Rokkit goes to Stanford

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

Postby Rokkit » Tue Oct 06, 2009 7:39 pm

Three stents. Two upper one lower. Everything went well but head is really hurting. Will post more in a day or two.
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Postby cheerleader » Tue Oct 06, 2009 7:44 pm

Rokkit wrote:Three stents. Two upper one lower. Everything went well but head is really hurting. Will post more in a day or two.


take whatever meds you can- Jeff could only use tylenol due to nausea, but that pressure change is ridiculous, and will hurt like hell for a couple days. hang in there, rokkit. Better days,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby CureIous » Tue Oct 06, 2009 8:07 pm

Wow 3 stents, ow. You'll feel so much better in the morning. Keep us informed as soon as you can!
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby Needled » Wed Oct 07, 2009 5:49 am

Sending thoughts and prayers for a quick recovery.
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Postby mrhodes40 » Wed Oct 07, 2009 6:53 am

Cheer has it, It is bad those first few days and it does go away ...be smart and do take the drugs you were given and rest and sleep.... for me at about a week I was a lot better...though my neck hurt for longer than that overall I felt pretty fine.
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
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Postby Loobie » Wed Oct 07, 2009 7:12 am

Hells yes! It does hurt for a few, congrats on being done, "let it flow, let it flow. Let it blossom let it flow"! A little Clapton lyrics pertinent to CCSVI!
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Postby questor » Wed Oct 07, 2009 8:53 am

mrhodes40 wrote:Cheer has it, It is bad those first few days and it does go away ...be smart and do take the drugs you were given and rest and sleep.... for me at about a week I was a lot better...though my neck hurt for longer than that overall I felt pretty fine.


Yes, take full advantage of the prescribed pain killers. I left the hospital on percoset, after finally learning that I could only keep it down if I took it on a full stomach (the nausea eventually went away in my case). Sleep is probably your best healer right now, and it's hard to sleep if you are in pain.

When the percoset ran out, my local GP prescribed Norco (Vicodin) that I used for a little more than a week.

I'm starting my 4th week post-op now, and off all prescribed pain killers, I'm still using extra strength tylenol at night to sleep.

Better days are coming...
CCSVI Procedure 9/16/2009 at Stanford
Stent in left and right IJVs
SPMS
Copaxone
Former Ampyra User
Regular Botox Bladder Injections
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Postby Arcee » Wed Oct 07, 2009 11:08 am

Hope you are feeling as well as possible. I only had one stent and was off the percoset and other painkillers after a few days. I do hope your recovery is as simple and quick and painless as possible.
diagnosed RR in spring '04
1 stent placed in left jugular vein 7/15/09
on and off Copaxone
allergric to interferons and Tysabri
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Postby Rokkit » Thu Oct 08, 2009 8:43 am

Better today. Heading to airport.
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Postby catfreak » Thu Oct 08, 2009 8:51 am

Rokkit

Have a safe trip and get some rest.

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 Sharon » Thu Oct 08, 2009 2:29 pm

How interesting! --- Did Dake find any lesions on your MRI? It will be interesting to see if longterm the OCB bands go away. I believe you are the second person Dake has treated that had not been clinically diagnosed with MS - my daughter was the first. She is still holding back going to a neuro - probably will wait to see what happens at her follow-up. She kind of feels "Is there really a need for the MS diagnosis now that I have been treated?" Will you go back to your neuro for the diagnosis?

Get some rest -

Sharon
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Postby whyRwehere » Thu Oct 08, 2009 10:18 pm

Sharon, I would like to know more about your daughter...symptoms before and how she is doing now?
Questor....nice picture/avatar. Did you do it?

Rokkit: Get well soon, and were they filming you? Did you get interviewed?
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Postby CureIous » Thu Oct 08, 2009 11:40 pm

Sharon wrote:How interesting! --- Did Dake find any lesions on your MRI? It will be interesting to see if longterm the OCB bands go away. I believe you are the second person Dake has treated that had not been clinically diagnosed with MS - my daughter was the first. She is still holding back going to a neuro - probably will wait to see what happens at her follow-up. She kind of feels "Is there really a need for the MS diagnosis now that I have been treated?" Will you go back to your neuro for the diagnosis?

Get some rest -

Sharon


As far as I'm concerned, people like your daughter and Rokkit are what it's all about, early intervention. Might stop it in it's tracks, might not, but one heck of a good start! I would be very interested in the OCB's too longterm. I was told they in 2004, that they are positive once and that's that, you are positive for life. Maybe that's just because they have a constant source due to CCSVI?

Mark.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby Rokkit » Fri Oct 09, 2009 9:33 am

Thanks to all for the good thoughts, prayers and well wishes. Very much appreciated. I am home. Tylenol seems to knock most of the pain out when needed, so I think I'm doing stellar. I'm just laying around being slow and sluggish.

Due to my lack of diagnosis, I wasn't going to be surprised if this didn't apply to me. There are still no MS lesions on my MRI. At least not in my brain, not sure how much they looked at my spine. I figured even if I had occlusion, I wouldn't go ahead with the procedure at this time. Plenty of time to wait and see. But when my wife and I were sitting there looking at pictures of my jugulars, it all changed. They were bad. They went down to almost nothing on both sides. I think it was Mark who posted pics of his with the occlusion just at the ears, and all the collaterals. That's exactly how mine looked on both sides. Lots of collaterals. Dr Dake said my occlusions leaned toward being more severe than most he's seen, which seemed odd given my light symptoms. He would have expected all the heat sensitivity and fatigue issues which I don't have.

When we talked on the phone origianlly, Dr Dake had said in my case the threshold would need to be higher and I definitely agreed. It appeared I exceeded the threshold. His vote was to go ahead and so was my wife's so I thought what the heck. I feel like the real risk in all this is you might have stents the rest of your life that do you no good and require some measure of maintenance along the way. I decided the potential upside outweighed that. Afterwards Dr Dake said he was glad we went ahead because the pressure gradient was more severe than he expected.

Yes I am very interested to see if the OCB go away at some point. It seems possible. It's never happened but as Mark said, CCSVI has never been addressed either. I am very wary of things that seem to good to be true, but it is fun to think about the possibility of ten years from now having no OCB and still no MRI lesions. Although at this point I wouldn't be surprised if SWI told an altogether different story of my brain.

Whether or not to go back to a neurologist is a good question. My last one said if it's not MS I don't know what it is and I'll just follow you and see what happens. If it is MS, to me it's obviously progressive MS, so going to a neurologist at this point will result in one of two possible outcomes: do nothing or do nothing. I think what I would like to do is wait for a neurologist to come on board who is working with Dake and Zamboni and start there.
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Postby radeck » Fri Oct 09, 2009 9:43 am

Thank you Rokkit for this very informative update! On the oligoclonal bands, I wonder if they go away in stroke patients after some time? After all, what we seem to be looking at in the case of CCSVI/MS is just a slow stroke...

We're looking forward to hear updates on how your symptoms may be affected in the coming weeks and months.
Last edited by radeck on Fri Oct 09, 2009 12:41 pm, edited 1 time in total.
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