This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi all- It's been so wonderful to read all the stories of folks who've seen Dr Dake and had various stenting procedures done. Since I'm the first, Joan mentioned that several are curious about the shoulder/neck pain issue. Like many, after my 1st procedure, this was very slow to dissipate - I'd say it was completely abated by about 8 weeks. Very gradual, so if you are feeling like it's 'never' going to get better take heart. If fatigue is not an issue, Joan also mentioned several are getting relief with muscle relaxants.

OK, So I've been 'ballooned' - I always thought of a balloon as a fun object - something associated with birthday parties, cake, and political conventions - esp. the democratic ones...(ha). Procedure was very similar to the original- lot's of exploratory 'wires' and the like getting set and finding his way around. Then Dr. Dake says in his beautiful Irish tenor like voice 'a little pressure, Jeff' - this is code for "THIS IS GOING TO HURT LIKE HELL" - ha - once the balloon is in place the 'inflate' and 'deflate' it in several different areas - inflation is also very intense pain - so much for my birthday party analogy... I'm my case there was a bit of experimentation and tweaking with the size of balloon - Then the balloon is moved up and down the stent to hit the areas of colaguation and then they kind of 'scrub' it up and down -

Nausea was more minimal, but by the end I did have a bit - which continued until I hit the pillow back in LA-

Good news it that yesterday I felt close to back to 100% and today pretty much back to normal, so the recovery period is much much quicker (yeah!!)

One final thought - because of the shoulder/neck pain issues - I was concentrating during the surgery to try and keep my neck and shoulders very relaxed, which of course it counter-intuitive given what a 'natural' reaction to the head pressure and pain.

It's too soon to see if there is any slight uptick in my reaction to the better flow - it was a dramatic improvement on the left side compared to where I had been according to one of the nurses who showed me the scan on the screen post-op. It's all very subtle when my major symptom (fatigue) needs several weeks to track accurately.

Dr. Dake now has me on 10mg of coumadin daily for another month - as my IRN number was still to low testing pre-op - (I was on 7.5 daily) so it would appear my blood density might have contributed to the previous clotting on the left? - time will tell, but I'll be glad to be off the thinners in a month.

best to all-
Jeff

Thanks Jeff for the well thought out and thorough update. Sounds like it was an uncomfortable procedure, but how great it is over!

My understanding of the recheck was that it was to make sure the stents were functioning correctly and also to see that they were endothelialized. So did they answer the question as to the endothelialization? And do you have a return trip planned?

I am sure this will be individual but did they give you a tentative target to aim for with regards to being "done" with coumadin repeat visits etc?

I had not understood it was coagulation that had blocked your stent, forgive me but this makes me happy because I have a clot in my leg and I have been worried sick that my stents are clotted too, so I am glad you blazed that trail already. It is a relief to know that this is "easily" treatable. Thanks for going first!!

Thank you for taking time to report your experience too. It is kind of you to take the time to do that, it means a lot to all of us.

I'm going for recheck the 4th. fingers crossed!
marie

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I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
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http://www.ccsvibook.com Read my book published by McFarland Health topics

For those of us that live far, far away, I wonder if they can not only do the check up, but all of it in a short trip? I think I'll make sure and ask him that when I send him my next update next week.

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Hey Loobie - I'd say 'yes' and 'yes' to the recheck and any possible adjustments - I had my 2 month check up with Stanford July 6th - (monday) we had to drive back to LA that same night to get our son back into summer school- I would imagine you could do it 'all' in one visit. The only caveat is that sometimes Dr. Dake said it's takes a bit longer to get the MRV data sent to him for review. So even if all is good, you might need to plan on a 2 day trip to make sure he get's the info he needs.

And just to clarify - if all looked good on the MRV and CAT scan of the stent I would have already been off the thinners after the 2 month period. So my assumption is if you're incorporated the stents cleanly, after 2 months you can go off the coumadin and plavix.. In my case the MRV and I think CAT scan showed the clotting and narrowing on my left jug.

update:
Jeff's off coumadin! Whoo hoo! He noticed an immediate uptick in energy the past couple of days he's been off it. He was on 10mg. and felt tired by the end of the day since the increase of dosage...not the MS fatigue of the past, but just ready for bed. Now off coumadin, he's feeling even better.

Three and a half months out he's noticed improvement in fatigue, cog fog, heat intolerance, less urgent bladder, better voiding (he's able to sleep thru the night without getting up) less leg pain (just occasional now) less spasms, better mood, much more sweating.

I have noticed clarity of mind, much better color in his face, better balance, he's more here and present in his body. And his sense of humor is back.

Jeff has said that he feels his improvements are amazing...but he's also wary of coming on here because they are "anecdotal." We've talked alot about how "results may vary" and he is very conscious of not wanting to mislead others or give false hope. He was only diagnosed two years ago and was a 1.5 EDSS. He did have a long recovery with shoulder issues, but they are all resolved now.

Without a doubt, he is glad he did this procedure, and as scary as it was being the first...he knew it made sense. He just couldn't see leaving the closed jugular veins alone, and letting his blood continue to reflux into his brain. Dr. D did try to just balloon Jeff's jugs at first, but they closed right back down. Stenting was his only option...or leave the jugs alone and hope for the best.

He'll have a check up with Dr. D. next May, and will go in to see his neuro this fall and tell her all about the procedure and his results. He continues to take his copaxone (for anti-inflammatory benefit) and supplements (for anti-coagulation and anti-oxidant benefit), and is still on the modified Swank diet...it's the endothelial health program we came up with last year. He exercises and has been doing strength and balance training with our son. He will continue to do everything in his power to stay fit and active.

We'll continue to update here- but we both feel our efforts on TIMS have come to closure. I'll post my reports after Bologna, but I need a break from the day to day stuff. CCSVI is going to follow a natural course...it will either be accepted and become a standard procedure for MS, or will be discredited. Debating its merits here will not change that. I'm sorry for making TIMS controversial or less fun, but I came here to help my husband, and I have. I'll be over at Facebook- CCSVI in multiple sclerosis.

See y'all after Bologna!
cheer

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Make sure you keep me up to date in Facebook!

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http://myhopefuljourneyintoactualmsreco ... ogspot.com

Me Too!!! and thank-you so much for everything you have done Re:CCSVI. You have put it out there and raised awareness as well as made it available for those (if they choose to) have the procedure done.
If it proves to be a benefit to MS then it will open up a whole new way of looking at the disease even if there is more to the story that we don't yet know.
I hope that Jeff continues to feel better and fingers crossed for all of us in the future.

You have absolutely nothing to be sorry for.

Thank you for everything and I can't wait for your reports from Bologna. I will be one of the last he sees before Dr D goes to Bologna.

See you on facebook!!

Cat

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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.

Good luck Joan and Jeff.

I'll keep in touch on FB.

We're not at that phase yet, I'll keep trucking until a month or so after Mel's follow up.

Thanks for everything.