RE: Re: Aspirin desensitisation in the UK

[Guest guest]

Hi

I use the same technique as you have outlined here. I hang over the end of the bed for about 5 mins and then lie of the bed normally for about another 10 mins as that way it doesn't all drain out so easily. Sorry to hear about your stomach issues. Fortunately that didn;t happen to me and on advise I have increased to 20 drops per nostril.

As for SOS I do get a little sensation and pick up scents from time to time. I first noticed diesel fuel near and got pretty excited about that - how sad us Samters folk are! It tends to come and go and is far from perfect but something is better than nothing.

Best wishes and hope things get on an even keel for you

Mike

samters From: kdcurlywurly@...Date: Wed, 25 May 2011 16:07:47 +0000Subject: Re: Aspirin desensitisation in the UK

HiLike Mike, I am doing the nasal desens. I have been doing it for 2 weeks now. I started with 3 pipet drops in each nostril and increased it by one daily to a maximum of 9. However, I had very bad stomach pains last week and have been advised to reduce to 4 drops each until further notice. I am now taking medication to help my stomach as it is believed that the aspirin is most probably causing it.It may be a very silly question, but whenever I have put medication up my nose I have always assumed the position of laying on my back with my head over the end of the bed. This is the way I was doing it with the aspirin but I wondered if this method is more likely for the aspirin to go into my stomach. What methods do other use?Thankyou>> Hi ,> > Mike is correct, my husband has been desensed in Cardiff.> It appears that they have had several people through since pushed for > it a couple of years ago.> > We have not been on the samters site much since then as has been so > well. Back now though due to return of polyps following a bad infection > in the new year.> > They use oral aspirin in cardiff like the Scripps protocol rather than > nasal which it sounds like Mike had. Desense carried out as soon as > practical following surgery.> > SOS completely missing since surgery some years ago and unfortunately not > returned after desense. > I think it depends whether loss is a result of swelling or damage during > surgery. Hopefully yours will return once you have the polyps under > control.> > Good luck, mail me if you need more details.> > Mandy>

[Guest guest]

Hi

Been away for a while so sorry about delay with reply.

I have had only one FESS and at the same time had my septum straightened. It was about 2 years later that I finally got desense under way. I have some grade 1 polyp regrowth but Dr Scadiing not over concerned with that.

My SOS is a bit random really. Sometimes none at all and at other times I have a little. From the other posts on this site is is very much down to chance and perhaps more a refelction of what the Samters based infections have damaged

Best wishes and hope you get your GP onside soon

Mike

samters From: rdawson5656@...Date: Fri, 20 May 2011 08:01:44 +0000Subject: Re: Aspirin desensitisation in the UK

Thanks for that Mike,it is very helpful.I suppose I will have to see what my GP says and then have an argument if necessary!I have noted that other posters here have mentioned that the desensitisation was done after a polypectomy.Was this done in your case?Also how is your SOS now after desensitisation?That is my main frustration!Regards>> > Hi > > I had a bit of a battle via my GP with the Suffolk Primary Health Care Trust to get a referral to Dr Scadding agreed but got it after about 2 months. Good arguement is that if could save a lot of mony on repeated FESS surgery.> > There are few places in UK that will undertake desense. Ther is one other in London linked in to Dr Scaddings programme but I think otherwise one in Cambridge and perhaps another in Cardiff.> > It is a whole day in Hospital as an outpatient while the dose is gradually increased under controlled conditions so you have a Dr with you on and off the the whole time. I started at 9:15 and went left at 4:30. Then it is more increases in dose gradually over a 2 week period at home - you have agood idea what you are up against by then...... You feel pretty awful as the dose increases and have the ENT Dr's mobile number in case of any unforeseen event. There is no guarantee it will work for every Samters patient and I think about 80% do get some relief. I was relieve I was an 80% case and not a 20% one!> > As I said before it has been life changing for me and so far no nasty side effects from the aspirin as the actual dosage is pretty small. About 100mg each day some of which drains out anyway.> > If you want to discuss more send me a note of you tel number direct to my email and I will give you a ring.> > Mike> > > > samters > From: rdawson5656@...> Date: Fri, 20 May 2011 07:04:36 +0000Hi > Subject: Aspirin desensitisation in the UK> > > > > > > I have read with interest the comments of posters with regard to the beneficial effects of aspirin desensitisation.> > Before I discuss this with my GP can I ask the following two points?> > 1. Is this readily available free of charge on the NHS?> > 2. Does it require hospitalisation while the process is carried out and, if so, for about how long?> > I note Mike Hammond has kindly posted in the past about Dr Scadding at the Royal Free Hospital in London and I wonder if posters are aware of any other consultants who specialise in this area in London or Surrey?> > Regards,> > >