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Has anyone participated in the coil trials or have knowledge of someone who did?

Posted , 13 users are following.

brenda62546
brenda62546

I am wondering if anyone has had participated in one of the coil trials presently going on?

If so, how much have the coils made a difference? Please give us examples, such as an idea of your background symptoms and situation, as compared to the present symptoms and situation.

Also, does anyone know how long the benefits from them last, once placed in the lungs? 

Thank you! 

2 likes, 28 replies

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  • karen78573
    karen78573 brenda62546

    Posted

    Evening brenda! This is very intresting never heard of coils that they now put in lungs untill I just come accross your dicussion! I wander how they help & also what they are made of! could it be metal or plastic if it's either of these all I could imagine is mass iritation as some people are allergic to metal suchas myself I'm not sure about how the plastic might affect someone but then some plastics can be harmful aswell...I'll be keeping an eye out on any info thank you for such an intresting information! I'll let you& everyone  know if I gain any knowledge about this new if new treatment trial!
    • brenda62546
      brenda62546 karen78573

      Posted

      Hi Karen! Yes, it is very interesting. I live in USA and we are presently in the process of having trials for Lung Volume Reduction Coil treatments. I am not certain what country you are in, but some countries already have the coils. The coil is made of Nickel, and up to 13 each lung are placed by a bronchoscope. After one lung is completed, the other lung will have coils put in several weeks later. The coils work by compressing the lungs, causing tension, which helps restore elasticity, and channeling air. It is suppose to replace the LVRS (lung volume reduction surgery), since it is less invasive, due to using a brochoscope to place the tiny coils versus the surgical way it could be done. Also, the difference is coils versus surgically cutting too. I 'love' to read about them, but in my country, the coils are still in trial, snd are not on the market yet, but does sound promising. I am not sure how long they are effective once placed, but have been trying to find out. I am guessing that it has not been around too long yet to know..lol. Thank you for offering that if you gain any knowledge about the coils you will let me/us know! 
    • karen78573
      karen78573 brenda62546

      Posted

      Afternoon Brenda! Thank you for your reply! And Oh hell that means that these coils wont be any good to thosewho are allergic to the nickel in metal thats a shame, I'm going to check this out & see what else I çan find out it might také some time a few days përhaps but will let u & all know one way or another have a good day whats left of it!
    • brenda62546
      brenda62546 karen78573

      Posted

      I have heard about a few people who were allergic to Nickel, and they could not participate in having coils put into their lungs. I am wondering if they will possibly make them in another form for those who are allergic? Thank you for checking out coils (or Lung Volume Reduction Coil), and please let us know if you find anything good or interesting for us to know! 
    • karen78573
      karen78573 brenda62546

      Posted

      Morning Brenda! Just letting you know I haven't found any new info yet but don't worry I haven't forgotten! And as you mrntioned that you don't know which country I'm in for your info it's England united kingdom & I don't know if the coil trial is running this side of the world but will find out & let you know!.......
    • julie01285
      julie01285 karen78573

      Posted

      Hi Karen,

      I am allergic too to nickel  but think the coils must be coated as this allergy is common.I have had stents in my heart - angioplasty with no problem when had M1 [ heart attack]I am also in pursuit of a trial but you have to submit all test results which haven't been done?

      I am stuck with a lung function dept only a looking at sleep apnea & a CPAP machine not very effective  when probably have micro vascular & syncope as told terminal 15 yrs ago when had really bad nocturnal cough effecting continence  .

      So had acupuncture & flu jab regularly.Now have no energy or stamina & mobility reliant on mobility scooter.

  • martin63346
    martin63346 brenda62546

    Posted

    Please see the following:-

    National Institute for Health & Care Excellence - Interventional Procedures Programme. Interventional procedures overview of insertion of endobronchial nitinol coils to improve lung function in emphysema

    This will give you the information you are seeking.

    • brenda62546
      brenda62546 martin63346

      Posted

      Thank you so much Martin... I am sure this website will give us lots of good information, and hoping Karen, and others receives this information too!
  • martin63346
    martin63346 brenda62546

    Posted

    Hi Brenda

    The coils have been is used in Europe, notably Germany since 2008 and there have been more than 3000 sufferers who have had the coils implanted. Given the recent emergence of the treatment reports indicate that the coils have been effective for at least three years and counting.... 

    • brenda62546
      brenda62546 martin63346

      Posted

      Thank you for that good information Martin. That sounds like good news, since I am hoping the lungs will remain with better breathing, along with (hopefully) no progression, or if must have progression, very very slow progression. I hope the coil never wear off. The three years and counting, so far, so good! 
    • AlbertT
      AlbertT martin63346

      Posted

      I live in New York and I am trying to find a UK (or other European) hospital that would perform the coil procedure. I am willing to privately pay. Does anyone have any ideas?
    • martin63346
      martin63346 AlbertT

      Posted

      Hi Albert

      As far as I am aware Trials are being conducted at the Royal Brompton Hospital (part of Imperial College)( Dr Nick Hopkinson or Dr Palav Shah). Also in Germany at the University of Heidleburg (Dr Felix Herth).

    • brenda62546
      brenda62546 martin63346

      Posted

      Thank you Martin! I am hoping that it will turn out great too.

      Martin, please let us know how the surgery went for you, and how it has benefited your health and life, if you decide to have it done.

      I wish you the best of luck!

    • brenda62546
      brenda62546

      Posted

      Sorry, I meant to address it to "Albert" (sorry Martin)! Albert was the one asking for information regarding hospitals (European) for Coil procedure. 
    • cathryn72696
      cathryn72696 AlbertT

      Posted

      Hi Albert. My mother suffers from Stage 4 COPD. We took her to Stuttgart, Germany, to have the procedure performed by an experienced lung specialist, Dr. Martin Hetzel. The procedure was performed in June 2012 and my mother is still doing well. The treatment not only extended her life but also improved her quality of life. We had to privately pay but it was worth every penny. If you would like to discuss this further, please let me know.

      Cathryn

    • alexander35057
      alexander35057 cathryn72696

      Posted

      Hello Cathryn. I tried to get on trial at the Royal Brompton but after tests and an interview I did not qualify. I have been trying to get it done privately but have not had any joy. Can you advise on the way foward for me. Alex
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