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Chronic cerebrospinal venous insufficiency. Doppler sonography. Internal jugular vein.

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The data used for this study were collected prospectively between May and January , as part of a self-referred, fee-for-service program in MS patients. All patients provided signed informed consent for entry of their test results in a central research database. The database registry included MRI of the brain and neck, Doppler examination of the brain and neck, neurological examination, neuropsychological testing and blood draw for genetic testing.

This article is published under license to BioMed Central Ltd. Are you in the early stages of your research career? Take our survey! Chronic cerebrospinal venous insufficiency is not associated with cognitive impairment in multiple sclerosis. BMC Medicine 11 Abstract Background Chronic cerebrospinal venous insufficiency CCSVI has been reported in multiple sclerosis MS yet its significance in relation to cognitive function is undetermined.

Methods CCSVI was assessed using extra-cranial and trans-cranial Doppler sonography in MS patients 79 with relapsing-remitting, 23 with secondary-progressive and 7 with primary-progressive disease subtype. Results There were 64 Conclusions We find no evidence of an association between the presence and severity of CCSVI with cognitive impairment and depression in patients with MS. Participants The neuropsychological data were collected in a single-center, cross-sectional rater-blinded study that included patients with definite MS who were undergoing determination of CCSVI status.

Of the patients enrolled, 79 were diagnosed with relapsing-remitting, 23 with secondary-progressive, and 7 with primary-progressive disease subtype. While the pattern of cognitive impairment was the same as described in previous studies SDMT and BVMTR most sensitive , overall we found less impairment in this sample as compared to some previous studies using the same test battery [ 7 , 45 — 47 ]. Table 1 Demographic, clinical and neuropsychological characteristics in multiple sclerosis patients with positive and negative diagnosis of chronic cerebrospinal venous insufficiency CCSVI.

The median was represented by 26 patients achieving a score of 3. The direction of the effect was thus counter to expectation in that positive patients achieved a score of 9. Study disclosure The data used for this study were collected prospectively between May and January , as part of a self-referred, fee-for-service program in MS patients.

Annu Rev Neurosci. Frequency, patterns, and prediction. J Int Neuropsychol Soc. Mult Scler. Ann Neurol. J Neurol Neurosurg Psychiatry. Expert Rev Neurother. Nat Rev Neurol. Hyperbaric oxygen therapy HBOT involves breathing pure oxygen in a specially designed chamber. It is appropriate for deep sea divers who suffer pressure problems the "bends" after resurfacing. Some clinicians, particularly in the United Kingdom, speculate that some of the nerve damage in MS is caused by lack of oxygen.

The most positive reports have not been based on controlled studies, so their data cannot be interpreted. In , after an extensive literature search and analysis, the Cochrane Collaboration published a comprehensive review of the controlled studies—two positive and seven negative. The reviewers concluded:. We found no consistent evidence to confirm a beneficial effect of hyperbaric oxygen therapy for the treatment of multiple sclerosis and do not believe routine use is justified.

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The small number of analyses suggestive of benefit are isolated, difficult to ascribe with biological plausibility and would need to be confirmed in future well-designed trials. Such trials are not, in our view, justified by this review [8]. Prokarin also called Procarin is a skin cream that is administered using a patch that enables its ingredients to be absorbed.

The treatment is based on a hypothesis that involves histamine and dates back to the s. The primary promoter is Elaine DeLack, a nurse who "discovered" and patented a mixture of histamine and caffeine. In February , the journal Multiple Sclerosis published the results of a week study of MS patients in which 21 people took Prokarin, 5 took a placebo, and all participants were asked to limit their intake of caffeinated beverages to one cup of regular coffee per day. The authors concluded that Prokarin produced a "modest" lessening of fatigue [9].

The National Multiple Sclerosis Society advised that the study was difficult to interpret because the number of participants was small; the numbers in the Prokarin and placebo groups were very different; the fact that Prokarin contains caffeine might mix up the results; and other reasons [10]. The Society also warned that Prokarin lacks a scientifically plausible rationale and has not been proven to modify the course of the disease [11] and that while Prokarin does not apppear to be harmful, the level of benefit does ot justiy its very high cost [11].

Prokarin proponents are promoting this study as showing that Prokarin "works. In my opinion, it is a poor investment and any marketing that arouses hope that it will influence the course of MS is both unethical and may be illegal.

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If you encounter a pharmacist selling Prokarin, ask the state pharmacy board to investigate what claims are being made. The FDA has warned that "liberation therapy" also called liberation procdure is unproven and unsafe. The procedure, in which balloon angioplasty devices or stents are used to widen narrowed veins in the chest and neck, is based on the unproven idea that a narrowing of veins in the neck and chest chronic cerebrospinal venous insufficiency may cause MS or contribute its progression by impairing blood drainage from the brain and upper spinal cord.

The FDA warning was generated by reports of death, stroke, detachment and migration of the stents, damage to the treated vein, blood clots, cranial nerve damage and abdominal bleeding associated with the "liberation" procedure [12]. In , Canadian researchers reported on two studies that should end the use of liberation therapy. In one, British Columbia residents who self-reported having had venoplasty were interviewed and followed for up to 24 months post-therapy using standardized structured questionnaires.

However, this improvement was not maintained over time. In addition, The other study was a controlled experiment in which participants had a catheter inserted into their blocked veins, but only 49 had their vessel walls pushed out by inflating a small balloon. A year later brain imaging, standard assessments of MS symptoms, and the patients' own self-assessments were the same in both groups [14]. Aetna has issued a clinical policy bulletin that lists covered and not-covered MS treatments.

Aetna's list also includes other methods that are undergoing clinical trials and may have some therapeutic potential.

Multiple Sclerosis and Wellness

Methods to Avoid The methods considered implausible or ineffective are listed below. I believe these methods should be avoided: Adequately tested but ineffective in influencing the course of MS Aspirin and sodium salicylate; colchicine for immune modulation ; thymectomy removal of the thymus gland ; transfer factor; myelin basic protein; hyperbaric oxygen HBO. Coral Calcium "Coral calcium" is a dietary supplement said to be derived from "remnants of living coral that have fallen from coral reefs, as a result of wave action or other natural processes.

Hydrogen Peroxide Practitioners who advocate this type of therapy argue that diseases develop in people whose bodies lack sufficient oxygen. The reviewers concluded: We found no consistent evidence to confirm a beneficial effect of hyperbaric oxygen therapy for the treatment of multiple sclerosis and do not believe routine use is justified. Prokarin Prokarin also called Procarin is a skin cream that is administered using a patch that enables its ingredients to be absorbed.

Donna, no procedure. Sharon described how she felt buoyed by the excitement of others. Sherry, procedure. However, two participants explained that after receiving the procedure, they felt obligated to demonstrate improvements. Five participants who had undergone the procedure identified social media, blogs, and Internet sites as means to receive encouragement and compare their own situation to the situations of others with MS.

Tina described how she felt disconnected from the lives of others who did not have MS. She believed that people without MS could not empathize with her MS symptoms. Anecdotal stories from Internet sites and Facebook groups became important sources of information to locate the best surgery hospitals, compare hotels, and to connect with taxi drivers and medical tourism companies.

Social media also became a tool to stay connected with people the participants met while traveling abroad to receive the procedure. The MS liberation-support network expanded as participants who had undergone the procedure found themselves providing advice to strangers who telephoned them. Eleven participants reported that their decisions about the liberation procedure were strongly influenced by the opinions of family and friends. Jennifer felt that she was required to defend her position not to undergo the procedure against her family, who felt she had a responsibility to act on this potential cure:.

They were talking about this cure and how people were able to walk…. I did it to get people to shut up and leave me alone. Among seven of the interviewees, their immediate family members took primary responsibility to organize the logistics and funding for the trip abroad. Participants described being moved by subsequent local television, newspaper, and radio accounts. Most participants both those who decided to undergo the procedure and those who did not felt that the CCSVI theory made sense to them, and following the W5 program they immediately wanted more information:.

It seemed to me from what he [Dr Zamboni] was saying that he was having good results, so I was kind of intrigued by it. Tina, no procedure. Following the W5 program, local radio, television, and newspapers featured people with MS who were either preparing to undergo the procedure or had already received it.

Some participants who were considering the procedure felt that the situations described in local reports paralleled their own situations. The fact that the subjects of the stories were local people strengthened the validity of the reported results from their points of view.

Participants in the study visited the MS clinic at least yearly and some more often. Four participants stated that they did not discuss the procedure with anyone from their health care team. Six of the seven participants who had undergone the procedure reported that they received a neutral response from either their family physician or MS neurologist, while two perceived that the message they received from their family physician was clearly affirmative.

None of the participants described interaction with researchers or scientists regarding the procedure. Matthew, procedure. Five participants recounted that they felt frustrated and confused about the information received by members of their health care team regarding the liberation procedure. You decide. All of the participants who had undergone the liberation procedure initially contacted either the hospital that offered the procedure directly or a medical tourism company.

They felt that the interaction with hospital or company staff by email or by phone was overwhelmingly helpful and positive, and as a result they found the process simple and efficient.

Everything is there. In fact, she described how her husband was offered and received discounted cosmetic surgery during the trip. None of the participants who had undergone the procedure described concern about risks associated with the procedure. Well, if the veins are blocked and they release that, people are going to feel better.

Barbara, no procedure. No one should have blockages. Brittany, procedure. Eight participants reported that financial constraints were a major barrier in the decision to have the procedure. Six of the eight participants who reported cost as their major initial hesitating factor were supported by community fundraisers, but two participants, Anne and Barbara, did not want to participate in fundraisers, and wished to keep their diagnoses private.

William, no procedure. Participants felt that Canadian regulations and evidence-informed health care assured them security, and that submitting to a new procedure in a foreign country increased their health risk. Participants were also concerned about the qualifications of surgeons carrying out the procedure and the risk of insufficient or incorrect information due to a language barrier. Jennifer, no procedure.

Donna described a particularly strong trust in her MS nurse, with whom she regularly discussed new information over the telephone. All four decided against the procedure at least partly based on the information gleaned from those conversations:. Not all participants followed the advice of their health care providers. Two participants discussed undergoing the liberation procedure against the advice of their doctors:. Like, his jaw dropped when I said I was going.

Robert, procedure.

Seven participants reported that traveling abroad was a disincentive when making decisions on the procedure. For those who had undergone the procedure, they had been able to ameliorate their concerns by contacting and receiving advice from others who had traveled abroad.

They also were assisted with planning by the hospital or the medical tourism company.

Multiple Sclerosis&Wellness

Two participants felt that because of MS-related disability, they were physically unable to travel out of country to receive the procedure:. Even if I have tons of money, the traveling would be really hard to do. Anne, no procedure. Seven participants two of whom decided to have the procedure questioned the rationale underpinning the theory of blocked veins and MS. They also reported that they doubted the apparent improvements seen in MS symptoms described by television, radio, and newspaper reports.

These participants also had some postsecondary education, and clearly articulated both sides of the issue during their interview:. Participants felt that some of the improvements attributed to the liberation procedure presented in television, radio, and newspaper reports could have been related to the variability of MS and even the placebo effect:. During the analysis, motivating factors were more numerous and more frequently mentioned than hesitating factors, resulting in an imbalance favoring the motivating factors Figure 1.

Most often, the hesitating factors that were absent among people with MS who had undergone the procedure and present in those who had decided against it were 1 out of alignment with a trusted source, and 2 puzzled by rationale. The purpose of this study was to explore liberation-procedure decision making among patients with MS. To our knowledge, this is the first report to focus specifically on the motivating and hesitating factors that play a role in liberation-procedure decision making from the perspective of people with MS.

We found that hesitating factors that caused participants to pause or reconsider the procedure were outweighed by motivating factors. Health care professionals may have an important role to play in the event of a new controversial therapy for MS or other chronic diseases. Most participants in our study valued the advice of health care professionals when considering the liberation procedure, but were also seeking more definitive opinions than they received.

It was clear that not all participants were able to evaluate critically all aspects of the liberation procedure, and in some cases they underestimated the risks and overestimated the potential benefits. Shared decision making has been described as an ideal model to navigate choices where the benefit of a particular treatment is uncertain. In response, participants sought out other sources of health information through online groups, websites, and peers, in order to make their health decisions.

More in Multiple Sclerosis

According to one study, people with MS cite mass media, such as the Internet, as their first source of health information, but also most often cite their physician as being their most trusted source. They suggested that although people with MS are often highly knowledgeable about their disease, most of the evidence regarding MS-related treatments is ambiguous, and requires both successful interaction with health care professionals and the ability to analyze evidence critically.

Our findings highlight the importance of referring patients to health providers who are knowledgeable enough to offer expert advice. Although most participants cited the W5 national television program as their first introduction to CCSVI theory, they described the coverage of others with MS in their local area and the comparison to their own situations as a major impetus to undergo the procedure. The message that people with MS received was that a cure had been found, and it was up to them to act on it.

We noticed that for participants who seemed to have weaker analytical skills and poorer relationships with their health care teams, the media and Internet network became the trusted source that outweighed any advice provided by health professionals.