Mel & Jamie's ongoing Stanford experience post!

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

Postby Loobie » Wed Jul 08, 2009 5:00 am

Mark, you'll always be the odd duck!! Just kidding! Anyway, great to hear Jamie. I know you were just agonizing waiting that long. Great to hear that she wasn't the first exception. Even though we're batting 1.000, I still think I'm going to be the one. What's up with that!?

Here's to her speedy recovery. That woman has been through the wringer; twice now.
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Postby IHateMS » Wed Jul 08, 2009 5:21 am

Eventually, there will be one person who does not have an occlusion. When that happens, it does not mean the CCSVI is wrong. IMO, it means that person does not have MS.

I've seen about six or seven neuros (four locally-three said MS, one said not MS). The last two were MS experts. One was at Johns Hopkins, the other at OSU. One said not MS, the other said MS.
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Postby mrhodes40 » Wed Jul 08, 2009 6:03 am

IHMS, I am sorry for the unclear diagnosis that is hard! You said
IMO, it means that person does not have MS.


I'm glad you menitoned it because I have had that thought also. I keep thinking of that person on tysabri who got PML and they discovered after the investigation she did not have MS.

Trials are pretty careful about who they take because they want a good showing at the end so they don't want someone with neuro lupus if they think they are treating MS; it won't work. If THEY can miss it, anyone can.

I'd like to see the day when people can go in and get vein studies to see IF they have MS...wouldn't that be great? eliminate all that angst of not knowing?
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 LR1234 » Wed Jul 08, 2009 1:07 pm

I have not got an occlusion so far in my jugulars. I am sending my scans to Dr Dake for a second opinion though. One Jugular was reported larger than the other but no stenosis or blockages were seen. My problems all seem to stem from my lower back though so I want to get that tested soon...just waiting for the dopplers to be arranged
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Postby Sharon » Wed Jul 08, 2009 2:14 pm

Good news Mel and Jamie -

Sorry that Mel had a little more pain than was anticipated - Dake also had to give me a little more sedative - he said that I was too wide awake and too aware of what was going on. So now, it is time to recover (both of you). The next week is going to have its ups and downs, but soon Mel will be off the pain killers. The Coumadin and the Plavix not only cause the bruises, but they also may cause some fatigue so do not get concerned if Mel is a little tired.

We all look forward to seeing how Mel does - HyC and now stents - she has been one busy girl the past year!!

Sharon
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Postby gibbledygook » Wed Jul 08, 2009 2:47 pm

Wow 12mm and 7mm! Those are long stents! I hope she has a swift recovery but I'm still sore in the shoulders 2.5 weeks on so she'll be in quite a bit of pain for a while. Good luck with that. :)
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Postby Sharon » Wed Jul 08, 2009 2:53 pm

Gibbs wrote
but I'm still sore in the shoulders

Are you having spasms or tightening? If so, think about a muscle relaxor -- it made a world of difference for me.

Sharon
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Postby gibbledygook » Wed Jul 08, 2009 3:11 pm

Hi,

I had spasms right at the beginning but I just have stiffening especially at the end of the day. What's your muscle relaxor called?
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Postby Sharon » Wed Jul 08, 2009 3:50 pm

Gibbs -The muscle relaxor is Carisoprodol (generic for SOMA). Yesterday I was driving in from the mountains (about a four hour trip). My shoulder and neck were tight from holding the steering wheel - I decided to take half a pill - it was just enough to release the tension out of the area - I woke up this morning ready to play nine holes of golf. My shoulder feels pretty good this afternoon, so I will not take anything tonight.

Sharon
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Postby gibbledygook » Thu Jul 09, 2009 2:27 am

Thanks, Sharon.

Jamie, I lay in bed last night mistakenly imagining that Mel had a 12 CENTImeter stent put in. This really made me worry a bit as that's just a ridiculously large stent but I'm glad to reread your post and it says 12 MILLImeters!!! I can tell you that my 4 CENTImeter stents are pretty hard on the shoulders/neck/cheekbones...

Good luck with the recovery. 8)
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Postby Jamie » Thu Jul 09, 2009 10:28 am

Hahah, yes, 12cm would be most of the vein!

Mel's sleeping now, the flight home was tough - Mel can walk relatively normally still but even she needed a wheel chair service. How Jeff did all that on his own I have no bloody idea!

What a trip.

I will write a full 'blow by blow' encounter in due time.

Still batting 1.000 (I think that means - hit every ball? like a 100.00 strike rate in cricket!) for this, RR, PP, SP.

Dr. Dake said something interesting that whilst he's not seen stenosis like this in non-ms patients he has seen congenitally malformed jugs on other people, he said one difference he's noticed is that people with MS tend to have low blood pressure. He speculated that low blood pressure combined with a congenital weakness could be causing the back flow and damage.

He's just like all us in this though, noticing the damage and intellectualising as to everything else. It's good he's not a neuro because he's thinking outside the norm, just like us.
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Postby whyRwehere » Thu Jul 09, 2009 10:32 am

I was thinking it caused the low blood pressure, so that is interesting. My husband's blood pressure is VERY low.
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Postby daniel » Thu Jul 09, 2009 11:13 am

Jamie wrote:...snip...
Dr. Dake said something interesting that whilst he's not seen stenosis like this in non-ms patients he has seen congenitally malformed jugs on other people, he said one difference he's noticed is that people with MS tend to have low blood pressure. He speculated that low blood pressure combined with a congenital weakness could be causing the back flow and damage.
...snip...


It could be that people with MS tend to eat healthy and exercise more so they have lower blood pressure...?
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Postby LR1234 » Thu Jul 09, 2009 11:34 am

I have always had a low BP and very slow heart rate.
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Postby Arcee » Thu Jul 09, 2009 11:34 am

Ok, so here's hoping I don't break the hitting streak next week :wink: (I feel like I had to get that out here as it seems like the way to make sure it doesn't happen...)
Count me in the low blood pressure camp.
Jamie, do you mind saying a bit more about the trip home when you can? (Or pm if you would prefer.) If I have the surgery, I will be flying on my own, so the more prepared the better. (I think Sharon had mentioned the wheel chair service so it's on my list, but any other tips would be great.) My flight would be 3 days after surgery so that may help.
Will look forward to the blow-by-blow...
Thanks. And thanks so much for all your posting. Hope Mel is feeling better!
- Randi
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