MS Liberation: Expectations and Reality

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

MS Liberation: Expectations and Reality

Postby richardcampbell » Mon Nov 01, 2010 12:26 am

Notwithstanding, I am preparing to have the Liberation treatment done, soon I hope.

I thought I would share my thoughts and expectations, especially with those for whom there has not been the relief they were expecting.

I have been a diagnosed MS sufferer for 10 years now. I have relapsing/remitting MS. Going carefully through my symptomology, it is likely that I have had this illness for 15-17 years, and possibly even longer.

It has been 9 years since I had an MRI, but even then there were many lesions in both my brain and spine. I know that nerve tissue can regenerate if it is still viable after an inflammatory episode, but I also know that dead scar tissue never comes back to life. Other neurones may take over some functions, but dead is dead and it is unreasonable to expect improved blood flow will raise the dead scars back to life.

We all know, I hope, that MS is a very individual disease. It takes many different paths, attacking many differing parts in individuals and effects them in as many different ways as there are suffers. Equally, the extent of permanent neurological damages varies greatly from patient to patient.

I think it reasonable that I can expect quick improvements, though to what level i do not know, in those functions that are currently being affected by CO2/O2/metabolic toxins flow problems, such as some of the cognition and mental fatigue problems. It is also reasonable to expect over time that the detoxification of iron from affected areas will lead to further improvements in those and hopefully other areas currently deficient. And like detoxifications of other kinds, the detoxification process might well be unpleasant or even awful--for a time.

I am not expecting some other things to be healed so easily and I fully expect that where irreplaceable neurones have been lost, any correlated deficits that have not been re-wired since, will remain.

For example. There is a lot of permanent damage in my spinal cord where the reflex arcs are situated so I expect that I will alway fall like a timber tree when pushed off balance. On the other hand, I pray that I will see sufficient relief from chronic MS fatigue, enough to work at a paying job again, or even just any of my one time volunteer positions.

It grieves me that some few of you have actually had a worsening of your MS. What we can not know, of course, is if that worsening would have happened regardless, or even perhaps, might have been even more aggressive without the procedures you had. Progressives, Primary-Progressives, Relapsing-Remitters, Idiopathic, and Single Episode suffers all have differing experiences of MS and should all expect to have differing outcomes. Venoplasty is not a panacea; it is a solution to a vascular problem that is clearly related to MS, but it still remains uncertain as to what that relationship is.

The Liberation procedure is hope, in an area were there has been no hope at all. What is it hope of? Hope of a chance, that is what. A chance at relief foremost: and possible a direction towards a cure. But never forget that it primarily a matter of hope at this time.

We are explorers in uncharted territory, gambling that we will arrive in a new world, one free from many if not all of the old chains that bound us. Some will get lost, a few, sadly will perish, many more will end up with an improved life, and some will find a bonanza of good health. We are taking risks, but as vivavie said, still "better odds than the bridge." That is what hope gives us.

You are all heros in the original sense of the word: risk takers looking to find new things that will improve their own and others’ lives, who gamble with their very lives for that goal. The success stories, the disappointments, and the few failures, all acting as one--you are making history, a peoples' history, driven by a common goal and will, not a remote agenda or base motive.

Especially for the disappointed, my experience with the addicted, the emotionally and the physically damaged has taught me that healing always takes time, occurs in many layers, goes in fits and starts, and sometime causes more pain than the original problem, in the short run. MS is a disease for the long run, it should come as no surprise if healing from it is too.

Take heart, you are not alone, you are not done.



My love to you all, and I pray for God's blessings upon you,

Richard C
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Postby Motiak » Mon Nov 01, 2010 3:11 am

I hope that your procedure goes well. I can't believe that the worsening some people experience is the same that they would have experienced without the procedure. I think it more shows the inadequacies of the treatment that we currently use, it is not a foolproof method of treatment. However, everything I've read shows much more improvements than worsening so I hope the best for you!
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Postby cheerleader » Mon Nov 01, 2010 7:15 am

Richard---
Since you are traveling from Canada, those who have gone before would like to make sure you have aftercare at home--someone to monitor your coagulation numbers (INR and/or PT) and to watch you for any potential complications.

On Facebook, we have been urging patients to stay local, and work with doctors who can provide them follow-up care. We realize that this is not possible for Canadians at this time, and want to encourage all who travel to have doctors lined up at home for aftercare before they leave their country.

Know if you have any coagulation issues BEFORE being treated. Work with your doctor on a specific blood thinning routine tailored to you. If this is not discussed, bring it up.
traveling mercies---
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Cece » Mon Nov 01, 2010 7:52 am

Great post, Richard, it is good to see it all laid out clearly.

We have all heard Dr. Siskin's observations (1/3rd miracle improvements, 1/3 minor initial improvements, 1/3 no improvements), it serves to diminish expectations which can be a good thing if expectations are too high.
"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 blossom » Mon Nov 01, 2010 8:02 am

richard, that was put so well. hope you are one of the ones that experiences many great improvements. be safe and the best to you.
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Postby richardcampbell » Mon Nov 01, 2010 11:30 am

cheerleader wrote:Richard---
Since you are traveling from Canada, those who have gone before would like to make sure you have aftercare at home--someone to monitor your coagulation numbers (INR and/or PT) and to watch you for any potential complications. [...]



You are so right, cheerleader. It is always worth repeating--Be Prepared--works for Boy Scouts; works for me; it will work for anyone. I too saw that repost and added my affirmation to it:

Richard Campbell's response to: http://www.facebook.com/note.php?note_i ... 0796282297

I also recommend prudent involvement in one's health choices. Though not red flagged or any such, I have had a C-T Scan of my heart to make sure that at my, age, weight, BP and other factors, nothing is lurking that might negatively affect my proposed Liberation treatment.

As I was reminded by the MS Society outreach worker that contacted me in the weeks after my diagnosis back 2000, "not everything is MS" Meaning of course that you can get sick with any of the other ailments than plague us just fine without any involvement from MS.

Where it is in your power, I recommend that any issues that might have a negative effect on venoplasty, clotting factors, drug reactions, and the like, should be looked into (if need be/possibly addressed) so as to build a better body of knowledge for your informed decision.

I am quite fortunate by most standards with this disease in that my progression has fallen into a very long remission. I have had some faculties improve slowly. But I can totally understand why any of us suffers have such a hard time with the advise to "wait" when either we have have had our lives curtailed and hemmed in for years and/or we are looking at a bleak, worsening future.

When there is a real hope of at least some relief after years of empty promises and failed treatments, almost any risk seems worth it. Nevertheless, I join Joan in advising to take just a little more time and to set up your aftercare resources and make yourselves better prepared.

RC
16 hours ago


I never forget that it is surgery, very safe as surgeries go, but nonetheless, surgery, with all its inherent risks. I must and do take it seriously. As I said to my long suffering (where there is MS, everyone that loves you suffers along with you) wife that if I can not line up an avenue of basic or better aftercare, I will not proceed at this time. My neurologist has declined to proceed with me to the next step and I therefore have no expectation of aftercare from that avenue. And so now, I will see if my GP is more amenable. He has always been a fighter against pig-headed bureaucracy; perhaps he will back me: as much as he can. I find out this coming Friday.

As I have said before, I am fortunate in being in a long term remission and therefore my case is not urgent, as compared to so many others. But how much longer must I put my most productive years on hold? I am only nine years from retirement. Must they too be spent pushing an elephant through the pinhole that is MS fatigue? Must every night be spent like a Mexican-Jumping-Bean on my bed, vibrating like a tuning fork, and kicking my wife's shin to bruises? Will my serotonin levels forever need (addicting) drug intervention? And so on and so on.... Is there no hope? Well, yes. There is hope--Now!

Though I accomplish so much in spite of this retched illness, I just want to feel stronger and more productive again, even if only some fraction of what (I am after all ten years older) I was before the curtain came down on my working life.

Is that too much to ask?


But back to the main point. It is always worth repeating.
    Be Prepared

    Be Proactive

    It is Your health!


Ora pro nobis,
Pax.
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Postby Johnson » Mon Nov 01, 2010 3:33 pm

Welcome to the forum, richardcampbell.

If you are successful in lining up after-care in Vancouver, please post any details here.

A number of Vancouverites have asked me about after-care, but I did not even bother looking. I did not take a stent and I have my own, "bush doctor" modalities. If something untoward should occur, I would go to the local ER and not even mention venoplasty, "MS", Polish doctors, Italian cars, nor ice cleaning machines. 'I feel a constriction in my throat! I am feeling weak! There's something in my neck, I feel like I am strangling!'. They would investigate (or send me to psych. evaluation), and I might even get a free venogram! Once they were in there, I would mention the two venoplasties I've had.

People need to give after care a lot more thought than I did though - especially if they take a stent. At the very least, understand INR and basic blood chemistry. Understand any drugs that are taken now, and any prescribed after the procedure.

Bonne Chance with your procedure!
My name is not really Johnson. MSed up since 1993
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Postby dlb » Tue Nov 02, 2010 12:58 pm

Hello RC,

I could echo the very same concerns. I too am on the cusp of obtaining treatment. I have found a remarkable GP who is not only interested in CCSVI but seemed very well versed on the topic when my husband & I sat down with her. She has given me a full page of blood work, that she wants me to do prior to my procedure - baseline for my file with her. I have also spoken with my neuro. Although she is not really in favor of me seeking treatment, she is following up with her patients that have sought treatment & wants to see me in 2 months post procedure. This kind of help is out there and I am completely in agreement with you - we need to have all that in place before we seek treatment. I made a choice to stay within N. America as that is as local as I can be. I am concerned about the high rate of re-stenosis and obtaining follow-up care. I'm also wrestling with the issue of: if it isn't really broke - why fix it... because I have no all-day/every day mobility/disability issues. I do have headaches (since long before an MS dx). I do have cold hands /feet (since long before MS dx). I have problems when I'm lying down with tingling hands (again since long before MS dx), but that has greatly improved with IBT. I also have less headaches since IBT! So I wrestle with my decision b/c of the people who have posted that they are worse off after the procedure. I envy the true pioneers who foraged ahead with complete trust that this procedure is the answer and did not have to sort thru the negative results & I can completely understand the fear that those true pioneers must have felt in taking the plunge a year or so ago before so much more was known! I also fear that I may have an exacerbation that will leave me with an issue that may have been prevented had I not chose to wait..... It is very difficult but it is wonderful to have HOPE for a much better future, isn't it.
Best wishes for your procedure & in finding a terrific GP for follow-up - they are out there!
Deb
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Postby richardcampbell » Tue Nov 02, 2010 9:32 pm

dlb wrote:Hello RC,

I could echo the very same concerns. I too am on the cusp of obtaining treatment. I have found a remarkable GP who is not only interested in CCSVI but seemed very well versed on the topic when my husband & I sat down with her. She has given me a full page of blood work, that she wants me to do prior to my procedure - baseline for my file with her. I have also spoken with my neuro. Although she is not really in favor of me seeking treatment, she is following up with her patients that have sought treatment & wants to see me in 2 months post procedure. This kind of help is out there and I am completely in agreement with you - we need to have all that in place before we seek treatment. I made a choice to stay within N. America as that is as local as I can be.

You are fortunate in having the support in place


I am concerned about the high rate of re-stenosis and obtaining follow-up care.


I am not sure where you are and I do not presume to know your finances, but I can add two words of encouragement:
1) another IRB has been issued for the combination of test, quantify, procedure, and post-test, this time on the east coast of the States (posted on FB: CCSVI at UBC).
2) re-stenosis happens, but that is a bridge we all may have to cross, but not until and if it happens.

I'm also wrestling with the issue of: if it isn't really broke - why fix it... because I have no all-day/every day mobility/disability issues. I do have headaches (since long before an MS dx). I do have cold hands /feet (since long before MS dx). I have problems when I'm lying down with tingling hands (again since long before MS dx), but that has greatly improved with IBT. I also have less headaches since IBT! So I wrestle with my decision b/c of the people who have posted that they are worse off after the procedure.


I also struggle with this but I have since found out that the effectiveness of the procedure seems to be an inverse function of how long and how much damage has been done. You have had MS for a long time based on those symptoms you mention as predating your diagnosis. Do you have the fatigue, the times when your get up and go just left the room. Are you living the way you did 5 or 10 years ago? If not, can it be the MS?

IBT ought to have some effect. If you remember L'Hermitte's sign, that electric tingle when you drop you chin to your chest (if you had it) is caused by stretching the spinal cord and pressing against the inside of the vertebral column. IBT would, I would think, relieve some of the lateral pressure on the cord and reduce longitudinal tension too. I have also seen that other things can improve without actually dealing with the underlying problems.

[...]
I also fear that I may have an exacerbation that will leave me with an issue that may have been prevented had I not chose to wait [...]Deb


As I said before, a bridge not yet come to should not be a road block; it may not come to pass.

You are entitled as much as any other and the sooner you act, the more effective the procedure is likely to be.

Notwithstanding any improvements or perceived worthiness of others, your life, lived to its fullest, matters too.

Ora Pro Nobis
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Postby PCakes » Tue Nov 02, 2010 9:58 pm

dlb wrote:Best wishes for your procedure & in finding a terrific GP for follow-up - they are out there!
Deb


I agree.. my GP is also very interested and will supply pre and post care to the best of her ability. She is asking for those that travel to come back with as much information as possible. Details of surgery, any available images, prescription details, contact info for the attending surgeon, etc.

Good luck!!
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Postby dlb » Tue Nov 02, 2010 10:11 pm

PCakes wrote:
I agree.. my GP is also very interested and will supply pre and post care to the best of her ability. She is asking for those that travel to come back with as much information as possible. Details of surgery, any available images, prescription details, contact info for the attending surgeon, etc.

Good luck!!


PCakes.... Is that a dachshund you are walking?? LOL

It is so refreshing to find a doctor who has an interest. I asked my husband to come along (his doctor too) b/c I expected a bit of a battle but I knew I needed this person on my team. I was shocked to find someone quite excited by my visit. My husband actually suspected she had a patient that had already gone for treatment & asked her but she hadn't yet... Some interested but no one had gone yet. She was jotting down information as we talked and gratefully accepted the information that I had taken to back up the CCSVI theory. She was pretty knowledgeable about it, so that indicates her interest, I thought.

Best Wishes to you as well - I'll be watching for your procedure story!
Deb
richardcampbell wrote:
You have had MS for a long time based on those symptoms you mention as predating your diagnosis. Do you have the fatigue, the times when your get up and go just left the room. Are you living the way you did 5 or 10 years ago? If not, can it be the MS?



Thanks for your response, Richard.

I'm not sure - I tend to think that I may have had CCSVI before I had MS.... maybe just the way I see this, tho'?? I was dx'd in July, 2005 and when I reviewed my MRI with my neuro at that time, she stated that she was confident by my scans that it was very new disease activity. I do remember her sticking to that story when I questioned this or that, which I had pondered now that I had a diagnosis... saying that she had a level of confidence that there had been no long term disease activity present (or something to that effect - in neuro terms of course!!). I have pondered on this over the past year, but I'm thinking that often warm hands/feet and less headaches are benefits people often report post procedure. That's why I suspect that I had blockages early in life but not necessarily MS until my mid forties... I wonder when the answers will be found out!
D
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Postby PCakes » Wed Nov 03, 2010 8:16 am

dlb wrote:PCakes.... Is that a dachshund you are walking?? LOL

Best Wishes to you as well - I'll be watching for your procedure story!
Deb

Hi Deb,
Thaz me'n my portie walking 'till we get there'. Dach's are great too! :)
Thank you, I'm on a wait list but I sure hope Canada steps up first.
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