Re: Re: working or not working

[Guest guest]

Glad you're home now - good luck with your life change ;-)

Becky

From: Ogden Leonard <aio_cps@...>samters Sent: Wed, 2 February, 2011 21:24:14Subject: Re: Re: working or not working

Home from hospital on breathing treatments-- now to start figuring out triggers and go through a complete LIFE CHANGE!

From: Bannister <beckyb256@...>Subject: Re: Re: working or not workingsamters Date: Tuesday, February 1, 2011, 2:32 AM

Hi Mike, yes I am part of the research programme - well, I donated my blood anyway :-)

I used to get dreadful chest infections that lasted literally months, about twice a year, but have not had 1 bad chest infection since - I'e had one mild chest infection in 3 years!! My sinuses are still infected, and I have no sense of smell...BUT I have been able to breathe through my nose day and night easily since desense, and have had just one sinus op to open frontals. Desens definatley has helped. I am currently desens to aspirin as I'm awaiting an operation (this Friday and not Samters-related) and I feel quite unprotected...can't wait to get desens again.

Becky

From: Mike Hammond <rovenmike@...>Samters Group <samters >Sent: Mon, 31 January, 2011 22:43:48Subject: RE: Re: working or not working

Hi As has said desense is very likely to help you - about 70% success rate by all accounts. It should slow down polyp regrowth and also help relieve the congestion and asthma symptoms. I have found that I am not half so blocked up as I was, especially as occured during the night. You will need to get your GP to refer you and it took a while for me to get the Primary Health Care Trust to agree the referral. I think I was helped by the fact that both my GP and a specialist's sidekick at the Ipswich hospital where I had a polypectomy had trained at the Royal National ENT hospital in London where Dr Scadding is based (very close to Kings Cross / St Pancreas Station). You can see her privately if it comes to that. Contact Darby on 020 7915 1674 to get an appointment as she manages all the NHS and private appointments. I think that

about 30 or 40 years ago there were some desense programmes carried out under less than perfect supervision in the UK and several patients died so here in the UK it has been frowned upon for a long time. That possibly explains your ENT's attitude. Addenbrookes have been doing some research on desense for those with peanut allergy as well as aspirin. Dr Scadding & Dr Nassar are working on a joint research programme looking for gentic link and I have joined that as I believe has .Your surgeon is letting you down and is taking the only approach he knows - using something in his surgeons toolbox. Side effects - difficut to say as it is early days for me. What I have found is that the nasty green stuff has been much easier to keep moving and out. As that movement started I had an ear infection and badly blocked up ears and associated deafness. That took about 3 weeks to sort itself

out with a bit of aid from prescribed ear drops and over the counter ear wax solution. During that time I had some orchestral tinnitus sessions but that has now subsided pretty much thankfully. I currently have a chesty cough but again the nasty stuff is on the move and compared with pre desense times is much easier to manage. I hope that once the chesty cough clears up I could be in for a good run - you have to stay optimistic when you have Samters......... Hope that helps you - let me know how you get on Best wishes Mike

samters From: kdcurlywurly@...Date: Mon, 31 Jan 2011 19:09:53 +0000Subject: Re: working or not working

Hi MikeYes, I am in the UK but haven't been referred anywhere. My local ENT consultant will quite happily listen to me and all the questions I have for him but brushed aside desense when I mentioned it.I see him 6 weeks after my op and my polyps have always grown back. I had an op a year for 4 years and 2 last year. My consultant has basically said this is what happens, there is little we can do!I asked him if there were any tests that could be carried out and he has finally done a blood test to check my immune system-results due in March.How do I get referred? Do I have to go through my consultant? Did you have any side effects?Regards> > > >> > > > I was just curious. Has Samters caused any of you to quit your full time> > > > job and work part time? Or quit altogether? or work from home?> > > > I'm wondering because there is no way I could work a rigid schedule anymore> > > > away from home. In fact my social life is pretty much the same...non> > > > existant. I don't remember ever seeing a survey on this before. Happy New> > >

> Year to you all. I sincerely believe 2011 is going to be a great year. I'm> > > > pretty much at rock bottom now, so there is no other way to go but up now! I> > > > haven't posted in awhile, but I've been reading many of the posts. Looks> > > > like a few new members in the last month or so.> > > > Thanks> > > > Tami> > > > True Ark Creations> > > > Tami's Berry Farm> > > > www.truearkcreations.com> > > > Everyday holds a possibility of a miracle!> > > >> > > > > >> >>