Restenosing again: a cautionary and hopeful tale

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

Restenosing again: a cautionary and hopeful tale

Postby lucky125 » Sat Oct 09, 2010 6:40 am

From my blog: www.myliberationadventure.blogspot.com.

What a difference a week makes. Was it really just last Tuesday when I was walking around the mall like I owned the place? Yes, it was.

I am very bummed to report that this week has not been nearly as wonderful as the last. I fell on Sunday. I'm fine, but I wish the circumstances were more impressive than reality. I was not doing cartwheels, or dancing. I was making a damn bed. My left toe caught on what must have been a huge dust bunny, and I hit the floor. My elbow is a lovely shade of purple, and my hip and ego are also slightly bruised.

I saw my new PT on Monday and told her what happened. Neither of us thought it was too concerning, and I had a good workout.

Then it happened again on Wednesday. I stepped off of the elevator in the lobby of an office building, with cane in hand, and I caught that damned toe again. Splat! I'm still fine, but it appears that the writing is on the wall. I am restenosing.

If this is anything like the first time, it will be a slow process. Although I improved dramatically in the 24 hours after my treatment, the decline takes much longer. It has been fun while this treatment lasted. Two months definitely beats two weeks, but two years would have been even better!

I am in touch with Dr. Haskal's office, and his staff is amazing. He is out of the country this week, but I will see him for my three month follow up at the end of October. I hope he will be able to fix me not long after that. Hopes and reality don't always match up, but I'm still a hard-core optimist, so I am confident that where there's a will, there's a way.

May I climb up on my soapbox for just a second? I am the perfect example of why it is so important to stay as local as possible when choosing a doctor. I know that it is not realistic for everyone, especially all of you Canadians out there. I hope that changes soon.

It is also essential to have doctors and therapists document changes post-procedure. I have my neurologist's report showing my improvement in EDSS from 6 to 3.5 two weeks after the procedure. I also have my PT's evaluations from baseline, at one month, and two months. This is all objective evidence of the success of my procedure.

I can also tell you that fatigue is not an issue, swallowing is still excellent, and my thinking is still sharp. Those are my personal observations. No doubting neurologist is going to be swayed by any of that. They want objective data from reliable sources? I've got it!

I am going to get an AFO to support my left foot so that I don't fall again and risk doing real damage to myself. My nurse, PT and I are confident that this is just a temporary fix for a temporary problem. Once my jugulars are wide open again, I fully expect that I will only find myself down on the floor if I choose to be there. Perhaps I will check under the bed for that mean old dust bunny that tripped me up on Sunday!

The bottom line is that it is all going to be fine. I knew that restenosis was a real possibility. It happened. Oh, well. I am extremely lucky to have a fabulous doctor who, when he is able, will make it all better again. Hopefully next time it will last a lot longer. We shall see...
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 1eye » Sat Oct 09, 2010 7:49 am

I don't think I am re-stenosing (too soon since Barrie) but I had one yesterday too. Must be the moon. I got grass-stained knees, bloody knuckles and a cut and bruised elbow. But I am not deterred. Cuts heal, even on Plavix and Asperin. Maybe I was getting too confident (though I don't think so). Get re-tested!

Right. Distance. It *was* a long trip to Barrie. Five hours, for a one-hour appointment, but we have friends in Bracebridge. No clots, anyway, since no stents. Still hoping for the best. Give it time.

Careful with those AFOs. I have seen one that was spring-loaded, and allowed some dorsiflection. Mine is solid. I think I have atrophied rather badly and will probably not walk again.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby Cece » Sat Oct 09, 2010 10:28 am

Lucky, dangit, sorry to hear that. Third time's the charm?
1eye wrote:I think I have atrophied rather badly and will probably not walk again.

:(
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Postby Lyon » Sat Oct 09, 2010 10:43 am

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Last edited by Lyon on Sun Nov 20, 2011 5:46 pm, edited 1 time in total.
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Restenosing - are you sure ?

Postby MarkW » Sat Oct 09, 2010 10:47 am

Hello Lucky125,
Restenosis is not determined by a few falls. Only a venogram showing stenosis after it was successfully treated is restenosis. I have grave reservations about saying changes in short term symptoms are proof that destenosis has worked. To assess a disease like MS document average symptoms over a week, repeat at monthly intervals then consider the trend. After 6 months draw conclusions.
I would be interested to know if your surgeon will perform a venogram to investigate or say lets wait and see.
Also keep in mind that your brain and nerves need time to adjust to having more oxygen and less waste products, no one knows how long this settling down period will take.
Please rest and take life easy, your body needs time.
Kind regards,
MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Re: Restenosing - are you sure ?

Postby lucky125 » Sat Oct 09, 2010 11:33 am

MarkW wrote:Hello Lucky125,
Restenosis is not determined by a few falls. Only a venogram showing stenosis after it was successfully treated is restenosis. I have grave reservations about saying changes in short term symptoms are proof that destenosis has worked. To assess a disease like MS document average symptoms over a week, repeat at monthly intervals then consider the trend. After 6 months draw conclusions.
I would be interested to know if your surgeon will perform a venogram to investigate or say lets wait and see.
Also keep in mind that your brain and nerves need time to adjust to having more oxygen and less waste products, no one knows how long this settling down period will take.
Please rest and take life easy, your body needs time.
Kind regards,
MarkW


Thanks for your input, Mark. I have had this done 2 times. I have documented changes over many months, both ups and downs.

I have no intention of waiting 6 months to fix this- again. He may ask me to have an ultrasound, but I don't think he will refuse to treat me.

This is why I said how crucial it is to have documentation of symptoms both pre and post procedure. I am by default going to have to wait at least a month before I will be able to have a 3rd treatment. That will be plenty of time to ensure that my problems are consistently real.

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 ozarkcanoer » Sat Oct 09, 2010 6:24 pm

lucky...

I am so sorry to hear about your tripping problem, darn it !!! I guess you never had stents ? Dr Haskal is the greatest !! Have you decided to have stents after two angioplasties ? I am doing much better after my procedure on August 17 by Dr Haskal and I have had zero problems with my 2 stents. I'm not perfect but my life is worth living now. Please keep us posted. Your story and mine are traveling along the same path !

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Postby NotFound » Sat Oct 09, 2010 7:04 pm

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Yes, what about them stents?
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Postby lucky125 » Sat Oct 09, 2010 8:10 pm

Hi O.C. and Not Found,

No stents for me yet. I know that Haskal is very comfortable using them. I have great respect for him. He is also respectful of my decision to forgo them for now. I'll never say never, but I'm not ready to make that commitment right now.

I'm so glad that they are working for you O.C.! I think I remember that you did not have much of an initial response. I'm thrilled to hear that things are going well! Keep it up!

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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