hi just been reading about endobronchial valve treatment at the spire hospital leeds any body had this done x

[lockjean]

[vittorio]

Hi Lockjean - I asked my Consultant who used to teach at one of London's leading Hospitals specialising in Respiratory diseases, about this operation - he said " He wouldl'nt touch it with a barge pole - not enough research has gone into its long term effects on the lungs, AND the "Valves" have a habit of "Leaking " at short notice " ! - Oh dear ! - spose we can only take advice from them that knows about these things !! ....good luck !.

[lockjean in reply to vittorio]

hi vittorio thanks for imfo thats crossed off my list

[junespoon in reply to vittorio]

The leaking, was this the Valves or the coils,as I think the coils are new in comparison.

[johnwr in reply to vittorio]

vittorio, Please read the answer I gave to lockjean further down the page. Some consultants don't move forward.

breathe easy

johnwr

[johnwr in reply to johnwr]

re the leaking valves. An older version of the lung valves, which was dependent on the airway being part of the valve system, was prone to leakages. This valve was produced by a company called Spiration. These valves are no longer available. The current valve in use is made by a company called Pulmonx. They do not leak. Early operations suffered complications due to colateral ventilation. The 'Chartis' diagnostic system now identifies this problem, if present, so the surgeon can make a correct judgement for the patient.

[Sohara]

Oh thats a shame Vittorio, I know this procedure cannot help me personally as I have had both lower lobes removed when young..but I had been hopeful that it would help others .

I do think some of the other posters have had it done, and have reported on here about it.

The only one I remember had reported a 35% increase in his breathing, not too sure who it was

There is a thread about it elsewhere

I do hope your Cons was not correct as it had sounded something that could help some people

[junespoon in reply to Sohara]

Hi it was Johnwr, who had it done I think over a year ago, and Notlocal about 6 weeks ago or more

[notlocal]

Cue me (notlocal). There seems to be a 75% success rate with the op. My surgeon who did the op went through the possible negatives before and long term damage to the lungs and 'leaking at short notice' didn't come up at all. In fact, the operation is easily reversible. Unfortunately I seem to fall into the 25% fail section as my upper left has failed to collapse, leaving me with the same fev1 as before. On the plus side my FVC has shot up 22%. It all hinges on whether the relevant lobes are joined to the ones below or are free moving. This is 50 - 50 % in the population. I wouldn't take your consultant's word - keep investigating. I'm sure Johnwr will also be along soon! (Hi John).

[coastal1 in reply to notlocal]

Hope you don't mind me asking ? Can you explain how your FVC increased 22% and if this has improved your breathing, fitness etc Cheers

[notlocal in reply to coastal1]

No, I'm afraid I can't explain why! I noted down all the data on my phone when I was with my consultant but am at a loss to explain why when the expected collapse didn't happen. I notice an improvement after exertion, ie climbing the stairs. I have airways predominant copd and low temperatures really affect my evaluation as they just contract my tubes. I really need to get a voice recorder for consultant appointments because there's so much I miss!

[13lavinia]

Hi there, there have been 2people I know of that are on this site. However I am going to St James Hospital on Wednesday to see the consultant to see if he will do this for me. I have severe Emphasyma and a giant Bullae in my right lung, so keep fingers crossed. If he is prepared to do this I will put it on site and keep everyone updated.

[johnwr in reply to 13lavinia]

Good luck, 13lavinia.

[maddyo2 in reply to 13lavinia]

good luck 13lavinia x

[Alice-1 in reply to 13lavinia]

Good luck hope you benefit greatly from it ;.) x x

[johnwr]

Hi Notlocal, got here at last.

Lockjean, As has been mentioned, I had this done in Feb 2012. For me, it was 100% successful, With 100% improvement in lung function, giving me huge improvements in my quality of life. I've written on this site quite a bit about the op and my experiences. Start here:

healthunlocked.com/blf/post....

Any questions, ask me.

breathe easy

johnwr

[lockjean]

thanks for all your replies x

[lockjean]

johnwr was your op done private x

[johnwr in reply to lockjean]

Hi lockjean. No, this was done for me courtesy of the Welsh NHS. My consultant had to argue for me in a funding committee.

[hawthorn20]

I read a very interesting article about this on the Daily Mail website. I believe it's the same procedure and the surgeon is a lady called Margaret Kornaszewska.The article can be found by searching under "The Tiny bell that breathes life back into your lungs". Maybe John had the procedure done by this surgeon?

[johnwr in reply to hawthorn20]

Hello hawthorne20,

I only just found your contribution, I'm sorry.

About the article, yes, this is exactly the same operation, and Margaret is my surgeon, a wonderful lady who is very busy doing heart and lung operations. One of my heroes/heroines. I'll be seeing her next week, in Cardiff to give another presentation at a seminar about procedures for lung volume reduction.

breathe easy,

johnwr

[maddyo2]

Hi

I am about to have this done on the nhs. in St james Leeds,i shall update after the op

Andrea