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
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:
Huge difference in breathing pattern. Lots of air goes in effortlesslyUpdate, three days after:
Hypersensitivity is still there, but to a lesser extent
Huge difference in breathing pattern. Lots of air goes in effortlesslyUpdate 28 days after:
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
I still have some spasms while walking, but at a much lower degree than before
Update 70 days after:
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 XRUpdate 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 treatmenthttp://www.medpagetoday.com/MeetingCoverage/AAN/19594You can find more information about the liberation treatment and Zamboni research at
)01568-7/abstract/Info about how MS patients that already had the liberation treatment are doing: