Recent Posts

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71
Discussion / Re: Not coping and needing some one to talk to
« Last post by Carol Lane on September 09, 2010, 07:52:24 PM »
Hi,
I would be happy to talk to your Mum.  I live in Norfolk (England) and my HHT started from pregnancy 33 years ago.  I have nosebleeds and GI tract spots that bleed chronically, making me very aneamic.  How bad are your Mum's nosebleeds?  If you want to send me a message with a phone number and convenient time, I would be happy to talk to your Mum.
Regards.............
72
Discussion / Re: Not coping and needing some one to talk to
« Last post by stevesmash on September 08, 2010, 04:27:07 PM »
Hi, Looks like time to change your GP. There are a few procedures to try before Young's. If you cant get referred to Hammersmith try Prof V Lund at the Royal ENT in London. Your GP must refer you for further treatment at your local ENT.
I have had Laser surgery & Nasal Skin graft along with Tranexamic Acid pills and my condition is very much under control and staying in full time employment now the anaemia has been addressed.
Hope this helps.

Cheers Steve
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Discussion / Re: HHT - bleeding spots in your mouth and between teeth
« Last post by stevesmash on September 08, 2010, 04:17:08 PM »
Hi, Hope you are ok now. I have had quartery in the past but this only exasperated the situation. Get some tranexamic acid in your system which helps stem the bleeding and get referred for laser treatment (IE Prof V Lund at the Royal National ENT in London).
The Tranexamic takes a while to do its job but it does stem the flow & frequency.

Good Luck.

Steve
74
Discussion / Re: HHT - bleeding spots in your mouth and between teeth
« Last post by Lockwos on September 08, 2010, 04:02:19 PM »
Hi Tracey

I have a small telangectasia on my gums which consultant tried to Laser, it haled a bit, also they gave me a tranexamic acid (Cyclokapron) mouthwash which stops the bleeding quickly when it does set off -- every time I brush my teeth basically !

hope this might help

regards

Steve
75
Discussion / Re: Not coping and needing some one to talk to
« Last post by tweetypie on September 07, 2010, 08:20:06 PM »
Thanks Terry
Just a few questions
Have you used the inserts yourself ? if so have they helped ?
Are they made especially for the individual ?
Isn't plastic a bit hard ?   
Thank you
Michelle
76
Discussion / Re: Not coping and needing some one to talk to
« Last post by terry on September 07, 2010, 05:04:56 PM »
There are plastic inserts that can be put inside the nose - I couldn't have it done as I have holes between my nostrils due to previous surgery.
She really should insist on being referred to Hammersmith - perhaps another doctor in the practice would be more sympathetic? - or transfer to a different GP.  We all have the right to change GP without giving a reason.
Terry.
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Discussion / Re: Amicar (aminocaproic acid)
« Last post by terry on September 07, 2010, 04:53:40 PM »
What dosage do you take, & how long have you been taking it?
Terry.
78
Discussion / Re: open letter
« Last post by Matt on September 06, 2010, 01:57:40 PM »
True, it can be annoying, especially as it's likely to be all documented in the notes - I can only assume it's because some that talk to you about it don't have any experience with dealing with it before as it's supposed to be rare. I wish you luck in getting things sorted and are out of there as soon as possible. :)

Unfortunately I am unable to report back on the cream as of yet... as I have misplaced it and so need to find it again :o
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Discussion / Re: young's peocedure
« Last post by Erica on September 05, 2010, 10:35:50 PM »
Hi Tracey

Still hating it. At a visit to my ENT doc she spotted polips. Great I thought, i'll be able to breathe! Tried the steroid treatment but it made the bleeds from left nostril worse. Went in to get laser on the polips but they had shrunk! The doc couldn't see any blockages or reasons for not being able to breathe. She said she would reverse the proceedure, so I have until Dec to decide what to do. How long was it before you "felt better"
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Discussion / HHT - bleeding spots in your mouth and between teeth
« Last post by Tracey on September 04, 2010, 08:58:36 PM »
Hi All ... HELP!

I am currently sat in my bed in Torbay Hospital going out of my mind.  I came in on Wednesday for planned surgery in my mouth (it is now Saturday).  I had the op on Wednesday, and was waiting to be discharged on Thursday when the little bleeder between my top two front teeth decided to show everyone that it still could get the better of me by bleeding all over me and all over the day room where I was quietly waiting.  :-[

Since then I have been bleeding every day and throughout the night.  The docs just don't seem to be able to make their minds up on what to do with me.  The only two consultants that know me and anything about HHT are away.  :-X

I am unable to eat.  Everything and anything appears to be setting off a major bleed.  I am really suprised that my nose hasn't decided to join in.

The only way forward I can see, is for them to remove my two front teeth that are preventing anyone from cauterising the little bleeder properly, giving it a bloody good blast of cautery and then give me two false teeth to go in the gap.

Does anyone have any suggestions?

Tracey  ;)
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