thirtysomething

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

thirtysomething

Postby Sport » Mon Sep 28, 2009 10:02 am

I just returned home last night from Stanford last night and seeing the man. I asked what "number" I was, and he said that he thought that it was about 34 or 35. I thought that he had treated more people by now.

I had the procedure performed on Fri. Dr. Dake said that my case was somewhat atypical, and maybe because that's because he doesn't see that many PPMS patients. I was dx less than four years ago, and have progressed to an EDSS of 6.5 in that time. Gosh, I hope the EDSS scale is logarithmic otherwise I'll be dead in about another 3 years. . .

Anyway, he was surprised by the fact the he could count all of my lesions on less than one hand, and that my symptoms are entirely related to walking and gait. I don't suffer from exhaustion, heat sensitivity, brain fog, and all those other "pesky" symptoms. He also was surprised by the absolute pressure numbers in my veins (not the pressure gradient or the numbers before and after stenting). He said that they were about 3 - 4x what he has seen in the other MS patients. He said that it wasn't high enough to be concerned about heart problems, but that it was definitely unique.

My left jugular was completely occluded and he put two stents in. My right was only partially obstructed, maybe 50 - 60%. I think he struggled over whether to do anything on the right side or not. He ended up putting one on the right side just for good measure. He found nothing in the azygos.

Recovery has been fairly easy so far (knock on wood). I am off the pain meds. The back of my head and neck are very sore and stiff. It feels like a bad case of whip lash. All in all, certainly very tolerable though.

I think the hardest part of the recovery will be the two months sans alcohol. :(
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Re: thirtysomething

Postby whyRwehere » Mon Sep 28, 2009 10:27 am

Sport wrote:I think the hardest part of the recovery will be the two months sans alcohol. :(


I don't know...I hardly ever drink since my husband gave it up (he avoids yeast), and it isn't so bad....
Good for you, for getting done...hope you will heal smoothly.
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Postby Loobie » Mon Sep 28, 2009 10:52 am

Swtich to the gange! Glad to hear the procedure went well. Whiplash is a good analogy. I've had a touch of that, and you're right, that lower-base of skull pain definitely feels like that.
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Re: thirtysomething

Postby cheerleader » Mon Sep 28, 2009 10:54 am

Sport wrote:
Anyway, he was surprised by the fact the he could count all of my lesions on less than one hand, and that my symptoms are entirely related to walking and gait. I don't suffer from exhaustion, heat sensitivity, brain fog, and all those other "pesky" symptoms. He also was surprised by the absolute pressure numbers in my veins (not the pressure gradient or the numbers before and after stenting). He said that they were about 3 - 4x what he has seen in the other MS patients. He said that it wasn't high enough to be concerned about heart problems, but that it was definitely unique.

My left jugular was completely occluded and he put two stents in. My right was only partially obstructed, maybe 50 - 60%. I think he struggled over whether to do anything on the right side or not. He ended up putting one on the right side just for good measure. He found nothing in the azygos.
(


Thanks for the report, Sport. You are a brave sport on MANY levels, and I'm sorry your MS has progressed so fast. I am taken by a few things you mention:
1. Your number of lesions had nothing to do with your level of disability-
this is something we are seeing time and time again. Jeff and Mel- with 20 lesions each- have minimal disability. And here you are-
2. Your absolute pressure was 3 to 4 times higher than other MS patients. (Can I get an Amen in the room?) If your blood was refluxing that fast, it would make sense that there would be more hypoxia and iron deposition (what Dr. Haacke has seen in PPMS patients on SWI MRI) and the immune system just can't clean up that fast. I'm interested to hear that Dr. Dake was certain it wasn't an issue for your heart. Good thing he's a cardio-thoracic doc, huh?

I hope, hope, hope, that this stenting mitigates that severe pressure issue. Please keep us posted, and hang in there, Sport. Good thoughts and healing prayers are with you-
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Rokkit » Mon Sep 28, 2009 11:08 am

Can I ask where your lesions are located? I'm curious if there can be lesions low in the spinal cord without azygous involvement.
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Postby Sport » Mon Sep 28, 2009 3:48 pm

Lew-no problem there. I am well stocked at the moment. Unfortunately, it's not as socially acceptable and it's harder to go out with your friends and partake in a public setting. I am convinced, though, that within my lifetime we will have some sort of sane drug policy in this country. It's funny, when the nurses at Stanford were taking down my medication list they asked about illegal drugs. I said, well I do have a valid medical ID card in the state of CA and it's not exactly illegal here. I think they marked me down as a criminal anyway. :o

Cheer-thanks for the compliments and well wishes. However, I don't feel brave or consider myself brave. It's more of just moving forward with the only rational option I felt like that I had. I have always known that time is not on my side, and I didn't want to take a wait and see approach and lose all that much more functionality during that time. I concluded that this procedure is much less risky (and Dr. Dake agreed) than the treatments that I have tried so far--Novantrone and Rituxan.

Rokkit-I have lesion at T9 posterior to the spinal cord, midline and to the left. I have a probable lesion in the dorsal cord at C2-3. In the brain, I have a few periventricular lesions in the left side of the pons. One of these is hypointense on T1 weighted imaging (aka a black hole). All lesions show normal enhancement.
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Postby CRHInv » Mon Sep 28, 2009 4:37 pm

Sport, you sound like you are doing great! I am thinking of you and hope you continue to feel even better. Hey, I was afraid of that no drinking thing. I had a feeling that would be the case, although I wasn't sure. I only drink a couple of glasses of wine on Sunday, but aggghhhh, that will be really hard to give up.
Hang in there, keep us posted how you are, and speedy healing to you!
Beth
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Postby Sport » Mon Sep 28, 2009 6:52 pm

Actually, my understanding from a nurse doing cardiothoracic work is that their really isn't anything that is strictly off limits--spinach, alcohol, etc. Consistency is the key thing. So if you are going to drink, you have to decide how much you are going to drink, and do it every day. I know myself. I don't have enough self control. If I say I will have one every day, then some days I will want three. If I say that, I will have three every day, then there will be days that I don't want any. The same goes for spinach. I'm not sure I am going to want it every day. In my case, I think it will be much easier just to avoid certain things.
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Postby Arcee » Tue Sep 29, 2009 7:57 am

Sport, so glad to hear that you are doing well. I was advised to be consistent in my use of alcohol, spinach, etc. and I did fine that way on the Coumadin. Consistent, at least for me, did not mean daily though. So I aimed for a certain number of salads and drinks per week and the levels were just fine. Hope whatever you settle on works well for you. Best of luck with it.
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 TFau » Tue Dec 01, 2009 7:16 pm

Has anyone heard how Sport is doing?
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Postby Shannon » Tue Dec 01, 2009 7:30 pm

Gosh, I was reading this thread thinking it was recent until I noticed that he/she hasn't posted since Sept 30th. Now I am a bit worried! Sport, come back and give us an update here, alright? :!:
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Postby Johnnymac » Tue Dec 01, 2009 10:43 pm

Sport wrote:Rokkit-I have lesion at T9 posterior to the spinal cord, midline and to the left. I have a probable lesion in the dorsal cord at C2-3. In the brain, I have a few periventricular lesions in the left side of the pons. One of these is hypointense on T1 weighted imaging (aka a black hole). All lesions show normal enhancement.


Sport, this is very interesting. My wife only has 2 'absolute' lesions, one in the left side of the pons and the other in the upper part of her neck (can't remember off the top of my head the exact location) that is very pronounced. Two other tiny spots that may or may not be in-active lesions.

The interesting thing is her primary problem is balance and walking. She has the fatigue, heat sensitivity, and some other more common problems as well but it really interesting you two both have a low number of lesions in relatively similar areas and are experiencing similar primary symptoms. Although they haven't diagnosed her with a progressive form yet, in the three years since she was first diagnosed she has gone from walking with a little difficulty to using a walker.

Please keep us updated on your story, very best wishes to you and your family!
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Postby Sport » Wed Dec 02, 2009 11:18 am

Hi All,

I am doing well. I haven't posted of much of anything because I haven't had anything intelligent to contribute :(

Recovery, has been fairly non-eventful which is good. The pain and movement restrictions in my right shoulder (as a result of the procedure) have improved significantly. I am not yet 100%, but I am hopeful that I will get there.

It's too soon to say whether the procedure has affected my disability one way or another. My progression over the last 5 years has been slow and steady, but it is really hard for me to see changes from day to day or week to week. I need six months or so before I am going to be able to make a definitive assessment.

I gave up on abstaining from alcohol. It was really tough getting my INR elevated. I think the biggest number that has been measured over the last couple of months of my weekly readings has been 2.7. I figured a few drinks weren't going to put me over any sort of danger threshold. Well, at least it hasn't yet anyway.

My follow-up appointment with Dr. Dake is next week so we'll see what he has to say about my recovery.
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Postby TFau » Wed Dec 02, 2009 11:40 am

All good news! I can totally relate to not being able to abstain from alcohol too long...I like my red wine on the weekends - although I tend toward beer in the winter (Smithwick's is my favourite)!

Anyway, good luck with your appt. I'll be following your progress and others with PPMS keenly! Of course, I love to hear the stories from the RRMS and SPMSers too!

Thanks for touching base,
Theresa
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Postby magoo » Wed Dec 02, 2009 6:19 pm

Sport,
I'll be there next week for my follow-up too!
Best of luck and continued progress,
Rhonda
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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