Stanford Relapses?

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

9 mos out

Postby greenwave » Thu Mar 11, 2010 11:19 pm

My husband is 9 mos out from having both IJ's stented. Also did high-dose cyclophosphamide the winter of 2008 prior to this. No relapses, all fatigue and heat intolerance, etc. gone. Some improvement in prior damage. After chemo had no relapses, but still had the other daily "bothersome" ones that are gone. Cognitive problems are gone as well.
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Postby hope410 » Fri Mar 12, 2010 12:59 am

I also thank those who continue to update us on how they're doing post-treatment.

I would love to hear MRI results post-treatment compared to pre-treatment too. That would be really helpful in objectively assessing the improvement in symptoms.
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Postby Sharon » Fri Mar 12, 2010 8:54 am

hope410 wrote
I would love to hear MRI results post-treatment compared to pre-treatment too. That would be really helpful in objectively assessing the improvement in symptoms.


It will not be long before the first stenter, Jeff, goes back for his annual follow-up - MRI's/ MRV's will be taken again. Then there will be a steady stream of us either going back to Stanford or having follow-up closer to home. So the post treatment MRI's are coming in a few months.

Sharon
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Postby Rose2 » Fri Mar 12, 2010 11:31 am

Hope410,
Hi. I had my 2 month follow up MRI/MRV in December 09 after my Oct. 09 stents and angioplasty. I have one stent high jugular, one stent azygos, and Dr. Dake did an angioplasty just at the subclavical area of the jugular. I think this is important for those who think Dr. Dake just does stents.
My follow up MRI/MRV at just 2 months was astonishing. The big fat 'collateral' veins that were taking the load of the pinched jugular before, were small and faintly visible (post-op) where as before they were huge, fat and shiny white (pre-op). Post Op the Jugular looked like a nice vein with structure. PreOp it was only visible to me where Dr. Dake showed me the problems. After, I could see all by myself.
I am not going to say I know how to read those MRIs. That is an art in itself, I have decided. But the areas that were treated, sure look alot better to me.
And Dr. Dake was very happy with the results.
SO, as of today, I have declared myself MS FREE.
I do not have even ONE of the horrible MS issues I dealt with for 10 years. Honest.
When I run into people now who I have not seen for a few years they all say the same thing. 'OH MY GOD, WHAT HAPPENED?" I tell them I don't have MS anymore, I had a venous problem repaired at Stanford and I give them my card (yes!) to call me if they want more info. It saves alot of time that we usually don't have in meeting in the grocery store or wherever. And they always say they know someone who wants the info.
So, I have given out alot of info this way. Just walking the streets!! ha ha
So, I hope this is the information you are looking for?
1. Yes, obvious difference in the appearance in MRI post op at 2 months.
2. Yes, obvious and amazing results.
3. I have coined my own phrase, MS FREE!! Cancer patients are called Cancer Free after treatmens so I am MS FREE after treatment. The End!
Sincerely, Rose I pray daily for this to continue for everyone.
Please feel free to PM me if you would like to ask me anything. ;)
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Postby happydance » Fri Mar 12, 2010 12:16 pm

Rose2,

It's great to hear your feeling so much better. I really appreciate the time you have taken to share your story.

Can you please posted a copy of how your doing in the tracking thread. I've noticed some people haven't updated since Oct 09. It would really help those who are looking to see what results people are having after treatment.

Thanks,
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Postby Rose2 » Fri Mar 12, 2010 12:20 pm

Happydance,
OK.... I will try the tracking site again. For some reason it is just not user friendly for me.
Thansk, Rose
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Postby Sharon » Fri Mar 12, 2010 12:37 pm

Happydance wrote
Can you please posted a copy of how your doing in the tracking thread. I've noticed some people haven't updated since Oct 09. It would really help those who are looking to see what results people are having after treatment.


Some of the people who were treated have gotten busy and moved on with their lives -- I think they would have been posting if things were not going well. Others of us who are lurking around probably have said just about everything -- I am sure we will update at the one year
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Re: 9 mos out

Postby Cece » Fri Mar 12, 2010 1:18 pm

greenwave wrote:My husband is 9 mos out from having both IJ's stented. Also did high-dose cyclophosphamide the winter of 2008 prior to this. No relapses, all fatigue and heat intolerance, etc. gone. Some improvement in prior damage. After chemo had no relapses, but still had the other daily "bothersome" ones that are gone. Cognitive problems are gone as well.


I know this is a "study of one" but to me it reads that the chemo took care of the autoimmunity issues (no relapses) but it took the stenting to take care of the CCSVI issues (fatigue, heat intolerance, cognitive). Honestly chemo is like dynamiting the immune system. I suppose the post-chemo symptoms would have been considered a result of permanent nerve damage...but not when stenting took care of even them. Greenwave, congratulations on your husband's progress, it seems like he was aggressive in pursuing treatment and how wonderful that it all worked out.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby questor » Sat Mar 13, 2010 9:23 am

I am now 6-months out from receiving one stent each in left and right upper jugulars.

I still have MS, and am still quite susceptible to stress and over-doing it, but can't say that I have progressed. I'm hoping to recover soon from a stressful week, which seems to have brought back an increase in walking and balance instability, lower-body weakness, an increased need to take short rest-breaks during the day, and a worsening of afternoon cognitive fog. If prednisone still helped to reduce symptoms during a mild flare-up, I'd considering asking for a 10-day course, but as it is, prednisone no longer does anything for me (except interfere with calcium absorption). I hope this soon starts to clear by itself.

As I was laying in bed last night re-experiencing achiness in my legs I was appreciating the reduction I have had from physical fatigue and poor stamina over the last several months. On the good side, I still continue to experience some reduction in night-time spasticity in my lower legs.

My hope last September was that the stent procedure would put me on the road to regaining much that I have lost these last several years.

I'm not there yet. But, I'm still hoping.

--Tracy
Last edited by questor on Mon Mar 15, 2010 2:04 pm, edited 3 times in total.
CCSVI Procedure 9/16/2009 at Stanford
Stent in left and right IJVs
SPMS
Copaxone and Ampyra user
Botox Bladder Injections
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Postby Rose2 » Sat Mar 13, 2010 12:25 pm

Questor,
I am glad to read your update. I am glad to hear about some relief in the fatigue issue. I hope that helps you to go a little further with the other issues you want to improve. I know for myself, I don't know if the improvement in the fatigue issue promoted the improvement of other MS symptoms or if the improvement in those symptoms made the fatigue better.
Chicken and the egg. Go slow and be kind to yourself.
Sincerely, Rose ;)
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