Vein Surgery for RLS?

Posted , 10 users are following.

I've had restless legs syndrome for several years now. I've always been hesitant to try prescription drugs because I'm worried about dependency, side effects and augmentation. But natural methods aren't cutting it.

I recently heard about a vein surgery that they claim helps 90% of RLS patients. The idea is that the blood pooling in poorly functioning, large veins in legs creates the horrible sensations. They remedy this with an outpatient procedure that closes those veins with hardly a chance of bad side effects. I went to a vein specialist who performed an ultrasound and said I have bad veins and that there's a good chance I would benefit from surgery. 

But I'm a generally healthy 28-year-old. My GP said since I didn't have swelling in my legs that there was no way I had bad veins or that surgery would help.

My question is: Has anyone had vein surgery for RLS? What were your results?

2 likes, 16 replies

Report / Delete

16 Replies

Next
  • Posted

    Never read anything in RLS book or forums about this. Sounds very dubious to me. As I understand it, it is a chemical balancing act controlled by the brain!
    Report / Delete Reply
  • Posted

    dONT DO IT WITHOUR REFERFENCE TO THE MOST UP-TO-DATE EXPERTS AVAILABLE

    I have read lots about RLS over the years and I have recently seen just two references to the "blood pOoling" theory (one of them being yours)   Most experts agree that its something to do with your brain and its communications to the muscles or messages from your nerves..   This surgery sounds very drastic and dont forget that RLS seems to have many guises so what works for one doesnt necessarily work for another.

    There are quite a few people who are relieved by drugs (also called medicine) for many years.  In my case I have had adverse reactions to the medicines I tried.  I would have tried others but my symptoms are almost completely gone since I started on the Monash University FODMAP diet.   Invented for IBS it helps RLS victims in many cases, its free  its natural  , its hard to do because the first phase is very restrictive.  On the other hand how would you like 8 hours sleep in one night?

    Search for FODMAP in this forum and on the web.   There is a stack of info around.   Most experts recemond you get a professional dietician to guide you but this doesn't have to cost a lot if you talk to your GP.   Make sure the dietician claims to be familiar with the FODMAP diet and spend maybe 6 short weeks or perhaps up to 12 short weeks to see if it works.    There are a lot of things you can try before you let some surgeon loose on you legs to chase "blood pooling"

    It seems extraordinarily unlikely

    Report / Delete Reply
    • Posted

      Thanks, I'll keep FODMAP in mind! I did another diet, I went about 40 days without a tiny iota of gluten, dairy, sugar, legumes and alcohol and did not notice a difference in my RLS. But I did still eat FODMAP, so maybe I can try cutting that out.

      I do see several reputable vein surgery centers that tout the benefits of this surgery in patients with RLS. But what I don't see are many testimonials from real people--that's why I'm asking here! 

      Report / Delete Reply
    • Posted

      Hi icecool

      I'm not an expert on this stuff.  I am really selfish in that I am only interested up to the point where it helps me.   I have been told by an expert that a diagnosis of non-celiac gluten intolerance is not correct.  In other words you are either celiac or not gluten intolerant.    part of this arguement is that there is a lot of overlap between wheat or other grain intolerance so you might ppear to be intolerant to gluten whereas in reality you are intolerant to wheat.

      I understand what they are saying but I dont know if its correct or not and I dont know if it makes much difference to the diet that best removes the symptoms.    From my personal experience stick to a FODMAP diet for 12 weeks to see if it makes any difference.   You might be delighted.   Cheaper than medicines and perhaps permanent.

      Report / Delete Reply
  • Posted

    Hi,

    I am a regular on PMR forum, and just ran across this discussion, on RLS and vein surgery, by accident.

    so, I've had RLS, for as long as I can remember.(65+ years, or more)

    As the years have gone by, it has gotten progressively worse, and more frequent. It is now continuous, and occurs, whenever I am tired, each day.

    when it starts, I get out and walk, ride the treadmill, take a hot bath,etc.,and ometimes it works, sometime,not.

    i have tried everything that I have heard about. I am unable to sit, sleep, when it starts, And I constantly pace. Just to give you an idea.

    2 months ago, saw the vein doc, because ankles and feet were blue (pooling) and that concerned me.

    i told the doctor about my RLS, as an aside, and asked if surgery might help , 

    He said, 'yes,'

    I talked to my Rheumatologist, and he said he didn't know anything about veins.

    i decided to go ahead with the surgery, and am three weeks out.

    Because, it affects the little nerves in the legs, I cannot give you an honest evaluation of the results, quite yet.

    i will say that for the last few days, I actually am able to fall asleep.

    i still don't get a good nights sleep, but will let you know more, in another

    Month.

    one other thing I forgot to mention: I find that eating less, at night, seems to help.

    barb

    Report / Delete Reply
  • Posted

    Hi Tic,

    i would say that I have less intense bouts of restlessness than prior to the surgery.(most of the time)

    i also do not suffer each night, as I did before, but I see that I failed to mention that I am, and have been taking  Med's (mirapex .5 mg)for several years.

    However, if I am fatigued, and in a confined area, like a car, I will still suffer for hours.

    i hope this info is helpful.

    barb

    Report / Delete Reply
  • Posted

    I've had RLS/Willis/Ekbom disease since I was young, 65 now.  About 7 years ago, I had a MD convince me that the vein surgery would, "cure" the RLS.  It was a big, fat lie!  Did nothing at all to help the RLS symptoms and the veins will just come back.  The disease is not in your limbs, it's in the brain.  The same part of the brain that causes Parkinson's disease.  That's why Parkinson's disease drugs are prescribed for RLS.  Save your money and your legs and don't have the vein surgery for the RLS....it won't work.  

    Report / Delete Reply

Join this discussion or start a new one?

New discussion Reply

Report or request deletion

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up