High Hopes on Pacific Coast

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

Postby Rokkit » Tue Nov 10, 2009 4:36 pm

This is great news Tracy. I'm also wondering if getting off the coumadin will help you feel better.
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Postby questor » Sat Nov 28, 2009 3:30 pm

Loobie's Post in the 'Oh, Radeck?' Topic wrote:...I chose to do this damn the risks, but it was my choice and I did it not even really knowing the risks. Now that some of them are known, everyone needs to know that this isn't a trip to the dentist...

I post this after learning of Radeck's unfortunate recent complication.

A certain irony strikes me here. I made a fast decision to be tested and treated last July based on various anecdotal reports and a high-level layman's feel-good understanding of the science behind Zamboni's medical papers. I did this knowing there were many unknowns in the procedure, both in regard to actual short- and long-term benefits, and that there were risks of complication. At the time, I was willing to take almost any risk if there were benefits to be had.

The irony is, although I was willing to take this risk because my quality of life had deteriorated so in the last few years, this same deterioration and time since diagnosis appear to mean that I can expect to experience fewer short-term benefits compared to those who were treated earlier in their disease progression. Longer-term benefits remain to be seen, and my hopes now hang on these.

So, it seems that those most motivated to take the risks associated with this procedure may potentially have the least to gain from it.

If I was still able to work, walk without a cane, problem solve consistently, remember things reliably, and pass as normal, I think I would have been less willing to take this risk. That is, I'd perhaps have been willing to wait for the CCSVI science to develop further, and to count on a continued slow progression of MS in my case.

Here I am, now. Yes, with stents my blood now flows fine through my internal jugular veins, yes the stents are secure and positioned well. But, I still experience a certain amount of heat sensitivity, I still experience "cog-fog" and various kinds of fatigue, cognitive and physical (I'm particularly aware of this after the Thanksgiving Holiday), I still have low stamina and need to rest several times a day, I still use a cane for long walks or when I am fatigued, I still have nystagmus and vision issues, I still get migraines if I stop my preventative medication, and I now have annoying shoulder and neck problems that I hope will soon go away.

Indeed, certain benefits do remain, as I have reported elsewhere, but I anxiously await future published peer-reviewed reports about this condition and its treatment, and I await more published information about CCSVI and its actual relationship to MS.

There is a certain amount of risk in assuming personal results will follow based solely on anecdotal reports of others.

--Tracy
Last edited by questor on Mon Nov 30, 2009 7:37 pm, edited 9 times in total.
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Postby Sharon » Sat Nov 28, 2009 6:11 pm

Tracy -

Have you progressed since the stent procedure? I, like you, have many symptoms which have not gone away. The good news is that I have no new symptoms -- this was my main objective in having the stent procedure -- NOT TO PROGRESS!

Great post Tracy -- I think people need to be aware there are no guarantees -- you did an excellent job of reminding everyone that the "stenter" is not going to be normal - we may not get worse, hopefully, we may be a bit better, but we will probably never be normal.

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Postby Lgleaton » Sat Nov 28, 2009 6:42 pm

Sharon wrote:The good news is that I have no new symptoms -- this was my main objective in having the stent procedure -- NOT TO PROGRESS!

Great post Tracy -- I think people need to be aware there are no guarantees -- you did an excellent job of reminding everyone that the "stenter" is not going to be normal - we may not get worse, hopefully, we may be a bit better, but we will probably never be normal.

Sharon


This is all I'm hoping for!
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Postby questor » Sun Nov 29, 2009 2:27 pm

Sharon wrote:Have you progressed since the stent procedure? I, like you, have many symptoms which have not gone away. The good news is that I have no new symptoms -- this was my main objective in having the stent procedure -- NOT TO PROGRESS!

Sharon, thanks for your response. I agree that stopping progression will be a very fine result of the stent procedure. I rarely have relapses in which new symptoms appear. Progression is very slow in my case, and given the day-to-day variability (based on any number of factors, most of which are still a mystery to me), it is very hard to actually measure progression except over a long period, especially when I use a subjective measuring stick. Looking back over multi-year chunks, it is much easier to see progression.

So, don't know yet, hopefully I will know positively in a year or two.

But, I do know that this wasn't the magic cure I was hoping for (at least not in terms of taking away many of the day-to-day symptoms, or the variability).

I think that's why I'm so keen to see new published medical science come out regarding CCSVI and MS, I can pin my hopes on that. I'm now much less willing to pin hopes on unpublished anecdotal data.

But, I'm still very glad I found out about and took this step. I honestly feel my better days are better than before. I guess my initial hopes were unrealistic (high hopes...).

--Tracy
Last edited by questor on Sun Nov 29, 2009 9:33 pm, edited 1 time in total.
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Postby Sharon » Sun Nov 29, 2009 4:17 pm

Tracy wrote
I guess my initial hopes were unrealistic (high hopes...).


I hope the MS'rs who are getting ready to go to Stanford or who are lurking on the forum read the above statement. There is a euphoria on this site and across the Internet about treating CCSVI. I have been reading posts from other sites in which MS'rs are now saying this is a cure --- I want to scream into the computer and tell them "NO"!! Dr. Zamboni's patient studies are now about three years out --- he is saying more studies need to be completed. I believe I have read everything which Zamboni has said publicly -- he has never said this is a cure for MS. He has said that CCSVI could be a "revolution for the research and diagnosis of multiple sclerosis.

As I stated before, if I have not progressed in a years time (which will be June), I will consider myself to be very fortunate. And, Tracy like you, my progression was always very slow --- very hard to measure over the short lengths of time. I would measure from one year to the next, hence, my time table is one year.

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Postby jay123 » Sun Nov 29, 2009 4:30 pm

and I believe I read that Dr. Zamboni's progressive patients did not see improvements for 18 months if I am correct.
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ccvi and continuous chelation

Postby jak7ham9 » Sun Nov 29, 2009 5:20 pm

Here is food for thought. I had always used chelation in the past to remove heavy metals and it always made me feel better stronger better walking etc.. I lost my chelation doc two years ago and have felt worse. I have an appt with vascular surgeon to do tests and then stent open veins. I am thinking that if one continued chelation with edta, glutathione, a iron remover (like deferron whichever crosses bbb best) and vitamin c after stents one would see even better results and not have future narrowing of veins. What do you think cheerleader especially?. B
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Postby questor » Sun Nov 29, 2009 9:13 pm

jak7ham9,
You might have better results getting comments if you repost your question in a new topic, or in a topic where chelation and CCSVI are currently being discussed, such as the EGCG, Iron, and the Brain topic. Here's a link:

EGCG. Iron, and the Brain

I think with the high number of posts recently, many members are now only looking at new posts in topics that they've chosen to follow, or that interest them.

Just a suggestion, and good luck...

--Tracy
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Postby cheerleader » Sun Nov 29, 2009 9:48 pm

Tracy-
thanks for redirecting jak. I'm interested in your thread and didn't want it to go too far OT. (also not familiar with injectable chelation)

I'm sorry you haven't experienced more of the immediacy of the fatigue and heat intolerance relief that Jeff and some of the newer MSers experienced. I'm sure some day there will be a medical explanation regarding iron levels and hypoxic injury...but that doesn't make any difference to someone who is suffering now, and hopes for relief. I still hold out hope that there will be continued healing for you. It's important to be honest about the good, bad and ugly. Only then will future MS patients be able to decide a course of action for themselves.
Hope you still have high hopes, my dear-
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Re: ccvi and continuous chelation

Postby NHE » Mon Nov 30, 2009 2:56 am

jak7ham9 wrote:Here is food for thought. I had always used chelation in the past to remove heavy metals and it always made me feel better stronger better walking etc.. I lost my chelation doc two years ago and have felt worse. I have an appt with vascular surgeon to do tests and then stent open veins. I am thinking that if one continued chelation with edta, glutathione, a iron remover (like deferron whichever crosses bbb best) and vitamin c after stents one would see even better results and not have future narrowing of veins. What do you think cheerleader especially?. B


That's an interesting hypothesis. However, EDTA may not be a good option. Here's some data on metal ion binding by EDTA which shows that it will readily bind calcium, magnesium and zinc in addition to iron and many other divalent cations. Note that the larger the number of the formation constant, the stronger the bond is between EDTA and the metal ion.

This site also has some cautionary statements about using EDTA with respect to zinc binding.

French researchers have found that 24 hours after an infusion of EDTA, the urine of human subjects contained 15 times the normal amount of zinc [5]. Without replacement, the loss of this much zinc over the months during which 30 to 40 treatments are delivered will increase the potential for severe impairment of immune function, precancerous cellular mutations, loss in selective permeability of cell membranes and altered solubility of pancreatic insulin.


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Postby questor » Wed Dec 02, 2009 7:54 pm

cheerleader wrote:I'm sorry you haven't experienced more of the immediacy of the fatigue and heat intolerance relief that Jeff and some of the newer MSers experienced. I'm sure some day there will be a medical explanation regarding iron levels and hypoxic injury...

Cheer,
Thank you for your post. I don't mean to focus negatively on my experience, I have definitely felt some benefit, and still hope to experience more with time. I'm truly grateful to have found out about this treatment from the path you and others here have opened.

But, I do want to leave an accurate record of my experience, especially for those who have had MS for many years, are now progressive, and are wondering whether to go for it or to wait to see how this develops. I have several friends with very advanced disability, and I can't imagine them dealing with the pain of recovery in the hope they'll experience the same benefit that many here are experiencing.

Still hoping (just not as high)...

--Tracy
CCSVI Procedure 9/16/2009 at Stanford
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Postby LR1234 » Thu Dec 03, 2009 2:57 am

I think with CCSVI we do need to change our expectiations

I think RRMSers can hope for improvement as well as no progression

SPMSers and PPMSers have to hope for no progression from the procedure anything more than that is a bonus.

I hope for you Tracy that you have no more progression and that your body over time is allowed to heal xx
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Postby whyRwehere » Thu Dec 03, 2009 4:51 am

Tracy,
my husband is also like you...progression so slow, that it is hard to see how we got here, him barely walking, bladder issues, other issues...it just was a bit worse and worse, no exact time line. Anyhow, I wonder, still, how many people had all the veins checked...no one ever mentions it. My husband had his pelvic veins( well, that is what I am calling them :) ) investigated. Turns out he is completely missing some! Perhaps there remains untreated areas. If that were the case, would you do it again?
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Postby mormiles » Thu Dec 03, 2009 8:05 am

Sounds familiar. Steve's progression was very slow over a very long time period, but it accelerated after he hit middle-age...and the rate of acceleration rose with time over the past several years. The Vanderbilt Protocol slowed it, but he still progressed. Frankly, we didn't envision what happened to radeck when considering the risks of the stenting, but looking back, even if we had considered that risk, we probably would have made the same decision.

It's only a week until Steve's follow-up visit. He has had to deal with unrelated challenges that have hampered his post-op recovery period. At the moment, the only things that are better with any consistency is the disappearance of the restless legs and a head that's fairly clear most of the time. Sadly, since the H1N1 hit him, his balance is stinkier than it's ever been. There have been brief periods of other improvements, and they offer encouragement. BUT, we are both moving from acknowledgement to acceptance (ala Loobie) that what we are seeing is probably what the future will hold. I refuse not to hope for more, though, so I'll strive to strike a balance between acceptance and hopeful patience.

Dr. Zamboni's new article held a mixed bag for SPMSers, but there again, the outlook for SPMSers was based on 18 months out. At that stage, he saw improved motor skills but not so for cognitive function. It used to be thought that neural repair didn't happen. Now it's known that it does happen, but that it favors the young. In any case, just how far neural repair will go is a huge unknown. When the body repairs itself, it takes care of the most pressing needs first---the more physical needs that enable survival and movement. Another consideration is that nerve regeneration is slow...like at least 2 years. If the cognitive skills are last in line for recovery, measuring cognitive recovery at 18 months is perhaps not even appropriate except to mark time.
Joyce (aka cypriane)~caregiver and advocate in Dallas for Steve (SPMS)----"Enter through the narrowgate..."
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