There has been a lot of interest and support from many of you regarding this procedure but it seems that there are a lot of variations over the country with some medics willing, others not (cost?) and a few who'd never even heard of it. (call yourselves doctors?). Seems like it still depends on where you live. It seems to me that the BLF could do some useful work in trying to get the benefits of this procedure rolled out country - wide so it's not such a lottery. As my consultant said to me "It will cost the NHS between 5 and 7 grand (actually he didn't say 'grand'!) but we estimate that will save the NHS money in the long run on hospitalisation, treatment etc". I said that would bound to make that nice man in charge of health, Mr Jeremy...can't remember his surname for the life of me...very happy!"
Thoughts?
Btw All good so far with the breath indoors, but outside not so good with all the storms. May your tubes be free.
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notlocal
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Morning Bob - if it's the 'new' type of valves like John had, I think it might at least partially be down to not having enough people trained in it yet. I know I read something somewhere recently where clinicians were discussing the proceedure and they were calling for interested Doc's to get in touch re training. The other consideration is patient type - previous valve / LVRS techniques have had limited application because they required the patient to have a particular pattern of lung damage ie. confined to specific areas of the lung. I don't know if that applies to the proceedure you had? Would be interested to hear more re that - if the area / pattern of damage is not an issue I just might enquire about it myself - that said though, I would want to know more specifically about the amount of improvement I could expect. Sometimes when I read post op reports of walking an extra 100 metre's or whatever I am not so impressed. I have found that regular hard exercise has probably done as much as any LVRS would - but I am happy to be proved wrong on that one if it could offer me more I will catch up with you later Bob - I was supposed to be shutting down when I saw you had posted and just meant to say 'morning. Really late for dentist now
There's a nice little animation here pulmonx.com/en/downloads/vi... about the procedure. No cutting. Maybe the techy was talikng about your neck of the woods only? Glad I had it so far (and it's totally reversible if it doesn't 'take'). The one week window for it to work is now over and as I say there is definite improvement measured by the highly scientific method of how long do I have to pause for breath at the top of one flight of stairs ( 0 secs). But the winter and the storms are another matter. Bob
There are 3 in Bristol alone who can perform the op, but there were 3/4 observers from London when they did me, so yes, probably not enough trained yet.
Patient type - yes, there were 3 hospital appointments before with about 8 tests in all to check suitability. This isn't for everyone. Another hurdle is whether the upper and lower lobes can move or are fused. If the latter then it won't work. This can only be finally determined during the op, although the CT scan can give a good idea. 50% of people have them free moving and 50% fused.
Consultant said before that there should be 20 - 30% improvement in lung function and I'd say he's been right - for indoors!
Thanks for that Bob. That will probably discount a lot of people then, though for those who have the 'right' pattern of damage it's a way better option than the old 'under the knife' version of LVRS. I will mention it next time I see my specialist - unlikely for me I think - but nothing to lose by asking. ttfn V
I had rubbish care at the start - but that paid dividends because it made me more determined to live long and live well (thinking of calling it my 'live long and prosper' plan). I went so far as to move to get a better GP service and be closer to a hospital. I have a really good team around me now - not because they are particularly outstanding, but because they listen, take my thoughts into consideration and are always available if I have any worries. GP is happy to visit if I don't feel up to going to the surgery, oxygen nurse visits me at home etc. They have a good COPD outreach programme going - which is important with Cornwall being so rural. When all is said and done though, I still tend to 'do my own thing' where my health is concerned. The way I see it it's my life, I want it for as long as possible, and it is staying firmly in my hands - not theirs. The days of the passive patient are numbered, thankfully. Most of how well we do is down to ourselves with this illness - there's no cure and the inhalers don't make any real difference. Our breathing is better if we exercise, eat well and keep within a reasonable weight range - simple but boring, sometimes hard to stick to, but it works. ... and I am just off to do the 'eat well' bit and catch the news!
Excellent. I'm going to reread this later as it contains pointers I should be using in my own life. Agree totally about the inhalers, but I still do them twice a day religiously (in case!).
Hi Bob, all points were against me I am afraid, lol. My Doc said it was "too experimental" about 18 months ago, then (when I raised it again) that I had the "wrong pattern" lungs with damage top and bottom. It still cheers me to read of others getting help though.
very good question stitch,what makes it spread if we have stopped smoking and taken all the precautions available to us,i don't know the answer wish I did,xxx
As far as I remember - there is no 'spread'; the damage at the top is from a different cause to the damage at the bottom, and 1 of them is smoke damage. Sorry to be so vague but it is a long, long time since I read up on it.
so toci if damage is from a different cause some smoking damage and other damage could be childhood illnesses,yes I understand your description ,smoking wont have helped us but if you put illnesses pollution ,places were people were brought up or work places they all add to the toll on the lungs eventually ,thank you,xxx
• in reply to
Progressive incurable condition > hello - why does it spread ?
They should indicate so. My scan indicated they could move and so it was. It's the reason they don't knock you out completely during the op. They stick a mini balloon down there and pump it up and you have to respond to commands (breathe in, hold?) and then they can tell. Can't remember a thing though!
Poking in hereto try to help you clear up some vagueness.
The mini balloon that notlocal referred to is part of a diagnostic machine developed to diagnose the presence or not of Colateral Ventilation. If there is Colateral Ventilation present, then it is an indication that the fitting of valves is not going to work as planned. Here is a copy of a reply I gave to a question on here some months ago:--
Let's see if I can help explain this for you. It may be a bit long-winded, so please bear with me.
In the lungs of a normal, healthy person, there is one single route inwards and out again for each of the alveoli (alveoli are the tiny cavities at the end of the airways where the gas exchange with the blood happens). Think in terms of a bunch of grapes. Alveoli are the grapes, the airways are the stalks.
When the lungs get damaged, whether through disease or pollution or irritation, if the membrane suffers extensive damage, then some of that membrane is replaced, as part of the healing process, with scar tissue. If there are repeated episodes of disease, or sustained exposure to pollution or other causes of irritation, then the amount of scarring can become significant.
Scar tissue is not as elastic as the original membrane. It also does not permit gas exchange. As our lungs expand and contract, if the sites where scarring has occurred have become a significant size, then some tearing can happen. This tearing is minute, and is no cause for concern in terms of day to day wear and tear. It is the long term combined effect over years that is the problem. This is where we now jump to, several year down the line. Imagine that two adjacent alveoli have a lot of scarring, and another inflaming infection takes hold, and one particular breath is deeper and heavier than normal, and it causes a tear that goes through the tissue between the alveoli. You now have a hole that will not close. The tissue will heal, but leaves an enlarged cavity because that requires less stretching than the original formation. For the bunch of grapes, two grapes have been replaced by one damson fed by two stalks. After several more years, a number of damsons have formed, and some of those have merged into much larger plums. This is now advanced Emphysema, with some large cavities (called bullae), and we are at the point where medical intervention is required. One of the things that has to be considered to determine which operation is best to go for is how this damage presents itself.
The structure of the lungs is that they are divided into zones called lobes, three in the right, and two in the left. Thinking in terms of the bunches of grapes, consider that each lobe is home to one complete bunch whose only contact normally is through the main stem (the main airway). If the damage within the lungs is confined within the individual bunches, in other words, does not cross the boundaries between the lobes, then there is no colateral ventilation. Colateral ventilation occurs when the the tissue damage permits the passage of air between the lobes through holes between the lobes.
As the damage progresses, as the cavities form, so the internal support structure of the lungs gets reduced. This allows the lungs to become longer and they over inflate because of the loss of elasticity. They sit on the diaphragm, the bottom lobe of each lung gets compressed and generally cannot continue to work properly. The diaphragm now has to lift this extra weight with each breath taken. Through a day, that adds up to a lot of extra hard work. Taken with the loss of alveoli, and the presence of frequent infections etc, the lungs are now operating at maybe as low as 15% of their full capability when in good condition. The patient is permanently fatigued and needs lots of medication to keep the airways open. Often oxygen is needed. At this point, the consultant decides that surgical intervention is required. The first choice at the moment for most consultants is to use pulmonary valves. They are easy to fit, they allow the blocked off part of the lung to continue to pass CO2 and the lungs natural secretions out. Most importantly, they are reversible (if need be, they can be removed easily). The biggest deciding factor in choice for or against valves is whether or not there is colateral ventilation. If there is none, or is very minor, then valves could be considered. If there is colateral ventilation, then the usual decision is to go for lung reduction surgery.
As you can see, at the stage where there needs to be a choice made, the presence or not of colateral ventilation is important. Links to some videos that may help follow:
LVRS (lung volume reduction surgery) and endobronchial valves are two totally different procedures that achieve two different outcomes. The former is where part of the damaged lung is cut away and involves invasive surgery, the valves are one way valves inserted into the airway using a camera for guidance, via the nose or mouth. x
No, valve implants are a non invasive form of LRVS surgery. I've just undergone it and on the surgery form was written LRVS. The valves collapse non functioning parts of the lung = LRV.
Hi notlocal, I think we are talking about two different things, the endobronchial valves (as shown in the video clip you gave) are one way valves that simply sit in the airways letting air out but not in to the more diseased part of the lungs. Yes, the lower unused parts of the lung do then collapse as they are not being used, but they are not surgically removed as in the original LVRS which was the only option available up to a few years ago. Until fairly recently I was not aware of the endobronchial valves and only knew of the invasive route which rules many people out due to lack of stamina, brittle bones, etc. I just thought I would make the distinction between the two operations as I am sure many people will be unaware of one or the other, or both! It's fantastic that you have been able to have these valves and wish you all the best. x
There's LVRV (Lung Volume Reduction Valves or Endobronchial Valve Inserts) ..... I was one of the first in Wales - had it done in 2011 and it's what Notlocal has just had had done. In my case I had the valves inserted to deflate my left upper lobe to allow my left lower lobe to expand into the cavity. More about that later .....
Then there's LVR by surgery ..... this is heavy going and not an operation I would look forward to. My neighbour had it about three years ago & he's had a lot of bad problems since.
Then there's the third way ..... LVRS (Lung Volume Reduction Springs or Endobronchial Spring inserts). This is a new procedure, it's still under trial and initial results are looking very good. The procedure is yet to be approved by NICE - we're hoping it will be by the end of this year. The procedure is non-invasive and, like the valves, is all done with an endoscope
The LVR valves I had inserted was not at all successful for me - I am no worse, but neither am I any better. I have severe COPD lung damage basically caused by an inherited genetic condition called Alpha One Antitrypsin Deficiency (A1AD) ..... basically the damage to my lungs were unsuitable for the valves to work. I am informed by one of the UK's top lung specialists at Royal Brompton that the springs should do the job, but I have to wait for NICE approval ....... frustrating to say the very least, but a damn good reason to keep alive, positive, strong & in good health.
Ah, Alpha one. I don't know why but I thought you were a smoker (like me). Frustrating to have to wait for NICE approval. My consultant mentioned the spring inserts (he called them coils) but I'm not very up on them. Is there a video somewhere? Let's hope that approval comes soon.
I posted a couple of other links above (under Johnwr post) which explains the different LVRS, LVRS with Valves and the link here which explains LVRS with coils.
No, not confused about what I had done (valves all the way). Coils were mentioned as a possibility in the future but as the valves were coming my way I just didn't research the coils. I'm all valved - up for the spring!
The thing with Alpha One, you don't know anything about it until the onset of middle-age, long after the damage is done.
Coils/springs .... same thing
Good thing about the valves, the whole procedure is reversible. I am told they would need to remove my valves before inserting the coils. What I don't know is whether my deflated lobe will re-inflate when the valve is removed - logically I'd recon probably yes.
Hi twiceshy, no, I'm a carer to my mum who has emphysema so am eager to learn everything I can about treatments that may be available and which is what has brought me to this forum. Unfortunately, I think it may be too late for her (although I live in hope!) but fantastic to see these new procedures being used which will be of benefit to others in the future. x
sorry about your mam,yes its hard being a carer.then you have it yourself not you me,so any new developments is a good thing for people who will benefit from them ,don't give up on your mam,keep living with hope,thank you,xxxyou learn a lot on hear ,but I google anything and nothing,
Thank you for your kind comments twiceshy. All the best. x
Hi everyone..I am new. I had LRVS May of 2005. I did very well..couple of rough patches while in the hospital as it is a very invasive procedure. I did breath better after the surgery and the results were good for 6-7 years which is about the amount of time they predict. As we all know the disease is progressive, but those years were really great.
What a brilliant thread and one full of such hope for so many, Unfortunately for me, I had both lower lobes removed when I was 15 and I believe that makes me unsuitable for any type of valve reduction help.
But its really interesting to read all this, and I feel it will help many of us lung sufferers to a longer life
Hi not local pleased you are doing well, going for my check up at Drs tomorrow, will mention about the valves Op, pretty sure they don't do this in Guernsey, Channel Islands, wonder if they do it in Southampton, went over there for a talc procedure when I had collapsed lung, take care
Good luck with your doc. Googling Southampton Gen Hospital and Endobronchial valves didn't bring up any immediate results but that could mean I'm just crap at googling! It's taking off though and as more and more surgeons are trained, it will be more available.
I was having a quick look for Montalbano as Southampton would be his nearest major hospital. You're not trolling me are you? I apologise if I read your comment above in the wrong way.
It has been 9 years since surgery..The benefits usually last 6-7 years.
As you know COPD is progressive so I am out and about, but not nearly as good as just after surgery.
I've just seen the tv you were referring to (the one show?). This is a different procedure to the one I had. The guy there had coils fitted, I had valves. As the presenter said, the coils are on trials at the moment and not available in this country, only in the usa I think. The endobronchial valves are avialable privately here (after tests to establish suitability) and will set you back about £15 k. They're not always successful either. Mine (NHS) weren't and they're going to remove about 20% of my lung in the new year to let my more functioning parts work better. Regards,
Hi I am fairly new to the forum and have just picked up on your post of some 3 years ago regarding lung valves and the like. At that time the NHS seemed reluctant to persue this course as you rightly say due to cost, however these treatments can be carried out privately probably by the same consutants who work within the NHS.
Anyway, whilst it was a long way bay back do you possibly have any information or pointers on these treatments? I suffer severe emphysema and am looking urgently for ways to improve quality of life and some peace for my partner who suffers my frustrations.
Thanks for letting me know I did think it a little bit of a long shot but felt I had to explore any and every possibility. Am currently awaiting the return of one member of the forum from the states following a stem cell treatment and am in fairly regular touch with another member who seems to have done a good amount of research.
Can you please get me in touch with another member who "posts" a person named Stone,
don't know anymore deatail about them, they also would appear to have done considerable research which maybe could help.
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I will catch up with you later Bob - I was supposed to be shutting down when I saw you had posted and just meant to say 'morning. Really late for dentist now 
V 
Lung Volume Reduction Surgery
Lung Volume Reduction Surgery looming
Lung Volume Reduction Surgery
