bleeds

[philbarto]

Despite my nasal closure permanently stopping nosebleeds and raising my blood count from 6 to 12 I am getting slight bleeds in the mouth usually just at the back of the teeth they usually start when I start eating but only last a few seconds but it is embarassing in public I wonder if any of you suffer from this and have had any treatments that are successful I have heard about lazer and also about a skin graft over the affected areas has anyone had these treatments and did itwork.
regards Phil B

[bob]

Phil,just wondered how you can breath through your mouth permanent,does it not dry up and make your throat sore,I know when my nose is full of blood clots I have a devil of a time trying to take in breath through the mouth for a day or so while it dries out,especialy during the night.
And do you loose your sense of smell totally.
RE   your mouth bleeds, my telan bleed on my lips and in my mouth at the least trauma,I just swallow it as it is never heavy or prolonged,dont think I would ever contemplate lazer on my lips or mouth.

All the best BOB........

[philbarto]

Hi Bob
        You do get a dry mouth specially whilst asleep got used to mouth breathing now there are awkward moments ie dentist etc but in general I cope quite well but it is far better than the nosebleeds . I have lost most of the smell sense and some taste sense as well although I have been told the taste will come back but it takes quite a while. i do not bleed from the lips but I have heard of success from skin grafts to give extra skin and protection to the affected parts of the mouth although the treatment is done mostly in the USA I have not heard from anyone over here yet having it done. I am due to meet a Prof Valerie Lund from the London ENT who knows of this treatment and also has a vast knowledge of HHT Im looking forward to meeting her and putting a few questions.
regards    Phil

[bob]

Hi Phil,pleased your choice of solution to our problem has worked for you,you would have thought that there would be some sort of spray or mouth rinse to help prevent dryness by now,but then again we seem to struggle to obtain something as simple as a nasal lubricant,or moisture maker to keep our nasals neutraly moist,I mostly use e45 cream on cotton wool,it works for me 75% of the time making the mucus more able to be got out without starting a major one.( a lady in the states uses preparation H in her nose and has done for quite some time),and swears by it.
I must admit to being a bit of a ludite when it comes to grafts and the like,heard to many failure stories for me to participate in anything that ambitious.
But that said I have tried  most of the options to no avail,many times over.
Nice to chat phil.
take care Bob......... 

[Tracey]

Hi everyone,

I have just fallen across this site this afternoon as was amazed by what I was reading.  So many others like me.  Wow.  I have had HHT all my life and grown up with it.  It is progressivly getting worse as I get older.  My nose has been cauterised so many times now that it would not be safe to do again.  Two years ago, I had the right side of my nose permanently sealed.

I saw my consultant this afternoon as was asking about grafts.  He told me that it is only really a short term measure, in as much as that the Telangiectasia, after a period of time, simply forms on the new skin too.  The flap of skin that my nose was sealed with two years ago has already got one small lesion appear, so I dread to think what the future holds.

I have been told that there is not much else that can be done, except for manage the bleeding as and when.  It will never stop completely. 

Look forward to chatting to like minded people.

Tracey

[philbarto]

HITracy,
           Have you ever consulted your GP about the possibility about nasal closure or Youngs procedure as it is correctly known. I have posted several topics about the subject as I have had it done and as far as the nosebleeds are concerned I have not had a single one since the procedure was done eighteen months ago. I would be delighted to offer further info should you require it

regards Phil

[Tracey]

Hi Phil

Yes, I had Youngs Procedure done on my right side nearly 2 years ago now.  It has taken some time to get used to the breathing and the dry mouth, especially at night time.  There is possible talk of doing the same to my left side.

I do still get bleeding from the side that has been closed, but it either trickles, or sometimes even runs down the back of my throat.

Also, today, the consultant noticed that there is a new telan that has appeared on the flap of skin that he used to close my nose off, so even that is not going to be a permanent solution for me.  It has made an improvement for a while though.

Tracey

[philbarto]

HHT Foundation International | HHT Overview
Hi Tracey the above address is a link to an American HHT site with lots of info and treatments incuding skin grafts etc . They seem quite positive in the fact that the telan does not return back on the skin grafts and it is very successful ,anyway it is worth a visit just to have a little look and form your own opinion. There are lots of links and even links to HHT clinics both in this country and Ireland you can contact them and they do reply to any queeries you may have. Good hunting
Phil

[Tracey]

Thank you for that Phil,

The link you posted has been very helpful.

Tracey 

[kathy]

Hi to everyone...its WONDERFUL to know that there are other people to share thoughts, ideas and their feelings on HHT.  I would like to let you know that I recently discovered that using a cream/ointment for haemmorhoids is particularly helpful when bleeding like mad.  Being an Aussie, it gets mighty hot here - which is a trigger for the big bleeds.  As soon as the bleeding starts, put some cream (like Anusol or Rectinol cream) on your pinky and try to deposit a blob as high as possible.  If that method doesn't appeal to you, put a large blob on a cotton wool ball and insert.  When its bleeding badly, it may need a couple of attempts but it is FANTASTIC and I realy hope it works for you.  I figured that if it works for your veins "down there" it possibly could work in the nose.  It seems to coagulate the blood.  Another method is using Kaltostat (a pharmacy can check their MIMS manual for a similar product in the States or UK)  It is a type of sterile gauze that is used for bleeding wounds, mainly during surgery but it also is used for nose bleeds.  It comes in flat gauze squares in varying sizes but the best shape is approx. 5-6cm long (similar to a tampon) and you can insert it firmly into your nasal canal.  To remove, just squirt a little saline in as a dry pack will start it all over again.  Good luck and thank you to everyone, especially Matt for starting this site!