Factor V Leiden also diagnosed after many blood tests.

[teldee]

I've previously posted about my son-in-law being struck with sudden and complete hearing loss in one ear with tinnitus. This was diagnosed as APN by a specialist in The Portland Hospital.

He has now seen a haematology specialist who has found evidence of factor v leiden which is apparently genetic which has implications for his children and siblings.

 He has now been referred to a Professor at St Thomas's and is on aspirin, but told he must have an injection to prevent DVDs before flying anywhere.

The bad news just keeps coming! He is trying to keep working and still dealing with bad tinnitus so he is unsurprisingly very down just now.

His job involves lots of driving and some fliying which is not ideal. There is nothing to do except offer sympathy while he waits for yet another expert opinion!

[Manofmendip]

Hi there.

Whom did your son in law see at The Portland Hospital?  I saw Peter Savundra.

Dave

[MaryF Administrator]

HI there and welcome, please do not despair it is quite normal with APS to have an injection if you take a flight over four hours long.  Please do have a look around the charity website,  there is a lot of information on there, and if you need specific information do please ask away, so we can help further.  It is far safer to be diagnosed than not so, people usually feel better on the right medication.   MaryF

[Lure2]

Hi, I agree with APsnotFab that he will probably be much better after anticoagulation.

We have too thick blood and the inner/middle-ear have exstremely tiny bloodvessels that need anticoagulation badly. I had a lot of trouble with my ears/eyes that are connected with the balance.

Best wishes from Kerstin in Stockholm

 

[Hidden]

I have APS and also Factor 2, which is slightly less dangerous than Factor 5. Is your son hetero or homozygous? Hetero means he has one copy of the gene, homozygous means he has two copies of the gene mutation.  I really agree with APSNOTFAB, and Kirsten that your son needs to be put on blood thinners immediately. There is a chance that he can regain some of his hearing. There is also a chance that being on blood thinners will prevent him from having a DVT or PE in the future. He is so young for having unprovoked blood clots. My clots were provoked by a work related accident and I am now on blood thinners for life. Since your son has one suspected clinical event (a clot in the ear causing hearing loss) and a positive antibody test, he should definitely be placed on blood thinners. I don't understand why these doctors wait for the second blood clot before they place patients on blood thinners for life. I hope your son gets better. I also have tinnitus in both ears and it can be very annoying at times. His tinnitus will unfortunately never go away if his hearing is permanently damaged. Once our hearing is damaged, the brain interprets the silence as ringing.  Best wishes.

J

[Debbweb01]

My tinnitus did go away as my vertigo did! Maybe cuz of ANTICOAGULATIon! I do have Sojerns and have painful throat all the time and terrible earaches now so I have no idea what that is! I c a Rheumy on May 9 who doesn't know much of the correct thing about Sojerns or APS, but see anothe Rheumy who may know more! I suggest you stick with this and Read Sticky Blood, by Kay Thackery! I was DX'd in October and Kerstin suggested it for me and it's been a great help! She herself has APS and it was written in I think 2092 or 2003! It's become a guideline for me and my sister whom also tested positive!