9 patient evaluations for CCSVI Chronic Cerebro-Spinal Venous Insufficiency Therapy

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Thekla
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Thekla
Sex: F
Data Quality: 2 stars
Sensation: Moderate
Overall: Mild
Cognition: none
Vision: none
Speech: none
Swallowing: none
Upper limb: moderate
Walking: severe
I am: g
I have:
MS

See Thekla's full CCSVI Chronic Cerebro-Spinal Venous Insufficiency Therapy history

Feb 6, 2015 (Started Aug 15, 2011)

  • Effectiveness
    Major (for Cognitive decline)
  • side effects
    Mild (Pain from stent placement, pain from stent placement)
  • Adherence
    Always
  • Burden
    A little hard to take
Dosage: As needed
Advice & Tips: Treatment made a huge difference again. I feel alive and motivated, whereas I felt drugged before. I have my brain back!

  • 1 helpful mark
Robinoco
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Robinoco
Data Quality: 0 stars
Sensation: Unreported
Overall: Unreported
Cognition: unreported
Vision: unreported
Speech: unreported
Swallowing: unreported
Upper limb: unreported
Walking: unreported
I am: g
I have:
MS

See Robinoco's full CCSVI Chronic Cerebro-Spinal Venous Insufficiency Therapy history

May 26, 2012 (Started Jul 01, 2011)

  • Effectiveness
    Major (for Multiple Sclerosis)
  • side effects
    Moderate (Soreness)
  • Adherence
    Never taken as prescribed
  • Burden
    Not at all hard to take
Cost: $200+ monthly

May 7, 2012 (Started Jul 01, 2011)

  • Effectiveness
    Slight (for Multiple Sclerosis)
  • side effects
    Mild (Soreness)
  • Adherence
    Always
  • Burden
    Somewhat hard to take
Dosage: Yearly
Cost: $200+ monthly

  • 0 helpful marks
Thekla
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Thekla
Sex: F
Data Quality: 2 stars
Sensation: Moderate
Overall: Mild
Cognition: none
Vision: none
Speech: none
Swallowing: none
Upper limb: moderate
Walking: severe
I am: g
I have:
MS

See Thekla's full CCSVI Chronic Cerebro-Spinal Venous Insufficiency Therapy history

Jul 23, 2011 (Started Aug 13, 2010)

  • Effectiveness
    Major (for help ms symptoms)
  • side effects
    None
  • Adherence
    Always
  • Burden
    A little hard to take
Dosage: As needed
Advice & Tips: This treatment totally eliminated cogfog and fatigue. My bladder function is dramatically improved, but not 100%. My spasticity is better. If my legs would work, I would be unstoppable, I don't 'feel' like I have ms anymore---my head feels normal. I can see improvements with physical therapy and expect to do better in the future. I was treated twice, the first time was not very thorough and missed major valvular blockages, so I went for a second round in NYC which cost $10,000 and was worth every penny.

  • 2 helpful marks
kcj1963
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kcj1963
Sex: M
Data Quality: 2 stars
Sensation: Moderate
Overall: Moderate
Cognition: moderate
Vision: mild
Speech: moderate
Swallowing: moderate
Upper limb: moderate
Walking: moderate
I am: n
I have:
MS

See kcj1963's full CCSVI Chronic Cerebro-Spinal Venous Insufficiency Therapy history

Apr 12, 2011 (Started Apr 12, 2011)

  • Effectiveness
    Moderate (for Multiple Sclerosis)
  • side effects
    Mild
  • Adherence
    Always
  • Burden
    A little hard to take
Dosage: One time
Advice & Tips: 4 days after i have more energy, my throat was sore, i'm warmer, i can feel a strong pulse in my limbs and neck, and my senses are heightened.. my balance, bowel and bladder, dizziness, tinnitus, sinusitis, left-sided numbness, and cognition have all improved some, but wanes back and forth depending on what i'm doing.. my legs still tingle when i'm sitting for too long..
Cost: < $25 monthly

  • 0 helpful marks
Irishb.com
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Irishb.com
Sex: M
Data Quality: 2 stars
Sensation: None
Overall: None
Cognition: none
Vision: none
Speech: none
Swallowing: none
Upper limb: none
Walking: none
I am: vg
I have:
MS

See Irishb.com's full CCSVI Chronic Cerebro-Spinal Venous Insufficiency Therapy history

Jan 29, 2011 (Started Jan 25, 2011)

  • Effectiveness
    Major (for Multiple Sclerosis)
  • side effects
    None
  • Adherence
    Always
  • Burden
    A little hard to take
Advice & Tips: Worth it, better balance, thinking, endurance, talking.
Cost: < $25 monthly

Jan 25, 2011 (Started Jan 25, 2011)

  • Effectiveness
    Major (for Multiple Sclerosis)
  • side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: One time
Cost: < $25 monthly

  • 1 helpful mark
jennikb
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jennikb
Sex: F
Data Quality: 2 stars
Bulbar: mild
Arms: severe
Chest: mild
Legs: severe
I am: n
I have:
ALS

See jennikb's full CCSVI Chronic Cerebro-Spinal Venous Insufficiency Therapy history

Dec 21, 2010 (Started Dec 21, 2010)

  • Effectiveness
    Moderate (for CCSVI (Chronic Cerebrospinal Venous Insufficiency))
  • side effects
    None
  • Adherence
    Always
  • Burden
    A little hard to take
Dosage: One time
Advice & Tips: Unusual for an ALS patient to go through such a procedure, typically reserved for MS. Before liberation treatement, I use to have low level headache almost every day with at least one major headache. Now I will on occassion get a headache. This improved my quality of life, and who knows pealed away one layer of the ALS disease.

  • 0 helpful marks
egbokmom
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egbokmom
Sex: F
Data Quality: 2 stars
Sensation: Moderate
Overall: Moderate
Cognition: moderate
Vision: moderate
Speech: moderate
Swallowing: moderate
Upper limb: moderate
Walking: severe
I am: vb
I have:
MS

See egbokmom's full CCSVI Chronic Cerebro-Spinal Venous Insufficiency Therapy history

Aug 18, 2010 (Started Aug 18, 2010)

  • Effectiveness
    Major (for CCSVI (Chronic Cerebrospinal Venous Insufficiency))
  • side effects
    Mild (Pain in lower back)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: One time
Advice & Tips: The unexpected benefit was I don't have a problem with hiccups. Otherwise, I had immediate energy and my legs are not spastic. My speech is faster and clearer and I taste things more intensely. I can lie with my legs totally straightened and I lift them higher. My equilibrium seems better.
Cost: < $25 monthly
Side effects: Pain in lower back

  • 5 helpful marks
duderock
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duderock
Sex: M
Data Quality: 3 stars
Sensation: Severe
Overall: Moderate
Cognition: moderate
Vision: mild
Speech: mild
Swallowing: mild
Upper limb: mild
Walking: severe
I am: b
I have:
MS

See duderock's full CCSVI Chronic Cerebro-Spinal Venous Insufficiency Therapy history

Jun 25, 2010 (Started Jun 25, 2010)

  • Effectiveness
    Major (for Multiple Sclerosis)
  • Effectiveness
    Major (for CCSVI (Chronic Cerebrospinal Venous Insufficiency))
  • side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: One time
Advice & Tips: Anyone who suffers from MS should look into this. Venous insufficeincy is not good for anyone. Contrary to what the MS society is saying, you owe it to yourself to find out if CCSVI affects you. When I first heard of this I was thinking, "OH no, another snake oil treatment". However, the more I researched and saw the benefits so many were experiencing, I took it upon myself to attempt getting a diagnosis and possible treatment. The MS society blocked my path every way they could, but through diligence and perseverance, and a lot of help from friends and family, I was finally able to satisfy my curiosity. Turns out I had severe stenosis in my left jugular, and several areas of stenosis in my azygos veins. I was lucky to find an interventional radiologist willing to help. After the procedure I felt good for the first time in years. I mean good. It is my belief that the MS society's and Pharmaceutical company's have a financially vested interest in keeping us sick and this treatment unavailable. Don't listen to them. Do your own research, find out if this is something you wish to pursue, and start asking for help.
Cost: $100-199 monthly

  • 17 helpful marks
SammyJo
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SammyJo
Sex: F
Data Quality: 0 stars
Sensation: None
Overall: None
Cognition: none
Vision: mild
Speech: none
Swallowing: none
Upper limb: none
Walking: moderate
I have:
MS

See SammyJo's full CCSVI Chronic Cerebro-Spinal Venous Insufficiency Therapy history

Oct 29, 2009 (Started Oct 29, 2009)

  • Effectiveness
    Major (for Jugular stenosis)
  • side effects
    Moderate (Sore shoulders for 3 months from stent procedure.)
  • Adherence
    Always
  • Burden
    Somewhat hard to take
Dosage: One time
Advice & Tips: Treated at Stanford by Dr. Dake; now beginning clinical trial early 2010. Left jugular was 95% blocked, right juggler 85% blocked, both at 100% open flow after stents. MS symptoms: Painful morning extensor spasms in calf muscles gone after 3 weeks. Night time leg contracture spasms stopped at 2 months. Now at 3 months, still have some tone/stiffness in legs, but abating. No more icy hands and feet. Urgency has lessened by 50%. Still walking with cane, but energy picking up, balance improving.
Cost: < $25 monthly
Side effects: Sore shoulders for 3 months from stent procedure.

  • 17 helpful marks
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Showing 9 of 9 patient evaluations for CCSVI Chronic Cerebro-Spinal Venous Insufficiency Therapy