Liberation Treatment

Information and discussion about this treatment

Liberation Treatment

Postby Rox » Sat Mar 20, 2010 7:33 am

There is an experimental treatment known as the 'liberation treatment' for MS patients that has relieved their symptoms and which could potentially apply to TM patients.

I had this treatment done in March 2010 and I'm already seeing improvements.

I was diagnosed TM in Dec 2008. I stopped having improvements in my neuro condition a month after being diagnosed with TM. I was left with:

Symptoms before liberation treatment
Heavy fatigue
Hypersensitivity along left arm, especially wrist
I have to wear a bandage around the wrist to protect the sensitive area
Daily migraines (quite strong, affecting only left side)
Neck affected by the lhermitte sign
Severe tonic spasms (hands will curb and legs will get paralised because of electricity)
Can walk but only at very slow speed, otherwise I get strong spasms
Unable to run. Three quick steps and I'm with spasms all over
Cannot jump or dance as it triggers very strong spasms
Have vibrations in legs
Taking Tegretol XR 400mg + Lamotrigine 200mg


I came across the research of Professor Zamboni who argues that blocked veins in the neck and upper chest could lead to neurological conditions, even MS. In his studies, he has found that about 90% of MS patients have blocked veins (stenosis), a now recognised medical condition called Chronic cerebro-spinal venous insufficiency (CCSVI) .

Zamboni et al (2009, J Vascular Surgery) report that 65 MS patients had blockages in their veins (CCSVI) which were removed with a balloon angioplasty. A procedure now known as the liberation treatment. These patients improved in their MS symptoms (motor and sensory) and cut by half their chance of having a relapse. Other four similar clinical trials have been conducted, all with very similar results.

I wondered whether people with TM also had blocked veins, so had a venography in March 2010. To my surprise, two veins were found severely blocked: The internal left jugular vein(90% stenosis) and the azygous (100% stenosis). The veins blocked were the same ones that Zamboni found in his MS patients. I was diagnosed with CCSVI.

I had these blockages (stenosis) released with a balloon angioplasty using the same procedure that Zamboni reported. I had this treatment done in March. Here are my changes so far:

Update, right after the liberation treatment:
Migraines stopped
Huge difference in breathing pattern. Lots of air goes in effortlessly

Update, three days after:
No migraines
Less fatigue
Hypersensitivity is still there, but to a lesser extent
Huge difference in breathing pattern. Lots of air goes in effortlessly

Update 28 days after:
No migraines
Less fatigue
Further improvement in the hypersensitivity in my arm
I still have a band of sensitivity along the wrist but this has shrunk
I still feel the ease when breathing
Fewer spasms
I still have some spasms while walking, but at a much lower degree than before

Update 70 days after:

No migraines
Zero fatigue
I’m definitely back to my pre-TM energy level. I no longer feel fatigue or the need to
sleep more than 8 hours a day
My hypersensitivity has improved a bit more as well. I stopped using the bandage which protected my wrist
I still feel the ease when breathing
My spasm have reduced a bit further. I can now run for 50 meters without spasms.
I started reducing the dose of anti-seizure medication. I'm taking 200mg Tegretol XR

Update 77 days after:
Less spasms. Reduced medication even further
I'm taking Tegretol 100mg
I can run 150 meters without spasms.

Update 85 days after:
I can jump without spasms
Hypersensitivity in wrist and palm has reduced even more
Vibrations in legs are gone (like a guitar's cord)

Update 97 days after:
I have not had spasms in days.
Since yesterday I reduced the anti-seizure medication even further. I'm taking 50mg of Tegretol only. No other meds.
I can run short distances without spasms.
My hypersensitivity has reduced intensity and extent even further as well.

Update 100 days after:
I have not had spasms in days. So I stopped taking Tegretol today.

I have a complete and up-to-date medical file confirming that I have TM and not MS.

Interview to Zamboni, the father of the liberation treatment
http://www.medpagetoday.com/MeetingCoverage/AAN/19594

You can find more information about the liberation treatment and Zamboni research at:
http://liberation-treatment.com/
http://healingpowernow.com/
http://www.jvascsurg.org/article/S0741-5214(09)01568-7/abstract/

Info about how MS patients that already had the liberation treatment are doing:
http://www.thisisms.com/ftopict-8346.html
Last edited by Rox on Sun Jun 27, 2010 12:14 pm, edited 16 times in total.
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Re: Liberation Treatment a new hope for TM?

Postby marieke » Sat Mar 20, 2010 1:26 pm

It would not be the same as MS, as the veins that are blocked are the ones leading to the BRAIN and not the spinal cord.
As you know MS affects the brain and spinal cord, TM only affects the spinal cord.

What tells them that you have TM vs MS?
What did your brain MRI show?
What did the lumbar puncture show?

If you got relief of your symptoms from this procedure, then you must have had brain involvement to even a small extent.
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Re: Liberation Treatment a new hope for TM?

Postby Rox » Sun Mar 21, 2010 12:19 pm

I've had three MRI scans. One at the onset of TM, then another one six months later, and the last one a few weeks ago. All MRIs covered brain and spinal cord, these were done both with and without contrast.

The MRIs showed that I have inflammation in the spinal cord only in one place C3-C5. No other lesions whatsoever elsewhere. The lumbar puncture did not show any abnormality, no oligoclonal bands. My evoked potential tests were normal. My MRIs were seen by several neurologist at the Oxford Radcliffe Hospital, and all agreed that I have TM and definitely not MS.

The theory behind the 'liberation treatment' is that MS patients have blockages in the main veins coming out from the head and brain down to the heart. The blockages (stenoses) occurr in the upper chest, mainly in the internal yugular veins and the azygous vein. I've attached a figure showing the location of these veins and the percentage of MS patients who had these veins blocked in Zamboni's study.

These blockages cause blood to flow back to the brain causing accumulation of toxins, mainly iron. It is the accumulation of iron that triggers the inflammation response and the loss of myelin in MS patients. In other words, demyelination is not triggered by an autoimune problem but by a vascular one. I repeat this is a theory that it is currently being tested.

I already got responses from people running clinical trials to test this theory. They saw the possibility that this accumulation of iron can potentially trigger inflammation in TM patients as well. I have already posted them copies of my medical file for them to review my case. I will of course keep you posted with any news.
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Re: Liberation Treatment a new hope for TM?

Postby timu » Mon Mar 22, 2010 7:23 am

Rox,

Thank you for sharing, this sounds very interesting. It seems this may be a contributing factor for at least some TM patients.
Please keep us informed of your progress.
Where did you have this done?
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Re: Liberation Treatment a new hope for TM?

Postby Rox » Mon Mar 22, 2010 8:01 am

Hi timu,

I had both the diagnosis and angioplasty done in Athens, Greece. I was recommended an excellent and very experienced vascular surgeon there who has done successful angioplasties in MS patients.

I have family in Greece so did not have problems in terms of communication or accommodation.

I now realize that it is actually very easy to find out whether one has blocked veins or not. You just need to have a doppler exam (a sort of ultrasound), or as I did, a venography (catheter introduced via a vein in the leg). These tests are relatively non-invasive and not as expensive as MRI scans.

In case you find blocked veins, then I would recommend you talk to a good and experienced vascular surgeon familiar with the 'liberation treatment'. The surgeon might be able to guide you, from a vascular point of view, whether you chase the idea of having angioplasty done or wait until finding a clinical trial where you can participate.

My blockages were pretty bad so we did not have any hesitation in having the angioplasty done. I was told that removing the blockages might not have an impact on my neurological conditions, as the theory is still being tested. However, just a few days after I no longer have migraines and feel much much energetic.
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Re: Liberation Treatment a new hope for TM?

Postby marieke » Mon Mar 22, 2010 9:38 am

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Re: Liberation Treatment a new hope for TM?

Postby marieblond » Tue Mar 30, 2010 4:53 am

has anyone a direct wire to zambioni??

(who are "invisible persons" which are online??)
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Re: Liberation Treatment a new hope for TM?

Postby Rox » Tue Mar 30, 2010 3:30 pm

Hi Marie,

I got Zamboni's contact details from the article he published in the Journal of Vascular Surgery:
Prof. Paolo Zamboni, Director, Vascular Diseases Center, University of Ferrara, 44100 Ferrara, Italy (e-mail: zmp@unife.it).

I've read in an Italian newspaper that Zamboni has received hundreds of letters of MS patients requesting to have the liberation treatment. Understandably, since the treatment is still experimental, Zamboni is not offering the treatment to people who turn up and ask for it.

That was one of the main reasons why I approached a different doctor. After my successful treatment (in other words an angioplasty) I did write to Professor Zamboni sharing my experience as TM patient.

I do hope that the liberation treatment is soon made available to both MS and TM patients. The fatigue and headaches I used to have are a thing of the past, even though I had the treatment done only a couple of weeks ago.
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Re: Liberation Treatment a new hope for TM?

Postby marieblond » Wed Mar 31, 2010 1:25 am

hi rox! I am very proud on your courage.

I believe that numerous docs will hold on the old patterns in coop with pharma ind.

on 14th I will have an appointment at a phlebologist concerning my leg veins, which make trouble, there I will ask for a test and if I get a negative response I will ask my internist when I will have the check up for 2010... my husband has a private insurance and the veins are tested every year in this range.... He need not ask for doing so.
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Re: Liberation Treatment a new hope for TM?

Postby Rox » Thu May 06, 2010 7:56 am

Update after 7 weeks of angioplasty:

I've had further improvements in my TM symptoms since I had the liberation treatment. :D

*I have fewer spasms.
I no longer have trouble with spasms while sleeping or getting dressed.
I still have some spasms while walking, but at a much lower degree than before.

*I have not had migraines and I have not felt tired.

* I had a slight improvement in the hypersensitivity in my arm.
I still have a band of sensitivity along the wrist but this is smaller than the one I had before the liberation treatment.

As recommended by my vascular surgeon, I had a doppler scan (that is a kind of ultrasound) just to check that the unblocked vein in my neck was doing okay. The scan showed that my internal jugular vein was nice and juicy so no sign of re-blocking .

I will you posted with any more progress!
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Re: Liberation Treatment a new hope for TM?

Postby marieke » Thu May 06, 2010 12:53 pm

Not to undermine your recovery after having this treatment, BUT recovery of this type is also typical given the timeline of "normal" healing in many TM patients without this treatment.

You can't really say for sure if this treatment actually did anything or not. I am not saying it did not, just that it is not something that can be defined as making your symptoms improve. You got TM 14 months ago (or 14 months before liberation treatment)... most improvement in TM happens in the first 2 years in any case.

I am just playing "Devil's Advocate" in this case and people can choose to believe what they wish of course. BUT before people go out and spend thousands of dollars and get this done, they should be aware that more research must be done. The sample this doctor used was very small (under 30 people) and has yet to be properly proven effective in MS patients let alone TM patients who's brains are NOT affected.
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Re: Liberation Treatment a new hope for TM?

Postby Rox » Fri May 07, 2010 7:47 am

I was diagnosed TM in December 2008. I had minor improvements 3 weeks after, but since January 2009 my TM symptoms remained unchained. It is a bit coincidental that my symptoms started to improve 14 months after I got TM and precisely days after I had the liberation treatment.

I am not a neurologist or vascular surgeon to make bold statements whether the liberation treatment only applies to MS patients or not. Clinical trials are underway in the USA and Europe to test whether the liberation treatment can benefit patients with MS and other similar neurological conditions such as TM. These trials are including thousands of people not just dozens.

Sound research needs more evidence before dismissing whether this treatment works or not, and who can benefit from it. The emerging evidence from the Stanford trial and the study of Zamboni shows that people who have had the liberation treatment improved in their MS symptoms after years of having no improvement at all. My case, a TM patient, suggests that the liberation treatment might also benefit other kind of neurological conditions.

The liberation treatment cost me less than what I paid for my last MRI scan. The fact that the treatment is not overly expensive does not mean that everyone with TM should have it done. But I would advocate to have an open mind. If you are lucky enough to have a neurologist that is up-to-date with the (neuro and vascular) literature then discuss the possibility of having a Doppler exam or a venography. That is just to check if you have some veins blocked. The blockages do not occur in the brain, but along the neck and upper chest. The theory goes that these blockages lead to concentration of iron and toxins that trigger an autoimmune response. If you do find blocked viens then you have two choices. Wait to hear from the various clinical trials or find a top vascular surgeon to remove the blockages with an angioplasty. Your health insurance might well pay for some of the expenses.

As mentioned earlier, I will be more than happy :D to send anyone copies of my MRI scans and medical file for you to verify I have TM and not MS.
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Re: Liberation Treatment a new hope for TM?

Postby OnGodspath » Fri May 14, 2010 5:03 pm

I must say that I was thinking along the same lines as Marieke... that some of the improvements that you mention woud be common to recovery. But, I am also encouraged to go now and at least get the Doppler test done. I suffer with extreme fatigue and severe limitations to my activity. I would love to find a solution to that problem. Thank you for sharing your experience and information.
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Re: Liberation Treatment a new hope for TM?

Postby Rox » Fri May 14, 2010 11:31 pm

Hello there, :D

Best of luck with your doppler exam. Having done both the venography and doppler I recommend you having the venography instead. Of course first talk about the benefits and risk of each procedure with your doctor.

The doppler I had was pretty much a ultrasound of the veins in the neck. The X-ray specialist told me that he could not monitor the azyugous vein in the chest because the bone structure gets in the way. In the venography the surgeon goes in the actual veins with a catheter so it is a far more comprehensive test. It is not painful either. To my surprise the venography was even cheaper than the doppler. Neither of them are as expensive as an MRI.

I understand the difficulty in assessing whether the neurological improvement I've had is due to time or the liberation treatment. However, my breathing improved massively right away after I had the treatment. It is so difficult to describe it, but I feel like an oxygen tank is put in my nose, such a nice feeling.To be honest, I had never ever thought that I had problems with my breathing before.

I'm keeping informed other vascular surgeons doing this treatment about my progress. They have told me that it is normal to have seen such improvent in breathing. Some of their patients have noticed it too.

The strong headaches that I developed nine months after TM were completely gone as well. I wonder whether the improved breathing could be a player for having get rid of both the headaches and fatigue. These three factors (better breathing, no headaches, no fatigue) have made such massive difference in my life. The only thing I know is that these three factors changed immediately after I had the liberation treatment.

I'm now back to the Mediterrenean. I came back this time on holidays and to take to opportunity to see my vascular surgeon. I'll see him on Monday just to chat about what changes I've felt since I last saw him.

I'm also interested in cathing up with another patient of this surgeon. He is a person who has suffered MS for many years. He was pretty much unable to walk or turn his arms and head. Eight months after the liberation treatment his walking and mobility had improved. He was thinking of getting a driving license. I wonder how he is doing now.

Good luck :ymhug:
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Re: Liberation Treatment a new hope for TM?

Postby marieblond » Sat May 15, 2010 2:03 am

here it would only accepted as possible try, if there is described anywhere a connection between this treatment for MS AND TM.
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