Guest guest Posted May 4, 2011 Report Share Posted May 4, 2011 Just wondering if eye problems are related to Samters?Sent from my iPhoneOn May 4, 2011, at 1:25 AM, Bannister <beckyb256@...> wrote: Hi Jay, glad you have joined our group, as i'm sure you will find some help, advice and support here. Good luck with your op - i have had this op twice now and felt much better each time for it (10 years apart). I too am 40, and i've had this illness for 11 years now. Please keep us updated with how you get on with the surgery and recovery. Which Doc in Birmingham? I live in the UK too. Becky From: jay ivey <skoda_boywonder@...>samters Sent: Tue, 3 May, 2011 22:43:31Subject: Re: Re: Finding what works Nice to hear from you.I am now 40 years old and have been suffering with nasal polyps from when I was young as I always remember nose running, constant nose blowing.Did anyone else ever get into trouble with their parents coz they got told off about using all the tissue in the house??I used to be a tennis coach in Birmingham and really enjoyed this.Although I had asthma I was so superfit that It never bothered me. In fact it spurred me on to thrash snotty nose kids who were supposed healthy..I began to to see a large bulge in my nostril and didnt have a clue what it was at first.This became bigger and bigger until I found it very difficult to coach coz I couldnt breathe.I had to breathe thru my mouth more and more and by this time 5 years had passed that I had to stop coaching.I hadnt seen a doctor or had a clue, this was to change when I stupidly tried to remove one of my polyps with a heated pair of pliers over a candle..Im sure some will understand the frustration that polyps, the lack of wide spread info thats not about does to people..After my A and E visit I was put thru to ENT Birmingham. A fantastic Surgeon called Mr Drakelee became a good friend of mine for the next 14 years.In this time I have tried all the sprays under the sun and none of them have worked.Why do we get given sprays when the nose is so restricted that the stuff cant go past the things and just falls out the nose.?I have since had 12 polypectomies. The first ones were packed at the end of the surgery to clot the blood flow but were very painfull when pulled out at the time to go home or when you pulled them out yourself a few weeks later at home..My last couple of ops I have not had any packing and this greatly increases speeding up of recovery.In the last three years though they found that I have granulated polyps in my ears, tubes, and I have had to wear hearing aids. I now am nearly fully deaf and have to wear a portable hearing aid on a band..I have had lots of tests done for aspirin, very low score but trees like silver birch were very high on allergy chart..I dont know if anyone has problems with newspaper print coz it sets me off real bad.I have no sense of smell for nearly twenty years and my sense of taste is rubbish.I have been nearly killed when a kitchen caught fire coz I couldnt smell the plastics burning.I could though quite esaily work down a sewer coz I cant smell a thing, nothing..I have had a couple of recent scans and last thursday a lovely new doctor in Birmingham has said that my whole head is full of polyps and I will have to have major surgery. Have a look on Youtube for polyps surgery..This is a very tricky op where they go all around the skull and under the brain wall to clear it all out.The doc says that it will hopefully give me a couple of years without polyps.Worth the risk dont you think??Wouldnt it be nice to have a nice sleep at nite without having to get up.To not have to worry if a big bogey is hanging from ya nose coz you aint got a mirror handy to check and you have to ask ya partner..To feel that one day there will be more money into finding whats going on and that Doctors read a few more books about what we have and how it makes us feel so crap..I just believe that the answer is out there to all our health problems but we just arent bright enough where to look, Mother Nature I say knows..Well Im sorry if some of you have been bored but I thought I would let you know my story.Hope you all keep ya chin up and find that small thing that keeps you happy..Jay Ivey..You can look me up on facebook or on youtube under skodabluecat as i will put a video up of how my op went.... From: Helen <hpcharles63@...>Subject: Re: Finding what workssamters Date: Tuesday, 3 May, 2011, 21:36 I live in the UK and would love to talk to similar Samter suffers in UK for any advise and experiences. I am awaiting ENT appointment re polpys and to see an immunologyist re aspirin desense. Very frustrated by it all.Grateful for any help or ideas.Helen> > > From: R <myigloo2@...>> Subject: Finding what works> samters > Date: Tuesday, 3 May, 2011, 18:26> > > > > I believe that each and every Samter's patient is different and it is really a matter of trial and error as to what works for each individual. I have had the experience that doctors want to treat all patients the same and I have had to take things into my own hands along with what the doctors have told me to do and find all the right things that work for me.> > I have been off aspirin and prednisone since February and am doing great. I am still on Zyflo CR, Nasonex, Singulair, and Dulara.> > I have added sitting in a far infrared sauna daily to clean out toxins in my body, I do light yoga, I visit a chiropractor to help blood flow throughout my body and I take a variety of vitamins and minerals. I also sit in a bath of hot water and epsom salts a couple of times of week to sweat out toxins. These seem to work for me but not one of my physicians recommended any of these. It was up to me to try these things. I figured I needed to work in conjunction with my doctors if I wanted to get any real solutions and relief.> > Not being a very patient person, I had to force myself to take time with each of these things to see if they really did work. Results did not happen in the first few days. How long will all of this continue to work for me????that's the million dollar questions but for now it all seems good.> > I encourage everyone with the pain in the butt disease to try as many things as possible to find what works for you. It has taken me years of reading, researching, getting PO'd at doctors and finding new ones etc..... > > On another note: As many of us know Zyflo CR is very, very expensive. I happen to be one without insurance so it was imperative that I find a way to get assistance with this med. There is a program, Conerstone Cares, that has an application you can fill out and get assistance with this med. > > You can also do the same for Singulair and Nasonex, I just can't recall the name of that program at the moment.> > I wish the best of luck to everyone with this maddening and frustrating disease.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2011 Report Share Posted May 4, 2011 Not per se, but Samter's can still have side effects related to the eyes : - acute sinusitis can inflame the area around the optical nerves, - excess local steroids can also harm the eyes and sometimes lead to blindness, - excessive polyp growth can move cartilage by force, even small bones with time, and this can impact the eye socket, - complete ethmoidectomy can weaken the support of the eye socket, etc. Such side effects are however the minority, not the norm. > > > > > > > > > From: R <myigloo2@> > > > Subject: Finding what works > > > samters > > > Date: Tuesday, 3 May, 2011, 18:26 > > > > > > > > > > > > > > > I believe that each and every Samter's patient is different and it is really a matter of trial and error as to what works for each individual. I have had the experience that doctors want to treat all patients the same and I have had to take things into my own hands along with what the doctors have told me to do and find all the right things that work for me. > > > > > > I have been off aspirin and prednisone since February and am doing great. I am still on Zyflo CR, Nasonex, Singulair, and Dulara. > > > > > > I have added sitting in a far infrared sauna daily to clean out toxins in my body, I do light yoga, I visit a chiropractor to help blood flow throughout my body and I take a variety of vitamins and minerals. I also sit in a bath of hot water and epsom salts a couple of times of week to sweat out toxins. These seem to work for me but not one of my physicians recommended any of these. It was up to me to try these things. I figured I needed to work in conjunction with my doctors if I wanted to get any real solutions and relief. > > > > > > Not being a very patient person, I had to force myself to take time with each of these things to see if they really did work. Results did not happen in the first few days. How long will all of this continue to work for me????that's the million dollar questions but for now it all seems good. > > > > > > I encourage everyone with the pain in the butt disease to try as many things as possible to find what works for you. It has taken me years of reading, researching, getting PO'd at doctors and finding new ones etc..... > > > > > > On another note: As many of us know Zyflo CR is very, very expensive. I happen to be one without insurance so it was imperative that I find a way to get assistance with this med. There is a program, Conerstone Cares, that has an application you can fill out and get assistance with this med. > > > > > > You can also do the same for Singulair and Nasonex, I just can't recall the name of that program at the moment. > > > > > > I wish the best of luck to everyone with this maddening and frustrating disease. > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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