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Discussion / Re: Not coping and needing some one to talk to
« Last post by colinstares on March 22, 2011, 10:40:31 PM »
Hi tweetipie, Ihave just registered with this site, my name is colin, me and my brother,mother and grand dad all suffer with this hht and nose bleeds.We also live in wiltshire(swindon).
My brother had a very bad problem with nose bleeds and was refered by his gp to see Prof valerie lund at the Royal national nose,ear and throat hospital, she performed a rhinoplasty closure of both nostrils and this has changed his life altogether and he now leads an almost natural lifestyle.
My mother and I have also had this operation and believe me it has made a wonderous change to our lives, yes you have to get used to not smelling things through your nose but i soon got used to my tasting smells instead if that makes sense, but this is a small price to pay for not having to suffer from dibilitating nose bleeds and time off from work, I can now do most things and don't have to worry about carrying yards of tissues to bung up my nose when it bleeds. I had before this operation had my nose filled with liquid silicon to make plugs for my nose by my local hospital, but these irritated it so much that it was impossible to kep them in. I then took my brothers advice and got my gp to refer me to Prof lund in london(your local practice has to fund this i think, i might be wrong about this but your gp does have to make the referal, so keep on at them!!) Her email address is V.LUND@UCL.AL.UK drop her a line for information. if you or yor mum needs to talk, drop me an email at colin.stares@btinternet.com.
Good luck

Kind regards

Colin
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Discussion / sinus and chest agrevated by alcohol
« Last post by colinstares on March 22, 2011, 10:01:57 PM »
Hi All, My name is colin and I am 52 years young, after suffering very bad nose bleeds for several years I was introduced to Proffesor Valerie Lund of london royal free hospital, greys, london. She has performed a rhinoplasty operation (closure of both nostril openings) to my nose about ten years ago and this has absolutely changed my life for the better, ok so i have had to rethink my way of smelling(tasting) thing but i can tell you this is a small loss compaired with the life threatening nose bleeds i used to get. anyway the reason i am writting today is to find out if any one else has had this operation and if anyone has or is now getting sinus problems and dry coughs(since a bout of flu like symptoms before xmas) these are/seam to be agrivated by alcohol drinks ie beer, wine and cider(although a reduction in the consumption of these can only be benifitial!!).
I seam to remember that after my operation a follow up call/questionaire from the hospital staff included a question about coughs, i think.
Any info or reply would be helpful

Kind regards

Colin
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Discussion / Re: my flu nightmare
« Last post by colinstares on March 22, 2011, 09:44:22 PM »
Hi bob, I have just registered to site and am having a read of posts, like you i also had the flu jab this last autumn and have since had flu like simptoms, so you're not alone. I have been left with an annoiying dry cough that seams to be affected by beer and wine ie alcohol and wondered if anyone else has got or suffered similar symtoms, all the best
Colin
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Discussion / Re: 8yr old with mulitpul pavm's
« Last post by sammie1983 on March 17, 2011, 03:28:05 PM »
thank you very much just hoping others are in the same position x
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Discussion / Re: 8yr old with mulitpul pavm's
« Last post by Matt on March 17, 2011, 10:39:33 AM »
Hi, welcome to the site.
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Discussion / 8yr old with mulitpul pavm's
« Last post by sammie1983 on March 17, 2011, 09:33:19 AM »
My son is awaiting his genetic test results but he's had large pavm in right lower lobe that was treated in 2007 just b4 he was 5(sats were 74%) along with others(sats 96%) he had another op last year just b4 he was 8 they had to put more coils in to the feeding vessels of the large 1 hed had treated in 2007,along with other 1's that they found I'm looking for other people with children in similar situation he only started having nose bleeds just b4 his 2nd op?? 
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Discussion / Colostrum
« Last post by Lockwos on February 27, 2011, 04:34:16 PM »
Anyone ever heard of Synertek Colostrum?
I'm getting e-mails from them about how good colostrum is for reducing severity of nosebleeds and wondered if anyone had experiences of this stuff ?
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Discussion / Re: HHT and Arthritis Medications
« Last post by terry on February 21, 2011, 05:12:13 PM »
I'm recovering from an attack of gout, which is a form of arthritis affecting the big toe joint.  My GP & I decided against anti-inflammatories, but I was put on prednisolone, a steroid.  While taking the drug, my nose bleeds were significantly improved, but now I've stopped, they're back to normal.

Terry
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Discussion / Re: Not coping and needing some one to talk to
« Last post by lenny on February 19, 2011, 10:40:38 PM »
I would be more than willing, to speak with your mother, heart is prevalent in our family and I myself am a sufferer and can well understand how your mother is feeling. Both me and my sister have contacted fellow sufferers on the phone and by e mail and ,letter it really is good to talk. You can contact me any time you want by e mail at first, then take it from there whenever you want. I do hope your mothers condition improves in the meantime, ours is a very depressing condition, and talking to others does help. :D
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