

Symptoms. My fatigue and bowel function are better. Everything else is a little worse. This includes minor swallowing issues, urine retention, and various weakness, cold sensitivity and numbness issues in both legs and right hand.
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Postby Kathyj08 » Wed Oct 13, 2010 1:29 pm

That's great that the stents are doing just fine! That is so good to hear.
Sorry that you feel some symptoms are a little worse. Hopefully that comes to a halt.
I have not been diagnosed with ms either, yet was found with severe stenosis. I had the ballooning only done and have re-stenosed and am trying to figure out the next route to take.
Please keep us updated.
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Postby questor » Thu Oct 14, 2010 8:52 pm

Rokkit,
And now the question magoo asked me after my one-year follow-up: did you discuss the option of having Dr. Dake take another look via venography to see if he missed anything the first time, or if any new problems can be found?

I know it is hard to acknowledge some progression after the hopes we had a year ago, even given the improvements you have felt.

(I also know how hard it has been dealing with the slow recovery of my shoulder after the procedure last year, which has made me much more circumspect in regard to further treatment. I don't remember if shoulder issues were a problem for you.)

--Tracy
Last edited by questor on Sun Oct 17, 2010 8:52 am, edited 2 times in total.
CCSVI Procedure 9/16/2009 at Stanford
Stent in left and right IJVs
SPMS
Copaxone and Ampyra user
Botox Bladder Injections
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Postby magoo » Fri Oct 15, 2010 6:18 am

Rokkit,
Great news! I am headed to Stanford on the 25th for my check up.
Yes, I wonder if you had the option to have another venography? I only ask because I have a return of headaches which were gone shortly after treatment. I want Dake to look inside if he's allowed and if he suggests. I also have stiffness and pain in my left calf, so I wonder about MT.
Could it be that the return or worsening of symptoms could be from permanent damage that somehow was helped by treatment for a while? Maybe this is where the placebo effect comes in? The fatigue and general feeling of well-being seems to hold. Which is huge when considering our quality of life!
The MRI results are very exciting! If there were new lesions, we would be hard pressed to see CCSVI treatment as working. Since no new lesions have been found I believe this is a huge benefit! I haven't been on any DMDs for over a year. so I can't wait to see my MRI. Because the last time I took a break from DMDs for a year I had 4 new lesions.
Best of luck in the next year! Oh, and hurray for those stents!!
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby catfreak » Fri Oct 15, 2010 9:00 pm

Rokkit,

Glad to hear you had your 1 year appointment went well. I was suppose to go Oct 7th but my job ended and I had to get a new one and go to trying in Chicago for a week. I am trying to reschedule for November when my insurance goes into effect. We will see..

zero brain lesions is awesome!! I am really interested in knowing all the details.

Take care,

Cat
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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Postby Rokkit » Sun Oct 17, 2010 12:33 pm

Tracy, I never had the shoulder problem fortunately.

As for whether or not Dr Dake should go back for another look didn't really come up. He didn't see anything on the MRI that he thought needed to be addressed. He didn't really seem to know any more than he did last year honestly. Kind of disappointing but I guess to be expected without treating anyone. I tried talking about going in from the left, MT and all that but he wasn't very interested.
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Postby CRHInv » Mon Oct 18, 2010 8:30 am

Hey Rokkit!
Thanks for posting. I am so glad to hear you are well! I will go in on the 26th and see Dr. Dake on the 27th. I will post when I get home and everyone know what I learn.
Take care,
Beth
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
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