What is the latest with steam ablation etc

[Gazza01]

Hi all. I wondered if anyone knows the latest on the steam ablation and the nerve treatments. I know there is a doctor Pallav shah who was doing it a few years ago at Brompton with great results for certain people. Also the coils that work for all patients. So why is this not more of a topic on copd forums. Is this treatment for private patients only. Or has it perhaps been dropped altogether? Is it not available to uk patients on the NHS yet. Thanks.

[O2Trees]

Im not sure if coils are the same as valves but I don't think they would work for everyone, as you state. Valves certainly don't. There has to be careful assessment for suitability before any of those treatments are embarked on. I have an assessment for valves at the Brompton in January (assuming the weather is not too cold to travel up from Kent as it was last year )

Again not sure about coils but valves are now approved by the NHS as a treatment for those with severe emphysema which I have.

Ive noted new treatments such as lung denervation treatment from stuff Ive read and I'll be asking about too. I don't think any of these treatments are reserved for private patients - they just need to be sure you will benefit. The Brompton runs trials all the time so they are always testing new treatments.

And if you want something discussed, then keep bringing it up. You are as entitled as anyone else here to post and the more people know about such treatments the better.

[Gazza01 in reply to O2Trees]

Thanks 02. You may want to check out the steam ablation. It's only a 15 minute process. No danger of punctured lung either. It does depend on how the damage sits. Though you do apparently need to be in the severe category. Also the coils I am pretty sure are a whole different thing to valves. The last things I read on ablation was 2018 and it said your gp can put you forward for it. The coils I think can be used on anyone. I wish you all the luck in the world. Take care.

[skischool in reply to Gazza01]

Some info on the coils for you,unlike the valves there is more scope to implant them as collateral ventilation is not an issue,however many physicians state that they are difficult to remove if complications arise as opposed to valves which are far easier to remove or reposition or re site if required.

Coil implantation is not suitable for every one and once again a selection process is required to determine suitability.

Ski's official carrier of Bling x 5 x

[O2Trees in reply to skischool]

Skis, do valves ever move around if you have a coughing fit? How are you and the scruffy moggy??

[skischool in reply to O2Trees]

Valves can move and change position some have even been known to have been coughed out though it is not a frequent complication.i am ok,self diagnosed minor infection on Sunday prompted rescue pack but otherwise all seems ok.At the moment i still haven't regained my pre op capacity and endurance so i am disappointed with that and it's possible the Atelectasis has yet to materialise to free up space for my good alveoli? only time will tell,thank you for asking.

love ski's and scruff's x

[Izb1 in reply to skischool]

Hope your valves settle in soon and you feel the relief you need, we cant have our resident comedian out of sorts x

[O2Trees in reply to skischool]

Crossing fingers for you Skis, and visualising free space in your lungs xx

[O2Trees in reply to Gazza01]

I will have a look into steam ablation, thanks Gazza01 - Ive never checked that out. Im severe (33% fev1) and the emphysema is pretty much throughout my lungs. Also have bronchiectasis and not sure if that would disqualify me. We'll see. Thanks for getting back and you take good care too.

[CDPO16 in reply to O2Trees]

I was told in September by a consultant in the North West that I was not a candidate for steam ablation as I have severe emphysema throughout both lungs and it is only used on a small number of people who have emphysema affecting the upper lobes. I did post about it at the time.

[O2Trees in reply to CDPO16]

Thanks CDPO16 - that answers my question as the emphysematic damage is throughout my lungs.

[Hacienda in reply to O2Trees]

Hi Hun, See Myself & skis and a few others on here who have had Valves recently. My Consultant preferred the Valve Procedure, instead of Coils. Not everyone the same. Good luck with your assessment xxx

[O2Trees in reply to Hacienda]

Are the valves working for you Hacienda? I will check your experience. I knew Skis was having them done. I find this all a bit scary and as Im pretty well and not too disfunctional most of the time I kinda think, if it's not broke, dont fix it. But we'll see. Thanks for good luck wishes, it's a while yet. xx

[Hacienda in reply to O2Trees]

Good Morning Hun, Yes, the Valves are working, But not everyone feels the results straight Away. I had my 4 Valve Procedure done in June this Year, Ski's was keeping tabs on my progress whilst waiting for his. They have to settle in first, which can take a little while. I still have to be on Oxygen to maintain all the other organs, not just Lungs that need 02. Today, I can shower without 02. I can walk a little further, slowly. I do need my 02 for exercises in the Gym, but not for Sit Down exercises, and of course while I wait for my call for Transplant. I do feel the Difference and I am so glad I had them Inserted. Good Luck Hun, Stay Strong & Positive. Love n Hugs. xxxx

[Izb1 in reply to Hacienda]

Good news Hacienda that you valves have settled and are working for you, hope the transplant comes soon x

[O2Trees in reply to Hacienda]

Thanks so much - I am pretty positive but I admit to feeling very scared about the possibility of having valves then them not working. Will have to see what they say at the Brompton. Im SO pleased you are improving Hacienda - those improvements sounds quite significant. Love to you, xx

[Hacienda in reply to O2Trees]

I shall "Follow" you Hun, to keep updated with your future procedure. Love n Hugs XXX

[O2Trees in reply to Hacienda]

xxx

[Gazza01 in reply to O2Trees]

Hi 02. I was wondering if you had been to Brompton yet and if so what route you were going down. Gary.

[O2Trees in reply to Gazza01]

Next Thursday Gary - bit of a journey in the cold but cant wait. No idea what to expect.

[Gazza01 in reply to O2Trees]

Ok well best of luck. I'm sure there will be something positive for you. Stay strong. Gary.

[O2Trees in reply to Gazza01]

Thanks Gary.

[JasperDylan]

I had the Vavles fitted around 5 1/2 years ago I had 5 fitted I was one of the early ones to try them out they worked great to start with but during the next 6 months I was back where I started I had already had LRVS on one side and had the other side done over 3 years ago and on that time I had to le@ve hospital on ambiglatury Oxygen 3 ltr s I’m still on it can’t ever see m3 coming off it

See my specialist on Monday for my 6 month check up been doing this for 10 years can’t moan I’m still here writing thing

Have a good day all

[Hacienda in reply to JasperDylan]

Hi Jasper. Thank you for being one of the first to trial The valves for us that are having them now. Yes, your still Here, That is what I say to myself every day. And I feel the valves have helped me. At least I see a Brighter Future, even though I take one day at a time. My valve input was an Interim to Transplant as I have been on the List for 2 yrs 5 months. I am so Grateful for The NHS and any suggestion for a better way of Life. keep Happy and Positive, Thank You Jasper. XXX

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From what I'd heard the lady had 2 sessions and seemed to be doing really well then heard nothing I've asked for a referral to professor shah from my doctors but don't think his done anything about it so frustrated my copd nurse last time I had asked for a referral laughed and said do u go to the brompton hospital then I can't referrer u why can't I be im severe stage 4 I'm 58 I don't want to be ignored and struggle to breathe if u need oxegen u have to jump through hoops wait 3 weeks a youngster drags u around with a oximeter on your finger 6 mins around where u live then says if u get worse ask for another referral then I'm left strugglinget to calm myself down grrrrrrrr bloody useless it's frightening no one seems to care I've asked if stem cell treatment avalible without a referral and transport I will just stay at home as usual my life is exsisting Ithat's not enough