Any information on endobroncal valves... - Lung Conditions C...
Any information on endobroncal valves fitted to lungs? thanks
Dear Davy1192
This factsheet may help
nice.org.uk/nicemedia/live/...
Kind regards
Carol
The fact sheet is good Carol but I notice it is 3 years old. Is there anything more current please?
Many thanks i wil look at the link
Hi Auntymary
This is only information I have been able to find on this procedure. I will do some further research and see if I can come up with anything more recent.
Kind regards
Carol
Dear Auntymary
I have spent a few hours researching this subject and have not found any further reliable sourced information
Kind regards
Carol
Hi Carol thank you very much for your help.
Thanks for trying Carol. x
Hi Davy you may want to look at Perce's recent blogs -he is on holiday just now or I'm sure he would have answered. He had an operation done recently not sure if it was the valve procedure and he is really well now and recuperating. I tried to find out more about this for my brother who also has copd but there isn't a lot of information out there-it could be politics of course as I understand it originated in America and is an expensive procedure but don't think many people in Britain have been treated. I tried a blog on it some months ago and got almost no response so I wish you luck. I should ask the doctor if you qualify if this is something you might pursue. Let us know of future progress, if any!
I have an appointment to see if I will be suitable for this type of lung reductions in less than two weeks. I am being seen at the Brompton Hospital where they do a lot of these procedures on a trial basis as the the NHS won't pay for this type of proceedure. They do one with the valves, one with the coils an another to do with blood through the lungs. I know the latter sounds strange but that was the simplistic explanation given at the time. Of course all these proceedures will depend on the results of my scan on the day.
Hi eepee8 I hope your scan is successful. I mentioned my brother he has had the scan but the follow up procedure isn't clear as all he has had is assurance from his doctor that all is well except for swollen brochial tubes and a letter from the hospital to go for usual lung test in April next year. I wonder going by what you have said about funding if he should be the one pushing forward for the procedure I think there are so few people already had the treatment that he is beginning to lose enthusiasm. Please if you feel well enough let us know your progress and I'm sure this will be a help to davy1192 also.
Of course I will update once I have had my appointment on the 13 of this month. They have already ruled out LVRS due to the fact I probably wouldn't survive the operation or if I did I would probably end up permanently ventilated due to to my limited breathing. I have already been down the route of being on a ventilator for 4 months after respiratory failure due to a flare up so don't want to go down that route again. 
After asking around, I hear this is done at a hospital in Leeds (Yorkshire). I am not sure where you are but perhaps you could access them for info?
Hi Davy
Here is a link dated May 2012 which may be of interest:
dailymail.co.uk/health/arti...
I too was interested in these Endobrochial Valves BUT I am concerned there is so little information. Royal Brompton Hospital have some info on their website and I believe carry out this procedure.
I have just had this page pointed out to me, with a request that I help with info where possible, and advise as best as possible.
I have had valves fitted to to upper lobe of my right lung in February this year. Fantastic success.
I will be following this page closely over the next few weeks and probably longer.
Moderators, I expect you will want to talk to me about this before I get into specific details.
Email please.
Johnwr
Before posting any more information about Endobronchial Valves, or the procedure I went through, I feel that I need to declare my position with regards to interests and affiliations.
I am not a medical professional. In the last few years since my emphysema got so bad that I had to give up work or any strenuous activity, I decided to find out as much as I could about it and related subjects. Along the way I've picked up loads of information. It has taken me quite some time though to sort out the genuine good stuff from the rest. The engineer in me needs to put things clearly, and this sometimes comes across with too much authority. Please be forgiving if this is the case.
This week I gave a presentation at a seminar in Cardiff aimed at getting more surgeons and consultants involved in doing the procedure. My presentation was to put the point of view of the patient, emphasising the differences between before and after the operation. The event was sponsored by Pulmonx, the company that makes the Zephyr valves, and the accompanying diagnostic tool that helps in the accurate placement of the valves.
Since I had my operation in February, I have been wanting to shout out about how good I feel after the event. This seminar at Cardiff was my first opportunity to really do so. My involvement was solely as a satisfied patient. My wife and I got help with expenses for the trip but that is all. I look forward to perhaps being able to do some more of this publicity later, but for now writing blog posts is good.
My intention in later posts is to give as much information as is available about valve implants as possible. I will answer questions as I can. If I don't know the answer to a question I will say so, I will also do my best to find out about it and tell you asap.
That is my position for now.
Johnwr
Hi johnwr thanks very much for the information you have gave so far and would like to here more,my postion at the moment is that i am having a ct scan in a few weeks then if am suitable i will be put forward for this procedure. information you have given would also help jemma and others thanks
Hello davy1192,
Pleased for you that you are in the selection process, I hope all goes well for you. A description of my experience has been published on a blog about COPD this week. To read this article follow the link ---
bitz-and-bobz.co.uk/copd/20...
Also watch the video above
Any questions,just ask, I will answer if I can.
regards for now
Johnwr
John
Thank you so much for the link to bitz and bobz. It gives me encouragement to ask my new Consultant next month. I have a feeling that my previous Consultant although almost retired indicated that the valves were "very expensive" so maybe it was a financial matter???
Hi Jemma
They are expensive, but for me very effective. If you are suitable for the op, go for it.
Johnwr
Hi Johnwr
Any idea just how expensive?
Hi Jemma.
There are two answers to this question.
Firstly, if you are an NHS patient, it should be a question of need, not cost. Hopefully, it will shortly be on the NHS general list where there will be an annual allocation of operation numbers. If you are a suitable case to go forward for the op, then your op will happen as bed spaces and theatre time allow. Until then, you surgeon will ask for funding on a case by case basis from a funding committee. If you have got to that stage, then it is a question of 'when', and not 'if'.
Secondly, if you have to go private, then you are best to approach Pulmonx directly, and they will direct you to the nearest surgeon doing the op. Having said that, a ball park figure of about £5000 per valve, with a minimum cost of about £10000, is a reasonable estimate. There are many things which affect the costing of an operation that would need to be taken into account. From the type of anesthetic used, to if it is necessary to support another condition you may have, eg cardiac problem. As you can see, not an easy question to answer. In a few weeks, I have been told, it is planned to have a new up to date list of 'treatment centres' available, and for those with the opportunity or need to go private, then the question can be asked directly to them.
I hope this helps you.
Johnwr
Hello Johnwr
Since I last messaged you I have seen the local Respiratory Consultant and today I received a copy letter from Brompton suggesting that I may be suitable for the Believer-Hi-Fi trial - please Google. I think these are the Pulmonyx Zephr valves. Some 50 patients will be on the trial but only half will actually receive them! Oh dear, I have the jitters!!!
Are these the valves that you had?
I hope that you are well and take care
Love Jemma xxx
Hi Jemma,
I have just spoken to one of the people involved on the fringes of the Believer-Hi-Fi trial at the Royal Brompton Hospital. The position as described to me is as follows:
1 The valves and technical backup are provided and sponsored by Pulmonx, the manufacturer of the valves.
2 The NHS is providing and sponsoring all else to do with the trial, ie the consultants, the theatre staff, ward staff, cost of beds, meds etc.
3 The criterion used to chose patients suitable for the trial are exactly the same as the standard route to this procedure.
4 50% of patients will receive the standard procedure, the other 50% will not, and will be a control group to measure the results of the 'active' group. Noone on the trial will know which group they are in until the trial has ended.
5 After the trial has ended, those patient who were put in the control group will be offered the chance to have the procedure 'done for real'.
6. As far as I know, the monitoring period after the procedure is about 3 months, but may be longer in certain cases if deemed necessary for the trial.
7 After the initial scrutiny of your Lung Function Test results, and CT scan, if you are chosen as a suitable candidate, then you will be called forward very quickly, I believe a matter of a couple of weeks.
Jemma, I would say 'Go for it'. The operation is painless. At this point, if selected, you have a 50% chance of the op for real,very soon. Otherwise, an almost certainty of receiving it at a later date.
These are the very same valves as I had fitted. Just over 12 months ago. I am still amazed at the improvement I gained.
Hope this helps. Once you know if you have been selected, the jitters will go away. If you need more reassurance, or have more questions, just ask.
Fingers crossed for you, breathe easy,
Johnwr
Hi Johnwr
Thank you so much for replying me as it has certainly put my mind at rest quite a bitm - the thought is still a bit scarey though!! Just wonder why they are called it
Believer-Hi-Fi trial instead of Pulmonx Zephyr EBV's?????
controlled-trials.com/ISRCT...
I'm delighted at your continued improvement and hope that I am also as lucky.
Once again many many thanks for your help.
Jemma xxx
Thank you Eepee and John WR
Here is the PulmoNYX link
Hi Johnwr went to RB supposedly for tests for suitability for Stents but got tested for LVRS - that was in 2008 some time back. I really didn't want the LVRS although I saw a patient who had just had part of their right upper lung lobe removed - just a thin scar under the breast and two "holes" for instruments under the right arm - very neat job indeed. No sternum cutting.
I mentioned to my Consultant about Endobronchial Valves and, at the end of 2009, he said I was a "very suitable candidate for for Valves". To cut along story short my name was on his list but he retired in 2010/2011 so nothing happened. I see their new Consultant next month and hope that things haven't been left too late for me.
Yes, I have seen Davy's posts - very interesting. Also Johnwr.
Sorry, that link doesn't work
Try
pneumrx.com/technology.aspx COILS
pulmonx.com/en/products/zep... ENDOBRONCHIAL VALES
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