Sharon's post op CCSVI

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

Postby Sharon » Thu Aug 06, 2009 5:29 pm

A little more detail on the follow-up:

As I mentioned, my stents are doing the job - blood is flowing the way it should. I am off the blood thinners except for 1 baby aspirin a day.

Lew, the little "knob" on your neck which feels like a swollen gland is possibly where two stents overlap each other. Dake showed me where mine were overlapping, and that is where my "knob" is.

Dake is now using smaller stents. When he treated the first few of us, he thought bigger would be better, but now has decided the smaller stent is better. Less assualt on the vein which might be helping to reduce the inflammation and the spasms i.e. less recovery time and less pain.

Dake will be starting a medical trial - he is in the process of writing it. In the trial he will not be accepting all MS'rs like he is doing now. He needs to concentrate on the people who are seeing the most immediate benefit...those that have heat sensitivity, fatigue, brain fog. This is not to say that he will exclude those with physical disability...if they have the above symptoms then they would be considered.

I did notice a change in the duration of imaging scans. There is now a scan which takes 18 minutes - I did not have this the first time around. I asked the technician and he said it had been tweaked and added since the first patients.

Dake wants a follow-up in a year from the surgery - I can have it done here in Denver.

I think that is about it for now. It has been an interesting journey -- thanks to all of you for listening and supporting -- the staff at Stanford (technicians, assistants etc) are amazed how we have kept track of everyone and that we are patient advocates for ourselves and each other.

Sharon

Edit:
I forgot to mention - my lesions are unchanged :cry: I am not upset about this - would have been surprised if there had been a positive change--happy there are no additional lesions!
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Postby Jamie » Thu Aug 06, 2009 5:37 pm

The trial is not unusual.

They do it that way to 'prove' for the most easy to prove with the likeliest best most unequivocal results and then expand it from there.

Makes sense.

This is about to take off so much that there'll be plenty of places to get this done in 6 months to a year anyway.
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Postby Sharon » Thu Aug 06, 2009 5:47 pm

Jamie wrote
They do it that way to 'prove' for the most easy to prove with the likeliest best most unequivocal results and then expand it from there.


Exactly, Dake needs to start with his known best results....I told him that maybe by the time he gets the trial going, us with the physical stuff going on will have improvement and he is going to have to rethink his strategy :lol:
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Postby peekaboo » Fri Aug 07, 2009 7:56 am

Hi Sharon -

As usual your posts are full of wonderful details. You bring exciting news about Dr. D. going for a clinical trial. Hopefully, the only cost to the MSer will be travel. I know a couple of MSers that would sign up in a NY second.

Glad to hear you are doing well and off Coumadin. Bring back pics of China to share.

H
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Postby Sharon » Fri Aug 07, 2009 3:27 pm

Thanks Holly - everyone's story is a little different...I hope the details will help others.

The trial at Stanford -- can you believe that just four months ago Dake was operating on Jeff? The good doctor knew very little about MS, but he knew a whole lot about the vascular system and knew that he could fix the tangled mess he saw in Jeff's jugulars. The CCSVI model is "leaping and bounding" ....Dake mentioned he would like to get more neurologists on board with the model. I did not ask specifically about those at Stanford, but I got the impression that he is not getting a flood of emails or phone calls from the neurological community --maybe that will change after the symposium in September.

My trip to China is about a month off...maybe I will send you a picture of me walking the Great Wall (I can hope can't I??)

Sharon
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Postby cheerleader » Fri Aug 07, 2009 4:24 pm

Thanks so much for the update, Sharon. Glad you're home and off the blood thinners. So excited to hear about your upcoming adventure to China! I'm going to hold you to that pic on the Great Wall...would like to see that.

Wow. A real trial. Guess Dr. D is making a serious career change. That's such good news for the MS community at large. I can imagine neuros are not clamoring to accept a new model for MS right now. The ones at Stanford (Dorfman/Dunn) are established and very involved in drug trials. It will take some time, but it will happen.
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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby catfreak » Fri Aug 07, 2009 5:26 pm

Since I am going anyway I would sign up in a New York second!!

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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.
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Postby Sharon » Fri Nov 13, 2009 1:31 pm

Okay, everyone – I know, I have been lax in getting an update posted. Some of you have sent me PM’s and others have “publicly” reminded me to update my CCSVI story. Sorry. :oops: So, here goes:

I am a little over five months out from the procedure. I would consider being very close to 100% as far as recovery. As most of you know, Marie, Lew and I really got caught with shoulder and neck issues. I now have full range of motion with little to no pain in the left shoulder. My left arm and hand strength is back to pre-op range.

Now to the MS stuff:

Tinnitus – there has been no change since procedure. I still have the high pitch ringing in both ears (right is worse than the left). Dr. D had said for me , he did not think the tinnitus was related to the MS.

Burning between the shoulders – this has lessened but I would not say that it can be attributed to the stent. My posture has improved – if I keep my neck aligned with the spine, the burning sensation goes away. Typing on the computer for a period of time will cause the burning. Interestingly, the burning is just on the left shoulder blade now.

The “shock” on the right side of my head at the ear level has lessened. I still experience once in awhile. The “shock” happens when I turn my head a certain way. This sensation is something I have had for years.

Weak left wrist and hand – there is a definite change. I am able to use the keyboard with more ease. Prior to procedure my left hand would turn out to the outside edge and the fingers would become stiff. I am typing right now, with all fingers on the keyboard – the left side is “flowing” smoothly over the keys. The strength is hard to measure – I use a test from my neuro. I stretch my left hand out and then resist pushing the fingers down with the other hand. Pre-op my left fingers would bend down – I could not resist the pressure. Now, I am able to keep my fingers from bending.

Balance – my balance is better because my left side is stronger.
Foot drop – no change – still have
Ankle stiffness – no change - I am working on this with exercises, stretching and even some acupuncture.
Lifting and bending left knee - a small, positive change. I measure this by the fact my walking is smoother. I am able to clear my draggy left foot – sometimes.

Lower right backache – the backache has not come back since the day after surgery. This is amazing to me – why would this happen? Dr. D. just shakes his head and says for me to enjoy not having the pain.

Headaches – I did not have a headache all summer – no high altitude headaches when travelling to the mountains, no stress headaches – nada. That was until this past Sunday. I awoke with the old feeling of pre-headache pressure – sure enough by mid-morning I was having a full blown facial pain headache which lasted the usual 36 hours. I’ve decided to not worry about it for now. I will keep monitoring. It could have been from a seasonal flu shot which I had last week. I have informed Dr. D and will keep him updated.

Walking – Woo, Hoo! The changes are so subtle, and yet accumulative. The WalkAide is working better because my left leg is not as stiff. Prior to the procedure, I was really getting worried – I had the Frankenstein – stiff leg shuffle. My trip to China was a challenge because of all the walking tours; I was able to take part in everything --- I doubt that I would have been able with my condition prior to the procedure. Stairs are still a big problem – bending and lifting my knee to clear the rise of a stair is hard – I swing the leg out and hike the hip.

There are other little things that one notices. For instance, in my Pilates class, the left foot would turn to the side when placed in the strap which is on the leg spring. Consistently, for the past month, the ball of my foot is laying in the strap the way it is supposed to. This is huge to me –but, probably not significant to others. It is easier for me to carry a bag of groceries in each hand. In the morning, when I go out to get the paper, I notice that I walk heel to toe (this is without the Walkaide). I would not be able to walk heel to toe for a long distance -- that’s okay --- last year I would not have been able to walk heel to toe for ten feet! I continue to challenge my nervous and muscular system with Pilates, strength training, Feldenkrais, golf, and believe it or not I am trying to juggle with “wicky sticks”.

I am so glad that I decided to embark on this interesting journey. I have met many new cyber-space friends as I forward the CCSVI research . And, of course to all of you, --- I have learned so much from you; not only about MS, but about life----- what a wonderful group!

Sharon
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