Will be seeing my doctor to if I have Wegeners

Hi everyone,

First I want to apologise for the long essay.

I'm new to the forum my mum found out about this website searching online to find out why I might be struggling.

I have a silicone septal button which was put in 2015 due to a perforation from a blood clot in my Septum and the bone being exposed where the skull shows where the nose is formed if you know what I and basically the part that separates the nostril inside was none existant and had constant nose bleeds.

I think it happened in 2008 after having major surgery to have a 7kilo ovarian cyst removed and left ovary and fallopian tube removed. I had blood inside my nose and constant nose bleeds afterwards but when I asked if it was due to the surgery no one would answer me. I carried on not knowing what was going on.

In 2015 the nose bleeds started getting worse and having to pull big blood crusts from my nose and they were shaped like a cresant moon and when I looked I thought I can see the bone showing from the skull and then realised I had a big hole were the separation between the nostrils should of been and could stick my little finger through.

I seen an ENT specialist and they said you need surgery but they couldn't fix the perforation because it was too big so they said we'll put a button in. I found out it was caused by a blood clot bursting in my nose from the major surgery in 2008.

It worked for a while but now I'm getting crusts, blood and green mucus inbetween the button and when I wake up in the morning I have green mucus at the back of my throat and I have to remove it manually.
I don't know if I have Wegeners so I'm going to see my doctor tomorrow but I wanted to know if anyone has gone through anything similar and again I'm sorry for the long essay.

Thank you for reading and listening.

Hi Hazeleyes,

When you see your doctor, ask about the possibility of vasculitis in general and GPA/Wegener’s in particular. Perhaps that will get you a referral to a specialist who can accurately diagnose your condition and treat you properly.

Let us know how it goes. BTW, where are you located?

Thank you I will I'll write it down so I don't forget. I'm in Runcorn in England.
I've been going mad with having to constantly have packets of tissues and telling new people I meet why my nose sounds funny when I sneeze or blow my nose.

@Geoff

Perhaps your guidance will help Hazeleyes...

I had lots of nose bleeds and sinus trouble leading up to getting diagnosed with WG. I was diagnosed with a sinus biopsy done by an ENT. This biopsy is the gold standard for diagnosis of WG. It does not work in every single case but if the biopsy IS positive you can be sure you have WG. Having an ENT with WG experience will be very valuable to you- as it is with me.
I'm betting you do a sinus rinse with salt/soda. If you have sinus infection there is antibiotic powder that can be added to the salt/soda. I use Levofloxacin.
Glad you made it here.

Welcome to the forum.

I had years of nose bleedings and huge crustings and also developed saddle nose. 2 nasal biopsies turned out negative for WG - false negative - because I do have WG.

Do you have other symptoms ? Like: coughing, shortness of breath, gums bleedings, joint pains, ears pains and infections, fatigue, rash etc.

Ask for blood tests. The most important to check and follow is creatinine to make sure your kidneys are safe. Also ask to check your C-anca and pr3. Mine are positive when my wg is active. But some of us have them negative.

My wg dr. From Israel consult with prof. Jayne in UK, in Addenbrook (spelling?) So ask to consult with him.

Tagging @Jayne 14 . She might help you. Also @freakyschizogirl and @Geoff .

Hi hazeleyes. Certainly sounds like you are on a similar path to me. I don't come on this forum much anymore but if you need someone to talk to please direct message me and I would love to offer you any support I can :)

Hi, hazeleyes. Everyone above has given good advice. I hope you do get in touch with some of the others in England, they are great people and I think most of them go to Dr. Jayne. But they may know of some other good docs, too, or support groups you can join in the U.K. I also had all that yucky stuff going on in my nose and sinuses for a couple years before diagnosis, lost my septum and got a saddle nose, very suddenly, it seemed, and soon after got a positive result from a nasal biopsy, so knew I had Wegener's, also called GPA. We tend to call ourselves Weggies, and the disease Wegs. I'm glad you found us, and please keep us informed as to your progress in dealing with this. It helps so much to talk to others who've been there and are dealing with the same issues. Best wishes that you get some answers.


Sent from my MotoE2(4G-LTE) using Tapatalk