MS patients hope controversial surgery will be approved in the US

By: Kelly Asmuth Email
By: Kelly Asmuth Email

GRAND JUNCTION, Colo. (KKCO) - Multiple Sclerosis patients across the country are hoping hospitals will approve a controversial operation aimed at stopping the disease from progressing. Many of those MS warriors live on the Western Slope.

One Grand Junction woman says she's won her fight against MS with the “Liberation Procedure.” However, some doctors are discounting it, leaving many MS sufferers searching for any way to have the surgery.

“I'm walking. My balance is incredible. There's no brain fog,” says MS patient Cynthia Kohls.

Those are words Kohls thought she'd never say after MS debilitated her ability to move several years ago.

“To see her everyday get a little worse, with no hope… The medications weren't working, and then the glimmer of hope was surgery,” says Cynthia’s husband, Jeff.

The surgery has been fronted by a doctor from Italy who deemed it the “Liberation Procedure.” It's basically a common angioplasty to unclog restricted veins, often found in MS patients.

“It's that blockage and that restriction that's causing the blood to not leave the brain,” says Cynthia. Cynthia and nine other patients had the controversial operation done in Mexico two weeks ago, hoping to get their blood flowing again. “There’s people that came in with canes and were walking when they left,” she says.

But the surgery isn't yet approved in America, for MS patients, that is.

“It's been done for years and years and years. If a normal person was to walk in, they would take them immediately. But with my diagnosis of MS, they won't give me the opportunity to see if I even do have blocked arteries,” says patient Cindy Hill, who lives in Clifton.

Cindy has fought MS for 11 years and is angered that some doctors are resisting the radical idea that MS could be a vascular problem (Chronic Cerebrospinal Venous Insufficiency, C.C.S.V.I.), and not caused by a malfunctioning immune system.

“They wanna have their own research, a 10-year study. She didn't have 10 years to wait. She was getting worse every day,” says Jeff of his wife.

But Cynthia says her costly operation literally drained the disease from her body. “I have my mobility back which is wonderful. But I have my hope back which is amazing,” she says.

“They are almost back to the way they used to be. I honestly can't remember what it used to be like...and I want that back,” says Cindy.

Some 400,000 other US Multiple Sclerosis patients share the same dream. Some are now traveling to other countries with thousands of dollars, hoping to make it a reality.

Cynthia is hosting a meet-andgreet Wednesday, July 7 at the Immaculate Heart of Mary Church (790 26 1/2 Road, Grand Junction) to share her experience with anyone interested. The event begins at 7 p.m.

To contact Cynthia, or to send a donation to her cause of raising money to fund her surgery and treatment for other MS patients, check out her blog by clicking on the link below under 'Related Links.'


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  • by Sandi Location: Wetaskiwin on Jul 14, 2010 at 12:13 PM
    To Amanda in RedDeer we live not to far apart where in Mexico did you find someone to perform this surgery and what have been the positive affects for you? Thanks Sandi
  • by LaVonne Location: NM on Jul 7, 2010 at 09:59 PM
    I just heard from my sister,Radona, she told me about meeting you tonight, I wish I could have been there, Cindy is also a friend of mine. I am on the list in AZ, hope my call comes soon.
  • by carol & scott schumacher Location: albany on Jul 6, 2010 at 09:07 PM
    Here is an announcement for a meeting of intervenntional radiologists :FROM DR. SCLAFANI IN BROOKLYN!!: "The Departments of Radiology andNeurology of SUNY Downstate Medical School are pleased to sponsor a symposium on the treatment of Chronic Cerebrospinal Venous Insufficiency (CCSVI) on Monday July 26 at 9am in the Alumni Hall of Downstate's Educational Building. We are pleased that Dr Fabrizio Salvi, Dr. Zamboni's neurologist partner, will attend this meeting. Also reporting their experience will be Tariq Sinan, the interventionalist who leads the Kuwaiti National Trial, Gary Siskin of the Albany Medical Centerand Salvatore JA Sclafani of Downstate. There will be no charge for registration. Please email me at CCSVISymposium@gmail.com if you plan to attend so that I can reserve you space." Contact the interventional radiology department at a university near you. skip the neurologists (unless they are open minded,) they are freaking out, and fail to read the phlebology papers.
  • by Amanda Location: Red Deer on Jul 6, 2010 at 04:09 AM
    I just returned from Mexico and like Cynthia has stated the people there are great and for the first time in 2-3 years I felt my toes and no PAIN!!!!!
  • by Jeff Kohls Location: Grand Junction on Jul 5, 2010 at 11:30 AM
    Hi Carol - It has been our experience, as with many MS sufferers, that this treatment is not available in the USA. We tried to get Cynthia treated here in the States. We were told by every facility that we contacted that they will not do the CCSVI treatment for an MS patient nor would they do the venogram to see if the veins were restricted. There were two USA facilities that were performing it and Cynthia was on the waiting list for both of them - one at Stanford University and one at University of Buffalo's Neuroimaging Analysis Center. Stanford University has stopped treatment because they were treating with stents and the stents migrated causing complications, and University of Buffalo is now only performing a double blind radiological study (not treatment) to evaluate the CCSVI and MS relationship. So if you know of facilities that are performing CCSVI procedures for MS treatment please share so that everyone who wants treatment can contact them. Thanks for your help and info
  • by Carol Location: Albany on Jul 4, 2010 at 11:59 PM
    Kelly and Jeff, I'm so happy for Cynthia. I believe medical tourism has an important role to play in helping patients get care. You both however are wrong about both the FDA and the legality and availability of treatment in the US . The FDA has not issued an opinion, nor would they, they do not decide what procedures are allowed. just drugs and devices. **This procedure is not restricted in ANY LEGAL WAY in the US!!!* It is a new idea and many hospitals are doin IRB review to be extra safeand diplomatic with neurologists who are used to controlling MS & are freaking out . They have been humiliated by these anatomical facts and remarkable-repeatable results. their world is turned upside down by CCSVI and they are telling their patients not to do it. but there are quite a few doctors in America treating patients, more announcing services every week. Interventional radiologists understand this disease & they deal with these kinds of problems every day in every hospital in north americ
  • by Marty Location: Pickering, Ont, Canada on Jul 4, 2010 at 11:02 PM
    Cynthia, thanks for your story! I hope the USA & Canada get Liberated soon. Ive got 2 stents in me from 2 heart attacks....no problems!!!!!!!!! My wife has lived with R/R MS since 1977. She had the Doppler test done 2 weeks ago......left side blocked & now we sit and wait!!! It drives me nuts that they need to do more research on CCSVI.......anyway good luck to you!!!!!!
  • by Denise Manley Location: MA on Jul 4, 2010 at 06:15 PM
    I've had the procedure and I too have regained balance and strength. I no longer require a cane or assistance to walk or go to the bathroom. My body is healing. MS patients deserve to be treated for venouse disease regardless of the pre-existing condition of MS. Let research figure it out but in the mean time MS patients have the right to be treated. This procedure has been used since the 70's and interventional radiologists are very familiar and comfortable with the sub vena cava system. The NMSS has lied to us for far too long! No more drugs that don't work, kill and make us worse, we demand our choice to have venouse disease treated and it's not the place for the NMSS to say different. They have no idea what MS is about, as a matter of fact it's still a theory that's its an autoimmune disease, why are they treating a theory? Why are they allowed to decided what theory MS patients must treat? I'm improving and getting well from a Secondary Progressive MS of 20 yrs
  • by Jeff Kohls Location: Grand Junction on Jul 4, 2010 at 05:59 PM
    Tess and Carol Schumacher - that is correct angioplasty is not illegal. However, currently in the USA people with MS can not get angioplasty treatment for CCSVI. There lies the controversy. The FDA has banned this type of treatment for MS, even though people all across the world are getting it and having great results. That is why we had to go to Mexico to have Cynthia treated. She had a venogram (a procedure of inserting a catheter in the vein to get a more accurate vein image through x-ray) of the neck that showed a restricted internal jugular vein. They performed angioplasty to try and open up the restriction, but her restriction was the result of a defective valve and not a stenosed vein. Therefore, she had surgery to remove the valve and get the blood flowing again. Thank-you for reading the article and commenting. Cynthia has a blog that we encourage everyone who is interested to read. www.iusedtorun.org. She has posted about her treatment experience and we are committed to helping anyone who wants to learn more about the CCSVI treatment for MS and how it has helped her improve her quality of life. It is interesting to note that with Cynthia, the ultrasound of the neck was inconclusive for any type of vein restriction. It was only through the venogram that a restriction was found. I suspect as more research is done they will find that all people with MS have vein restrictions and this will change how MS is treated.
  • by Kelly Asmuth Location: Grand Junction on Jul 4, 2010 at 05:49 PM
    Thank you for your interest in the story. Angioplasty is considered surgery (and likewise a procedure and/or operation). Amerimed Hospital in Mexico, which performed Cynthia Kohls’s operation, classified her operation as “out-patient surgery.” However, angioplasty is, indeed, not a very invasive surgery. Angioplasty is legal for many other kinds of patients, but it is not sanctioned for treating multiple sclerosis in the U.S. This is why some patients are traveling outside the U.S. to undergo the procedure. -Thank you, Kelly Asmuth.
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