Viewing 14 posts - 1 through 14 (of 14 total)
  • #73286
    STS/Vecttor Treatment

    I have attempted sending this via message to Kristina a week ago but didn’t get any response (keep on checking as the email notifications don’t seem to work!) so thought i’d try posting here instead.

    I have stumbled over a new treatment in the US (heard via facebook of all places) which seems to offer alot of potential in helping maintain/improve muscle function in Duchenne and Becker patients (and i suspect other forms of MD). It is a treatment rather than cure though but i thought i would draw attention to it as i’m very excited by this.

    There’s a facebook group called Defying Muscular Dystrophy ( http://www.facebook.com/pages/Defying-Muscular-Dystrophy/130631290315029 ) setup by David and Todd who like me have Becker’s MD and who have recently had this STS/Vecttor treatment in Texas at Corpus Christi university from Dr Rhodes and it appears to have made a big difference to them. They are his first BMD patients i believe but other’s with Duchenne seem to be benefitting…including 6 children from the UK with one uk child there at the moment. There are other facebook groups too of similar miraculous stories from duchenne patients.

    As i understand the treatment is something usually used to treat pain through electrodes but Dr Rhodes Vecttor machine is unique in the way it works and he has used it for treatmant of many other problems.

    Relevant link to Dr Rhodes website http://www.paindefeat.com/wiki/PDFT/HomePage though there doesn’t appear to be a great deal of info i’m afraid.

    I’m doubtful if there is any similar treatment or research in the UK (i haven’t come across any so far). I asked in my PM if Kristina could find out more about this..but anyone at MDC who can find out more i’d be grateful.

    This is the most hopeful treatment i’ve seen for a long time and something i am seriously considering at some point ..though i can’t currently afford it and would need to fundraise to get it. I was certainly very excited when i heard about it as it offers hope that just maybe i can prolong ending up in a wheelchair.

    I’m interested to hear what others think about this treatment or those who have benefitted already from this treatment.

    Thanks

    andyb
    Participant
    Posts: 22
    Joined: 24/09/2010
    #77107
    Re: STS/Vecttor Treatment

    Hi andyb,

    I’m sorry I didn’t see your message, I’m still getting used to how the forum works! I’ll be sure to check my personal messages regularly from now on. The STS/Vecttor treatment in Texas is a controversal issue and probably worth opening up the forum for discussion here (but also feel free to send me another personal message in the future).

    There isn’t enough information available for me to pass judgment on STS. There hasn’t been any clinical trials to objectively measure if it does work and I am concerned by how expensive it is!

    Parent Project Muscular Dystrophy in the US has prepared a statement that you can read here: http://www.parentprojectmd.org/site/DocServer/Oct_10_PPMD_Comments_on_Unproven_Therapies.pdf?docID=10261

    Also, on their forum there has been a lot of debate:
    http://community.parentprojectmd.org/forum/topics/dr-rhodes-duchenne-sts?commentId=1187424%3AComment%3A85523

    Perhaps we can stimulate some discussion on this topic. Has anyone on the forum been to Texas to try the STS?

    Kristina.

    kelvidge
    Participant
    Posts: 113
    Joined: 07/09/2010
    #77108
    Re: STS/Vecttor Treatment

    Thanks for your reply and links..no worries the forum is meant to email you when there’s PMs and new messages on posts but i never seem to get them.

    The link i posted before (http://www.paindefeat.com/wiki/PDFT/HomePage) has been updated since i last looked and has an entry for October 24th answering the questions posed by PPMD in your link. So a little bit more information has become available. I will have a look at the forum you’ve linked to when i get a chance.

    I’m not intending to remortage the house to pay for this treatment and fly out to Texas just yet..though it is very easy to get excited by anything that offers a sniff of hope! I will be keeping an eye on it though and seeing how things pan out with it. Would be nice if it does help but the cost is somewhat prohibitive right now and i can’t see NHS funding it at that cost with all the cuts in government spending going on!

    Beyond the obvious expense, it concerns me the effect of the treatment on the rest of the body. I’ve had time to think about this and discuss with family and one of our biggest concerns is if the treatment has any effect on heart and lung function. It is already known that complications of dilated cardiomyopathy is more of a problem in Becker’s patients than Duchenne patients because Becker patients tend to be that much more physcially active. If this treatment stimulates the circulation in my mind that means more strain is being placed on the heart and could possibly accelerate the onset of heart problems. And if the treatment does increase mobility for Duchenne patient’s could that then mean dilated cardiomyopathy becomes more of an issue for Duchenne patients? I don’t think anyone can answer yet. Also increased mobility/activity could mean adverse effects on lung function in my mind. If information and research on the treatment were more forthcoming I’d be much more tempted by it but until then i’m a bit wary. I think MD patients need to have a suitable team of medical professionals behind them to constantly monitor the effects of the treatments with more regular checkups and test such as echocardiograms (to detect cardiomyopathy) etc…and that fits in with MDC campaigning for better healthcare for MD patients.

    From observing a couple of facebook groups setup by those who are using this treatment it does seem somewhat miraculous. Perhaps to good to be true? I think the jury is out until more substantiated evidence backed by research is provided..though controversial treatments are less likely to get funding in the first place especially in the current financial climate.

    I think we’ll just have to wait and see and observe what happens to those brave enough to stump up enough cash to get the treatment. If the treatment does help without problems then i’m sure it will be with us soon enough by some means! Ideally we need to find cures which is clearly what alot of the research funding is aimed at – hopefully we’re not too far off!

    Andy

    andyb
    Participant
    Posts: 22
    Joined: 24/09/2010
    #77109
    Re: STS/Vecttor Treatment

    Hi Andy,

    Yes you are right we need more scientific evidence for this. If it is so miraculous I’m surprised that there hasn’t been some proper research into it.

    With regard to developing heart complications if you are more active, the experts are saying the opposite. Keeping active with regular gentle exercise can help to keep the heart (and the muscles) healthy for longer. There is quite a lot of research going into exercise for muscle conditions as it seems to be quite effective. As always, with the proper medical supervision and regular heart check-ups. As you say, our campaigns team is working to improve these services. I think the reason Becker patients are susceptible to heart complications is that they tend to live longer so there is time for the problems to manifest. Young men with Duchenne also develop cardiomyopathy.

    Great to chat to with you on the forum about these issues!
    Kristina.

    kelvidge
    Participant
    Posts: 113
    Joined: 07/09/2010
    #77110
    Re: STS/Vecttor Treatment

    Hi,

    Thought i’d follow up with a link to a bit more info on this from Parent Project MD via Sharon Hesterlee (Senior Director Research and Advocacy at PPMD) on her blog discussing this treatment and the issues/frustrations faced by charities in deciding whether to fund research/clinical studies or not.

    See http://community.parentprojectmd.org/profiles/blogs/dr-rhodes-sts

    According to the article she is in London next week for an Action Duchenne meeting and hoping to meet UK families who’ve used this treatment..maybe a good opportunity for someone at MDC , like yourself Kristina, to find out more/tag along?

    As discussed in the link, the cost to carry out a clinical study and other research into this treatment is clearly quite high and without objective evidence to justify it the cost is obviously a high risk one .

    Just an idea to float about:

    With a bit more evidence provided from a pilot study could the cost of such research be somehow jointly funded across several different MD charities by joining forces (like MDC and PPMD and others across the globe) to dilute the cost and risk between all involved. There’s already coordination between researchers globally sharing information …a shared funding pot takes it further and could be applied to other research. Of course the majority of charity funding has to be ploughed towards a cure rather than a treatment … but then again looking into treatments such as this might reveal info leading to cures by not leaving any stones unturned.

    Maybe MDC getting involved in a pilot study of those in the UK that have received this treatment would be a starting point to assess if it’s a treatment worth researching?

    Andy

    andyb
    Participant
    Posts: 22
    Joined: 24/09/2010
    #77111
    Re: STS/Vecttor Treatment

    Hi Andy,

    I’m going to discuss this with the rest of the research team and get back to you. Just wanted to let you know I’m not ignoring your good suggestions.

    Kristina.

    kelvidge
    Participant
    Posts: 113
    Joined: 07/09/2010
    #77112
    Re: STS/Vecttor Treatment

    Hi Andy,

    Sorry for the delay. I have spoken to the research team and we thank you for your good suggestions. It would be great if we could get a pilot trial off the ground to determine once and for all if the STS/Vecttor treatment is effective, how it compares to other similar therapies and if it is worth patients spending their money on. We plan to mention this to some researchers and see if we can convince them to pursue it.

    We do already fund research into clinical management approaches – exercise studies for Charcot-Marie-Tooth disease and mitochondrial myopathy and foot othoses for Duchenne. We have a strict research funding process in place and such trials must be set up properly to make sure they get a reliable result. The problem will be that it is difficult to have a placebo because I’m sure you’d know you were being treated! So it may be that it isn’t because of a lack of interest that the research hasn’t been done, more the difficulty in designing a robust trial. We hope though that somebody will step up to this challenge and write a good application to us for funding.

    Best wishes,
    Kristina.

    kelvidge
    Participant
    Posts: 113
    Joined: 07/09/2010
    #77113
    Re: STS/Vecttor Treatment

    Thanks Kristina

    Nice to know there’s talking going on and hopefully we’re moving in the right direction. Some independent analysis would certainly help i think. I think the path needs to be to prove it works and then worry about why it works after. Proving it works would make getting funding to prove why it works easier..whether it’s MDC or someone else.

    Can see what your saying about placebos…but perhaps the standard research trial route needs to be bent to deal with a different approach for these sorts of treatments..though i get that MDC has to have a set of rules to follow.

    Perhaps treat someone in the UK twice a day for x number of weeks with a set of tests to assess improvements in muscle condition, flexibility, mobility, heart and lung function, general wellbeing etc then cut the treatment completely for another x weeks and monitor the same things and see the differences…then go back on the treatment for another x weeks and so on. So compare the changes in individual patients rather than between different patients.

    From the way beckers affects me i know if i sit around for a couple of weeks doing very little (such as after i’ve twisted an ankle – it’s happened a few times to me) i deteriorate and feel a bit stiffer and become less mobile and less confident on my feet…then the periods i’m much more active i feel better about myself and start to see an improvement in flexibility and mobility.

    My expectation of STS/Vecttor is that if the patient stops using it any improvement it’s given will gradually reverse in a similar way to my inactive periods..but somehow the levels of activity would need to be kept constant throughout a trial so it can be proven to be the treatment working. To all intents i’m taking it to be similar to exercise.

    You mention other clinical management studies into exercise in other conditions…if an analogy can be made to exercise could the methods used for those studies be applied here then some of the groundwork in setting up a trial is already done or can be refined.

    Anyway will leave it with you and hope a researcher or two will take on the challenge. Please keep us posted and i’ll update if i catch anything relevant..

    Thanks for all your help

    Andy

    andyb
    Participant
    Posts: 22
    Joined: 24/09/2010
    #77114
    Re: STS/Vecttor Treatment

    To tie back in with MDC website the latest view from MDC/NMC:

    http://www.muscular-dystrophy.org/research/news/3069_alternative_therapy_for_duchenne_and_becker-should_we_believe_the_hype

    Agree those considering should be cautious until someone somewhere can give us the real proof we need. Those few who do brave it please give us your feedback. There is continual feedback on the facebook groups i linked to before so i would suggest following them. The more people who are aware of this treatment and calling for research into it the more likely someone is to actually research it …whether it is via MDC or not.

    Thanks to Kristina and those at MDC/NMC for looking into this

    Andy

    andyb
    Participant
    Posts: 22
    Joined: 24/09/2010
    #77115
    Re: STS/Vecttor Treatment

    I would like to say that we have extensive experience with Dr Rhodes. Our daughter has RSD (painful nerve condition) and I was told about his website. I liked what I read and emailed for more info. on a Sunday. Within one hour he called back and spoke to my daughter and gave her very encouraging promises that the STS would alleviate her pain. We went back to the website which at that time promised 90% pain relief for 90% of his patients. What parent would not travel there to alleviate their child’s suffering with statistics like that? The website touted his patented cream that was used in conjunction with treatment. We took out a bank loan and drove to Texas.
    My daughter did not experience pain relief. It was a tremendous blow to her because he had given her such HOPE. Throughout the process and the long drive back. Dr R just kept saying she had to keep working at it. And for $25 he will gladly give you new settings for your new $4500 machine.

    Please use a great amount of research before investing your money. Dr R has had his attorney send us cease and desist letters because we do not want others to go there without careful thought and investigation. For that reason I do need to say to you that this is my OPINION.

    God Bless you all. I do not know alot about DMD but I do know what it is like to have a suffering child.

    betsykk
    Participant
    Posts: 1
    Joined: 28/02/2011
    #77116
    Re: STS/Vecttor Treatment

    Over the last year many members have been asking for information regarding Dr Rhodes and his STS / Vecttor treatment for Duchenne. In light of this and members requests for him to appear at our conference, the board of trustees have voted to invite Dr Rhodes to talk about his work at a workshop at our annual conference. This will provide an opportunity to debate the merits and possible need for further investigation and a clinical trial involving Vecttor machines.

    We must stress at the moment that there is no clinical or scientific evidence that can verify claims of the benefits made by Dr Rhodes, parents or users of this machine. Action Duchenne can not endorse STS / Vecttor due to the lack of data and trials, but recognise the merits of maintaining an open but cautious view where opportunities may exist to help those living with Duchenne

    Dr Rhodes is appearing at the conference at his own expense.

    Action Duchenne board of trustees

    tlevene
    Participant
    Posts: 2
    Joined: 24/08/2011
    #77117
    Re: STS/Vecttor Treatment

    That will be very interesting! I will try to come along, thanks for letting us know.

    BW
    Kristina.

    kelvidge
    Participant
    Posts: 113
    Joined: 07/09/2010
    #77118
    Re: STS/Vecttor Treatment

    HELLO IM MARISOL, I LIVE IN MEXICO, IM 44 YO AND I HAVE LGMD, MY FIRST SYMPTOMS STARTED VERY MILD SINCE I WAS 12 YO, I WAS DIAGNOSED WHEN I WAS 21 YO, IT TOOK MANY YEARS TO GET A DIAGNOSE TILL THE SYMPTOMS GOT MORE SEVERE. I HAVE TRIED SO MANY ALTERNATIVE TREATMENTS SINCE THEN AND ALL KINDS OF VITAMINS TOO. SINCE THE YEAR 2000 I HAVE FELDENKRAIS THERAPY, BUT NEVER GAVE UP LOOKING FOR NEW TREATMENTS.
    ON MONDAY APRIL 30TH I HAD MY APPOINTMENT WITH DR. RHODES AT THE SOUTH TEXAS INNOVATIVE MEDICINE CLINIC IN CORPUS CRISTY, TX. THEY DID XRAYS IN MY FEET, THEY DID STRENGHT TESTS IN MY HANDS, ARMS AND LEGS, THEY DID NERVE CONDUCTION TESTS IN MY TOES, ALSO CIRCULATION TESTS, AND THEY TOOK A VIDEO OF HOW I WALKED AND OTHER THINGS. AND THEN I STARTED THE TREATMENT WITH THE VECTTOR MACHINE FOR 40 MINS IN MY FEET FIRST AND THEN 40 MINS IN MY ARMS. THE FIRST THING I NOTICED AFTER THE TREATMENT FINISHED WAS THAT MY FEET GOT COMPLETELY UNSWOLLEN, I USUALLY HAVE MY FEET SWOLLEN CAUSE I STAY SITTING DOWN FOR LONG PERIODS OF TIME AND AS I DONT MOVE AS MUCH NOW, ALSO CAUSE AS WE DROVE ALL THE WAY FROM MEXICO TO TEXAS.
    SO MY FEET FELT VERY GOOD, BUT THEN I REALIZED THAT I WAS NOT MOVING SO MUCH FROM ONE SIDE TO THE OTHER WHEN I STARTED WALKING. I HAVE TO HOLD FROM SOMEONES ARM TO WALK, BUT BEFORE I HAD TO MOVE MY UPPER BODY FROM ONE SIDE TO THE OTHER TO WALK. WELL AFTER THE VERY FIRST SESSION WITH THE VECTTOR I WAS ABLE TO WALK WITHOUT THAT MOVEMENT. I ALSO EXPERIENCED MORE BALANCE AND LIKE IF I HAD MORE STABILITY WHILE I WALK. ALSO I FELT MORE STABLED WHEN I STAND STILL. I LEFT THE DR´S OFFICE THAT DAY AND THE IMPROVE IN THE BALANCE DIDNT GO AWAY AND THE FEELING OF STABILITY DIDNT GO AWAY, I FELT ALSO ALL MY BODY WARM, I USUALLY HAD MY HANDS AND FEET COLD, NOT ANYMORE, ALL MY BODY INCLUDING MY HANDS AND FEET ARE WARM SINCE THE FIRST TREATMENT.
    NEXT DAY IN THE MORNING WHILE I WAS IN THE CAR GOING TO THE SECOND SESSION I TRIED TO EAT SLICES OF APPLE BY MYSELF BEING SITTING DOWN IN THE CAR AND TO MY SURPRISE I WAS ABLE TO EAT ALL THE SLICES OF APPLE BY MYSELF WITHOUT SOMEONE HELPING ME RAISE MY HAND, I DIDNT GET TIRED REPEATING THE SAME MOVEMENT. AT THE BEGINING I THOUGH, IT WAS JUST IN MY MIND LIKE I WAS IMAGINING THINGS, BUT LITTLE BY LITTLE I REALIZED THAT THINGS WERE CHANGING IN MY BODY, FOR REAL. AFTER THE SESSION THAT DAY I STARTED TRYING THINGS LIKE CLOSING MY FIST, WHICH I COULDNT DO ANYMORE WITHOUT A LOT OF EFFORT, NOW I CAN CLOSE ALL MY FINGERS WITHOUT EFFORT BOTH HANDS. I TRIED CLOSING THE ELECTRIC WINDOW IN THE CAR, WHICH I COULDNT DO ANYMORE EVEN THAT I PUT ALL THE STRENGHT IN MY FINGER, WELL I TRIED AND I DID IT WITH NO EFFORT!
    ON WEDNESDAY I TRIED ANOTHER THING, WHEN I GO OUT SOMEWHERE THAT I HAVE TO WALK A LOT I USE A WHEELCHAIR AND MY BROTHER OR MY NIECES PUSH ME ARROUND, CAUSE I COULDNT PUSH THE WHEELCHAIR BY MYSELF, WELL I TRIED MOVING THE WHEELCHAIR FIRTS WITH ONE OF MY ARMS AND I COULDNT BELIEVE THAT I COULD MOVE THE WHEEL, THEN I TRIED WITH BOTH HANDS AND I WAS ABLE TO MOVE IT, AND I DIDNT PUT ALL MY STRENGHT, OR EVEN A LOT OF STRENGHT.
    I WAS THERE FOR 5 DAYS, I DID THE TREATMENT 2 TIMES A DAY, ONCE IN THE MORNING AND ONCE AT NIGHT IN THE HOTEL, AND I HAVE BEEN NOTINCING LITTLE THINGS EVERYDAY, OR I SHOULD SAY HUGE THINGS FOR ME.
    ON SUNDAY THAT WEEK I WAS HOME AND I FELT LIKE TRYING TO DO BREAKFAST, I DIDNT GO INSIDE THE KITCHEN ANYMORE CAUSE I COULDNT DO THINGS ANYMORE, WELL I TRIED AND I WAS AMAZED THAT I COULD DO SCRAMBLED EGGS IN THE PAN, I BROKE THE EGGS WITH MY HAND CRACKING THE SHELL AGAINST THE BOWL AND THEN PUTTING IT APPART AND STIRING THE EGGS AND THEN I USED A SPATTULA TO COOK THEM IN THE PAN. I STILL FEEL THAT ITS NOT TRUE THAT ITS LIKE UNREAL, BUT ITS REALLY HAPPENING. LIKE ON MONDAY MAY 7 THIS WEEK THAT I TRIED TO DO A PONY TAIL IN MY HAIR, WHICH I HAVENT DONE SINCE I CANT REMEMBER WHEN, AS I HAVE LONG HAIR I COULDNT DO THAT ANYMORE, WELL I DID A PONY TAIL IN MY HAIR!! AND WITH OUT EFFORT IN MY HANDS OR ARMS, I PUT UP MY ARMS IN A FURITURE LIKE I USUALLY DO WHEN I COMB MY HAIR, I TOOK THE RUBBERBAND AND I HOLD MY HAIR AND TWIST THE RUBBERBAND JUST EASY LIKE I USED TO DO BEFORE!!
    THEN I TRIED PUTTING ON MY BELT ON MY OWN, I DIDNT DO THAT ANYMORE, I DID IT BY MYSELF WITH OUT EFFORT. THEN I TRIED PUTTING ON MY EARINGS, I DIDNT DO THAT ANYMORE, AND I DID IT BY MYSELF!
    MY BODY FEELS LIKE FLEXIBLE, MY FINGERS FEEL STRONGER, I FEEL WAY MORE BALANCE WHEN I MOVE AND WHEN I STAND. AND I HAVE JUST DONE THE TREATMENT FOR 9 DAYS!

    THIS IS THE ONLY TREATMENT WHERE I HAVE EXPERIENCED REAL CHANGES.

    Anonymous
    Inactive
    Posts: 0
    Joined: 01/01/1970
    #77119
    Re: STS/Vecttor Treatment

    Hi Marisol just came across your post and found it very interesting

    just wondered
    are you still using it?
    do you find it helps?
    how are you feeling/

    thanks in advance,
    Heidi.

    daisy 2807
    Participant
    Posts: 1
    Joined: 08/08/2013
Viewing 14 posts - 1 through 14 (of 14 total)

You must be logged in to reply to this topic.

Keep in touch