My visit to the Brompton and Bronchial Thermoplasty

I posted some time ago about my referral to the Brompton for Bronchial Thermoplasty.

I had my 3 day stay in Lind ward (met up with Philomela) for tests last week, including the excercise test. There was an awful lot of waiting around and extreme boredom at times, although this was lessened by chats with 2 of the others in the ward. The tests were ok but didn't really show much of any use at all. On the Friday I met up with Dr MG who told me that the excercise test showed that I did not have VCD and although there was some minimal movement of the structures above the vocal cords this was not enough to cause my symptoms. I was so so upset when he said that he could not give me any answers as to why my asthma flares up so regularly and he said that he did not think the Bronchial Thermoplasty would work for my kind of asthma and would not recommend it- basically ""no you can't have it"" I asked him if not the Thermoplasty then what else and he said he did not have any anything else to offer.

On a more positive not he did say that when my asthma next flares up that I should phone one of the CNS's with a view to going up when I am unwell so that they can see what is going on. He also suggested that I should see their physios for treatment. I saw the physios for assessment while I was there, the first one came to see me on the ward and told me that she noticed that when I was speaking to her I was breathing through my mouth! I was so dumbfounded (it is just not possible to speak with your mouth closed - I should know as I am a speech & language therapist!) that I couldn't think of anything repeatable to say!! I am and never have been a mouthbreather. I saw another physio the following day and she was much better, told me that my breathing patterns were ok and that I coped well with the exercise.

Sorry for the rambling, but it has taken me almost a week to be able to come on here to post as I was so upset. I felt that I had been waiting for the last 8 months for nothing. I am getting closer and closer to being unemployed and could do with a bit of sympathy.

Thanks for listening.

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ack I wrote a reply and it vanished! grr

Was just saying massive sympathy for what it's worth as I would be so upset in your position! I really hope they can find something when you go in on a bad day - I did get the impression that things there are more of an ongoing process, and they don't do what I've had at some other places ie make a pronouncement/decision and then stop thinking. Don't know if this was your impression, but I find they seem more open to considering new information and won't necessarily cling to the first thing - so perhaps Dr MG will come up with something later.

Did they say what treatment the physios could offer you, or is it just breathing pattern stuff (which doesn't sound like it would be much use for you?) As you know I had the same one who told me the same thing about mouth-breathing -I don't have your expertise but also thought that was a bit odd. I'm reasonably sure I don't mouth-breathe most of the time because when I'm told to in certain situations I find it feels very odd and unnatural = am thinking if I did it habitually, not just when I'm talking, I wouldn't find it so weird.

Anyway sorry I haven't much of use to offer, but crossing fingers that they do actually do a bit of thinking and come up with a solution - they are meant to be good at cracking tough cases! xxx

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Hi valj,

I'm sorry they didn't have more options for you there and then but do keep in mind what philomela said, they want you back in when you are struggling to get a better understanding. Once they can see what's going on for you perhaps they'll have more options open to you for ongoing treatment.

I fully understand the work thing as I'm in a similar position. I won't say don't worry about it cos you will anyway (if you're anything like me!) but just try to put it slightly lower in the order of things to think about.

Big hugs (((x)))

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Thank you Philomela. I'm not sure what the physios will do as yet, but as usual I will give it a go. Incidentally, I forgot to mention that my histamine challenge was negative like yours. I was very puzzled about this as it was very definitely positive the last time I had it. I initially forgot to ask Dr MG about this when he talked to me as my brain was in upset mode. When he had gone and I had calmed down I asked the nurses if I could speak to him again when he had finished with other patients. I went to the loo and when I came back he had gone. I spoke to the SHO who was really useless, she seriously needs to work on her bedside manner!! She said that I should just be glad it was negative. I told her that was not an explanation so she said that she would ask Dr MG or the registrar to come back up and speak to me. Sure enough Dr MG came back up and gave me a proper explanation. He said that he wasn't at all worried by the discrepancy between that and my previous test as it often varied. He said he wouldn't be at all surprised if he did it again in a month's time and it was positive. Which rather begs the question why do it at all. I was very grateful that he took the time to come back up.

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Was the SHO with blonde hair and glasses, name begins with R? I didn't get much of an impression of her, only when she clerked me, but that is rubbish - no sort of answer when you've just been told something like you had been! And I really wonder why - you read sometimes it's meant to be a gold standard for asthma which clearly it is not judging by those results...

Glad Dr MG explained it though - I found he was good with me at appreciating where I'm coming from, why I might be confused and why 'normal' can be frustrating. With me he just said clearly I was well controlled at the moment and that was why mine was negative and LF ok, and when I said 'not when I get colds which seems to happen whenever things are going well' he said the same thing as to you, that I should let the CNSs know when I was bad and they could get me in to see what it's like. (Not sure other patients would appreciate me coming in with a bad cold/infection mind you...)

I guess if you really don't get anywhere with RBH you could try another specialist centre? From being on here I get the impression that some people can get nowhere with one place and find another one really gets it right for them. Not ideal as more waiting, but maybe something to keep in mind?

EDIT meant to say, think you said other place got you to give up meds for a week before challenge test? Maybe the shorter time really isn't enough for everyone - only if you're really twitchy at the time?

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sorry to hear that you had a difficult time at RBH (i really really sympathize with the repeated tests, especially unpleasant ones like endoscope ones...)

as for other specialist centers, i would recommend Guys clinic with Prof Corrigan although i found that sticking with a clinic can sometimes work ( i hated guys a first but now i quite like it there) though one thing that bugs me about the GSST (guys and st thomas's) is that the no A&E there so in an emergency you need to go to St Thomas's and physio is also at Thomas's as well, but i've found the long term care very supportive and the CNS's there are amazing.

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Thanks very much for the replies. I think I need to stick with the RBH and give them a chance. If that is not successful I think I will just go back to Portsmouth as they said that they are hoping to start doing the thermoplasty some time in the next year and my consultant in Bournemouth can just refer me back with a phonecall or email as they all know each other well.

The staff were very nice at the RBH all except for the SHO (I think the same one Philomela) so I will see what happens.

I was going to try going into work for an hour or two a week at my GP's suggestion, but not patient contact as they have too many germs, but now that I have been turned down for thermoplasty work are now talking to HR and referring me back to occupational health. I think I know what's coming, but I need to be an ostrich and pretend it's not happening at the moment.

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I hope you're wrong, or that something does come along soon to sort you out. And that your work are being reasonable as far as they can be. At least it sounds like you have a back-up plan re treatment!

I found the staff were lovely too - guess if you're going to have an exception to that, the SHO isn't the worst as they aren't there that long and are at the bottom of the heap so can be overruled.

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Thanks Philomela, To be honest, work have been fine, but how long is it reasonable to be on sick leave? I can't see them waiting much longer.