2 months after second procedure and still improving!

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

2 months after second procedure and still improving!

Postby lucky125 » Fri Oct 01, 2010 6:25 pm

Hi all,

I still pinch myself everyday that I feel so well. May I share my latest accomplishments with you? From my most recent blog post:

Yesterday was yet another wonderfully productive day in what seems to now be my new "normal" life. I woke at the ungodly hour of 6:30am to get the kids off to school. I had breakfast, showered*(see note below), then met my mom at the mall to help her shop for a robe. When the first department store did not have what we were looking for, we decided to try another. I can walk with confidence (still carrying the cane for safety) within a giant department store these days, but schlepping from one end of the mall to the other is still not a good use of my energy. We drove to the other store.

Once inside we ran into my aunt. She was there to meet three of my cousins for lunch. We joined them for a lovely impromptu family eat and gab fest!

After we ate my mom went home. I decided to stay to do some shopping for me. To put things in perspective, I could not even walk from the closest handicapped space in the parking lot to the front door of this store pre-Liberation. Now here I was going from one store to another, shopping, dining, then doing more shopping! I tried on many pairs of pants and stood for the seamstress while she pinned them to be hemmed. Did I mention that I showered in the morning, too?!?

I have very rarely shopped in an actual store for myself in the past couple of years. If I couldn't find something online with free delivery and a liberal return policy, I didn't buy it. Sound familiar?

When I was done I was tired, but my legs weren't burning or aching. I was not beside myself with cognitive fatigue either. It was just plain "I've had a long day" kind of tired. I carried my purchases to the car, climbed in, and sat there for a minute with a huge stupid grin on my face. I still can't believe that I can do so many things that I once thought I would never do (without a mobility device and a buddy) again.

I have also had a dramatic improvement in my spasticity over the past two months. Before my second procedure I was taking 20mg of Baclofen three times a day. I would need to stretch every time I stood up, and my first few steps were always jerky. Even with that much Baclofen, my legs ached constantly, and I spent many evenings with my left hamstring resting on a heating pad.

Now I am down to 20mg in the morning, and 10mg at bedtime. I am getting ready to cut the morning dose to 10mg and see how that goes. My legs still get tight during the day, especially if I have been sitting too long. But instead of needing a pill, I walk around a little bit and my muscles loosen up all by themselves. I have been dealing with spasticity for at least 13 years. I never thought my nerves would be able to heal enough to see this kind of improvement! I assume that healing is happening. I don't know how else to explain this amazing improvement. I may never know what mechanism is at work to make these changes possible. I am just committed to appreciating and documenting them for you, Drs. Haskal and Tornatore, and myself. One day someone smarter than I am will be able to tell me why this is happening. For now I'm just enjoying it all.

Happy Autumn everyone!

* Showering has long been an evening activity for me. The heat of the water, standing for 10 minutes straight, and using a hot blow dryer used to act as a knock out punch. Night, night, Nicole. Now I can shower in the morning and still have strength and stamina to do other things, too! Incredible!
Liberated at Georgetown U. 3/3/10. Subsequent procedures at U of Maryland with Dr. Ziv Haskal 7/30/10, 12/2/10, 5/11/11. http://myliberationadventure.blogspot.com
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Postby whyRwehere » Fri Oct 01, 2010 10:11 pm

That's an encouraging story...I particularly like the continual improvement over time.
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Postby patticake66 » Sat Oct 02, 2010 7:21 am

I don't get it, it is stories like this that should make any doctor allow any pwms to get this procedure regardless of any scientific proof....how inspiring...you give me hope!!!!
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Postby Kathyj08 » Sat Oct 02, 2010 11:29 am

so glad the second time is working and lasting longer!
(check your pm's please) :)
Kathy
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Postby garyak » Sat Oct 02, 2010 12:54 pm

You are truely one of the "lucky" ones to have had this treatment that has worked so well, thanks for sharing - best of luck, gary
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Postby L » Sat Oct 02, 2010 2:30 pm

I'm so glad for you! You must feel pretty lucky indeed!
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Postby CCSVIhusband » Sun Oct 03, 2010 6:09 am

I think the one thing to take away from Lucky's story is that she had improvements after her 1st procedure, but didn't "feel" something was right still. She pushed to get another procedure, and her doctor agreed that something still wasn't right ...

She had a 2nd procedure and, boom, new and better results. (I don't want to speak for her, but we have discussed this off these boards).

Often times I see persons on this board say, I had the procedure, had some results (or sometimes no results) ... and they give up on CCSVI or act lost and depressed.

My advice is to keep advocating for yourself, keep pushing the doctors to challenge their thinking and if they don't, find another one who will. The science will come in time, CCSVI is going to be a HUGE part of this whole puzzle. It can't fix already permanently done damage, but it can do a LOT of other things ... don't get discouraged, go out there and push your doctors for the best treatment they can offer.

Congrats Lucky :-) ... glad you found that doctor of yours!
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Postby lucky125 » Sun Oct 03, 2010 6:22 am

CCSVIhusband wrote:I think the one thing to take away from Lucky's story is that she had improvements after her 1st procedure, but didn't "feel" something was right still. She pushed to get another procedure, and her doctor agreed that something still wasn't right ...

She had a 2nd procedure and, boom, new and better results. (I don't want to speak for her, but we have discussed this off these boards).

Often times I see persons on this board say, I had the procedure, had some results (or sometimes no results) ... and they give up on CCSVI or act lost and depressed.

My advice is to keep advocating for yourself, keep pushing the doctors to challenge their thinking and if they don't, find another one who will. The science will come in time, CCSVI is going to be a HUGE part of this whole puzzle. It can't fix already permanently done damage, but it can do a LOT of other things ... don't get discouraged, go out there and push your doctors for the best treatment they can offer.

Congrats Lucky :-) ... glad you found that doctor of yours!


Yeah, what he said! Thank you, kind sir.

The main difference between my two procedures was the size of the balloons used (slightly bigger the second time), and the longer duration of their inflation. Haskal, the second doc, also ballooned the azygos vein even though there was no obvious stenosis or obstruction visible with IVUS. I like to think of that is great insurance.
Liberated at Georgetown U. 3/3/10. Subsequent procedures at U of Maryland with Dr. Ziv Haskal 7/30/10, 12/2/10, 5/11/11. http://myliberationadventure.blogspot.com
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Postby Rosegirl » Sun Oct 03, 2010 11:34 am

It seemed that a few weeks ago, almost everything people reported after a venogram was positive, but lately, we hear lots more negatives.

One thing that could be skewing the study is that we usually don't know who treated the patient. For example, Georgetown reportedly did over a hundred before they shut down the study for lack of positive results. (I heard that there were about 130 people treated and only about 10 percent saw improvement. Can anyone confirm their stats?) So we get a different picture if many of those reporting no improvement/worsening were from Georgetown.

A similar skewing of data is if those reporting negatively were treated by "newcomers" to the CCSVI concept and had little or no specific training for this condition.

I hope the training level of the IR who does each procedure is factored into the data that will someday be part of the registry.
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Postby ozarkcanoer » Sun Oct 03, 2010 11:59 am

I am thrilled to read your post, Lucky !!! I am feeling pretty good myself these days. But my "official" post on whether I am really better will have to wait until enough time has elapsed.

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Postby MegansMom » Mon Oct 04, 2010 2:43 pm

How wonderful !

I might add that perhaps physical rehab might help some. Obviously the electrical circuits work better with oxygenated juice and can stop spasticity and pain but unused muscles need good range of motion and warming up to see the full gamut.


Remyelination which might be what occurs post- angio takes many months. We know this with other demyelinating diseases such as Guillian Barre ( which is an acute attack of demyelination)

I have seen those patients get better, so we know that re-myelination is possible but it is never fast.

As long as the axons are alive there is hope of re-insulating that cell.

Getting regular exercise, good diet, hydration, and pacing onesself are good ideas

I think maybe good physical rehab may be indicated in certain cases

But with your new shoppong trips you might not need rehab! Bravo!
Cat (Catherine Somerville on FB)
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My 35 yo daughter is newly dx 8/19/10 (had 12 symptoms)
Dx with Type A CCSVI- 1 IJV & double "candy wrapper" appearance of her Azygos
Venoplasty done Sept 21, 2010
Doing extremely well-
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Postby lucky125 » Mon Oct 04, 2010 2:48 pm

MegansMom wrote:How wonderful !

I might add that perhaps physical rehab might help some. Obviously the electrical circuits work better with oxygenated juice and can stop spasticity and pain but unused muscles need good range of motion and warming up to see the full gamut.


Remyelination which might be what occurs post- angio takes many months. We know this with other demyelinating diseases such as Guillian Barre ( which is an acute attack of demyelination)

I have seen those patients get better, so we know that re-myelination is possible but it is never fast.

As long as the axons are alive there is hope of re-insulating that cell.

Getting regular exercise, good diet, hydration, and pacing onesself are good ideas

I think maybe good physical rehab may be indicated in certain cases

But with your new shoppong trips you might not need rehab! Bravo!


Thanks, Cat.
I'm a huge fan of PT. I am going twice a week. Please see my blog for the high praise I have for the PTs in my life.
Nicole
Liberated at Georgetown U. 3/3/10. Subsequent procedures at U of Maryland with Dr. Ziv Haskal 7/30/10, 12/2/10, 5/11/11. http://myliberationadventure.blogspot.com
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Postby LR1234 » Mon Oct 04, 2010 3:04 pm

Hi Lucky
Are you on Blood thinners still? if so which ones?
I hope you continue to feel well x
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Postby lucky125 » Mon Oct 04, 2010 4:08 pm

LR1234 wrote:Hi Lucky
Are you on Blood thinners still? if so which ones?
I hope you continue to feel well x


I am on a full strength aspirin for 3 months post-procedure. That's it.
Liberated at Georgetown U. 3/3/10. Subsequent procedures at U of Maryland with Dr. Ziv Haskal 7/30/10, 12/2/10, 5/11/11. http://myliberationadventure.blogspot.com
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