Kun olen seurannut CCSVI:n vaiheita kesästä 2009, niin yksi seikka on pistänyt silmään ja se on ihmisten kertomat kokemukset operaatiosta. Internetin myötä nämä kokemukset ovat levinneet valtavalla voluumilla ja vauhdilla ympäri maapalloa. Kymmenissä maissa on muodostunut internet-yhteisöjä, missä aiheesta keskustellaan ja kokemuksia jaetaan. Suomessa tällaisena virtuaaliyhteisönä toimii "CCSVI finland", missä jäeniä on kaikkiaan n. 550. Ryhmässä laskimo-operaatiossa käyneet ovat kertoneet kokemuksistaan ja kokemuksien kirjo on laaja; osalla operaatio ei ole antanut näkyvää tulosta, osalle tullut ensin hyvät efektit - mitkä saattaneet kadota (mahdollisen uudelleen ahtauman myötä), joillekin on tullut kohtuullisen hyvät tulokset ja osalla operoiduista huikean hyvät vasteet - jopa niinkin että kaikki MS-oireet ovat kadonneet. New York:n tutkimusryhmää edustava prof. Gary Siskin on jossakin vaiheessa puhunut "1/3-säännöstä", eli he ovat havainneet seuraavaa: 1/3 = ei näkyvää vaikutusta, 1/3 positiivinen vaikutus ja 1/3 radikaalisen positiivinen efekti. (USA:n tuoreimmat 2 kliinistä pilottitutkimusta mittasivat hyviä vaikutuksia 55-75 % :lla operoiduista)
CCSVI tutkijat / lääkärit ovat todenneet että koko aihe on uusi ja vielä "lapsen kengissä", mikä on hyvä asia siinä mielessä että hoito ei ole vielä optimi. Todennäköisesti se tulee vielä jalostumaan ja tulevat tutkimukset antavat lisävastauksia mm.
- miksi hoitovasteet vaihtelevat?
- miten re-stenoosin mahdollisuus pienenisi?
- mikä on rautapitoisuuksien rooli asiassa?
- mikä vaikutus MS-taudin etenemiseen?
- mikä olisi paras tapa diagnosoida CCSV?
- onko osa oireista enemmänkin CCSVI-oireita?
- mikä olisi optimaalinen operaation jälkihoito?
- yhdistelmähoito? (lääke, fysioterapia, ravitsemus)
Operaatiosta hyötyneet kertovat useimmiten että hyödyt liittyvät yleensä seuraaviin oireissin, jotka mahdollisesti helpottuvat / jopa poistuvat:
- fatiikki
- "aivosumu"
- lämmönsieto
- tasapaino
- virtsarakon toiminta
- spastisuus
- kehon hallinta / voimaantuminen
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| 75-97 % MS-potilaista kärsii fatiikista |
Eroja tuntuu löytyvän siinäkin suhteessa että jollakin operaatio saattaa vaikuttaa selkeästi vain yhteen oireeseen ja jollakin toisella moneen oireeseen. Vaimoni eli Marjan kohdalla tapahtui tuo jälkimmäinen eli hänellä tilanne korjaantui radikaalisti ja kutakuinkin kaikki oireet korjaantuivat miltei kokonaan ja operaatiosta on kohta kulunut 2 vuotta. Tieteen tekijälle / MS-tutkijalle Marjan kokemus yksittäisesti tarkasteltuna on vain "anekdootti", tarina - mutta Marjalle ja meidän perheelle kuin lottovoitto.
Ihmisten kokemuksia on ollut paljon mediassa maailmalla, erityisesti Kanada-Usa suunnalla. Keräilin joitakin artikkeleita viimeisen puolen vuoden ajalta. Korostan että nämä niitä kokemuksia, missä toimenpidettä voidaan sanoa onnistuneeksi:
Perry back working following MS treatment
"It has been almost a year now since having this treatment and with the headaches alone being gone it was well worth it. I don't get as fatigued anymore and I definitely have a lot more energy. The numbness and tingling in my feet and hands have disappeared and I find that my balance is way better"
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| Dale Perry and his daughter Kenadee. Dale said that he is feeling well following his Liberation Treatment that he experienced in Poland in 2011. |
Doctors talk about controversial treatment for MS
"Carol Schumacher says she is finally able to walk without a cane and she believes her improvement is the result of a controversial treatment for multiple sclerosis"
'I got my life back' appeal panel told
"As the disease progressed, the 48-year-old single mother... was forced into a wheelchair, lost her driver's licence and suffered such agonizing pain in her legs that she told relatives she wished she could cut them off.
...
She now walks with the aid of two canes - painstakingly, but she walks. Her ice-cold hands and feet have warmed.
Colour has returned to her face. The pain in her legs has subsided. For the first time ever, an MRI showed no new MS lesions in her brain. She's even been able to regain her driver's licence.
"I got my life back," she said this week during a hearing at the Westin Hotel in Ottawa. "I was just going downhill. I think I have a chance now."
Liberation treatment restored mobility, says patient
"Her ability to walk has improved. Her legs no longer give out and she has stopped drifting to one side and walking into walls.
“I’ve never been so happy in my life since I had that surgery done,” said Mrs. Courtney. “I go to bed every night and thank God.”
Liberation liberating, say women
"Activities of daily living drained her of energy and she slept 15-16 hours a day. "The pain really exhausted me," she said.
Before liberation therapy, Huggins was suffering electric shock like pains in her arms up to 50 times a day, as well as severe mood swings and "brain fog," the inability to concentrate or focus for any length of time.
Shortly after the surgery, the pain in her arms and legs faded and her brain fog cleared.
Huggins said she is now "up with the sun in the morning" and is able to put in a full day without a nap. She sleeps seven hours a night and wakes up feeling refreshed.
"Having twice the hours in a day is like I'm catching up with my life," she said."
MS treatment a success for local woman
"I'm feeling pretty awesome," she said. "My fatigue is gone. I can shower by myself and do my hair by myself.
"I can do everything on my own."
Liberating Nicole
“My head feels unstuffed,” said Nicole to her mother shortly after the procedure. She also said her legs felt stronger. Nicole has been confined to a wheelchair and movement and touch are painful.
While it may not seem like a big deal to some, Nicole walked (with help) to the sand on the beach in California."
"I feel good, I feel really good. I don't have fatigue, I can withstand the heat here now."
Parry Sound MS sufferer gets good news
"Now, she is able to lift her shoulders up and down, her headaches have subsided, her leg spasms aren't as severe and when she's not feeling too hot, she can move her hands.
She can even manage to pull her arms back towards her body, if they are stretched outwards.
For Smith, it's a miracle she'd only ever dreamt of."
MP Leon Benoit creating awareness of MS treatment
"Since his operation Davies said he still limps when he walks, however he can walk three to four times longer and with a lot less difficulty."
Liberation procedure changes woman's life
Sask. MS patient has liberated in New York
"Within days of the liberation treatment, her energy came back and her some of her symptoms disappeared.
“I don’t have numbness in my hands and feet anymore,” she said. “I used to suffer from a lot of migraines I haven’t had any migraines since.”
MS treatment a succes for local woman
"I'm feeling pretty awesome," she said. "My fatigue is gone. I can shower by myself and do my hair by myself. I can do everything on my own."
“I’ve never been so happy in my life since I had that surgery done,” said Mrs. Courtney. “I go to bed every night and thank God.”
"Activities of daily living drained her of energy and she slept 15-16 hours a day. "The pain really exhausted me," she said.
Before liberation therapy, Huggins was suffering electric shock like pains in her arms up to 50 times a day, as well as severe mood swings and "brain fog," the inability to concentrate or focus for any length of time.
Shortly after the surgery, the pain in her arms and legs faded and her brain fog cleared.
Huggins said she is now "up with the sun in the morning" and is able to put in a full day without a nap. She sleeps seven hours a night and wakes up feeling refreshed.
"Having twice the hours in a day is like I'm catching up with my life," she said."
MS treatment a success for local woman
"I'm feeling pretty awesome," she said. "My fatigue is gone. I can shower by myself and do my hair by myself.
"I can do everything on my own."
Liberating Nicole
“My head feels unstuffed,” said Nicole to her mother shortly after the procedure. She also said her legs felt stronger. Nicole has been confined to a wheelchair and movement and touch are painful.
While it may not seem like a big deal to some, Nicole walked (with help) to the sand on the beach in California."
"I feel good, I feel really good. I don't have fatigue, I can withstand the heat here now."
Parry Sound MS sufferer gets good news
"Now, she is able to lift her shoulders up and down, her headaches have subsided, her leg spasms aren't as severe and when she's not feeling too hot, she can move her hands.
She can even manage to pull her arms back towards her body, if they are stretched outwards.
For Smith, it's a miracle she'd only ever dreamt of."
MP Leon Benoit creating awareness of MS treatment
"Since his operation Davies said he still limps when he walks, however he can walk three to four times longer and with a lot less difficulty."
Liberation procedure changes woman's life
“I have more energy, I’m not as tired,” said Murray.."
Sask. MS patient has liberated in New York
"Within days of the liberation treatment, her energy came back and her some of her symptoms disappeared.
“I don’t have numbness in my hands and feet anymore,” she said. “I used to suffer from a lot of migraines I haven’t had any migraines since.”
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| Anna Tessier travelled to NY for liberation treatment for her MS |
MS treatment a succes for local woman
"I'm feeling pretty awesome," she said. "My fatigue is gone. I can shower by myself and do my hair by myself. I can do everything on my own."
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| CCSVI ihmisiä, operoituja, lääkäreitä, tutkijoita |
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