G'day Mate.. From Australia,Land down under

[Dutchie]

So where to start?

About April 2019 I developed what the Dr through was a sinus infection after taking antibiotics the issue didn’t go away I also got a blocked nose…and I mean blocked like there is a plug up there.
I was told it was nasal polyps so we went down that avenue. Until they realized it wasn’t polyps.
Doctors didn’t know what I had. In walks a specialist I have never seen before & noticed I had what I now know as saddle nose. She suspected Wegener’s and I was sent for a biopsy which came back positive. So I had a completely blocked nose, cant smell, can’t taste and have a headache that has never gone away. It’s been over a year and the headache won’t go 24/7. The pain score I give it is a 6/10 so enough to really get you down.
Was at about this time my wife had a miscarriage at 8 weeks we were both devastated.
Fatigue was really hard on me & found I needed to nap throughout the day, as the headaches would increase in pain but never decrease below my baseline which is 6/10.
We now find out that we are pregnant again..Woo Hoo.
Time goes on and I’m waiting for surgery while taking my Methotrexate & Steroids.
I do have to have plastic surgery on my nose to build the bridge fix the perforation. They are inserting plastic tube’s into the nostrils held together with a skin graft. Hopefully being able to breathe again thru the nose the flow on effect will stop the headache or at least take some of the pain away.
So with all Covid lockdown as I live in Melbourne, Australia, the stress of the illness with the never ending headache just if that wasn’t enough stress on April 16th this year my wife gave birth to triplets 1 girl & 2 boys. Wow it’s crazy.
I have been seen to about the headaches & it’s nothing else like a tumour or the like.
Is there anybody else having ongoing headaches?
Signing off there, hope to speak to you again. Seems like a very good site so I will be dropping in quite often.
Thanks
Have a great day.
Dutchie

[andrew]

Dutchie!!! There have been a few of my fellow Aussies sign up here recently. Welcome! Those headaches are horrid. I hope that the surgery fixes it. When is it happening? I'm glad Melbourne is opening up again but I assume you probably don't go out much due to 2020?
Congrats (is that the right word??) on the triplets. Wow that's three times the fun :)

I don't have the headaches myself but I hope someone else can share some insights on this.

[Pete]

Dutchie

Welcome to the club nobody wants to join. Congrats on the triplets!! Hope they are doing well.

Several folks on here have saddle noses. I’m tagging Alysia and annekat and hope they’ll chime in soon.

I’m almost ten years in. Thanks to an early diagnosis and effective treatments, I lead a pretty normal life. I had ear, lung, and sinus involvement at onset, but suffered no lasting damage.

Here’s hoping all goes well for you!!

[Alysia]

So where to start?

About April 2019 I developed what the Dr through was a sinus infection after taking antibiotics the issue didn’t go away I also got a blocked nose…and I mean blocked like there is a plug up there.
I was told it was nasal polyps so we went down that avenue. Until they realized it wasn’t polyps.
Doctors didn’t know what I had. In walks a specialist I have never seen before & noticed I had what I now know as saddle nose. She suspected Wegener’s and I was sent for a biopsy which came back positive. So I had a completely blocked nose, cant smell, can’t taste and have a headache that has never gone away. It’s been over a year and the headache won’t go 24/7. The pain score I give it is a 6/10 so enough to really get you down.
Was at about this time my wife had a miscarriage at 8 weeks we were both devastated.
Fatigue was really hard on me & found I needed to nap throughout the day, as the headaches would increase in pain but never decrease below my baseline which is 6/10.
We now find out that we are pregnant again..Woo Hoo.
Time goes on and I’m waiting for surgery while taking my Methotrexate & Steroids.
I do have to have plastic surgery on my nose to build the bridge fix the perforation. They are inserting plastic tube’s into the nostrils held together with a skin graft. Hopefully being able to breathe again thru the nose the flow on effect will stop the headache or at least take some of the pain away.
So with all Covid lockdown as I live in Melbourne, Australia, the stress of the illness with the never ending headache just if that wasn’t enough stress on April 16th this year my wife gave birth to triplets 1 girl & 2 boys. Wow it’s crazy.
I have been seen to about the headaches & it’s nothing else like a tumour or the like.
Is there anybody else having ongoing headaches?
Signing off there, hope to speak to you again. Seems like a very good site so I will be dropping in quite often.
Thanks
Have a great day.
Dutchie

Welcome Dutchie and congratulations for your triplets :hug3:

Like Pete wrote above, I do have a saddle nose because of WG but I am not going to fix it soon or probably ever. One needs to be in remission at least a year for that (which I am not) and also I live in Israel and wg is so rare here that no surgeon here is experienced in this kind of surgery.

I feel ok with my saddle nose, I have earned it decently, "by blood, sweat and tears" literraly :cool1:

I think you need to check your headaches, as WG can affect the brain and causes them although they might simply be the result of the sinus infection.

The saddle nose surgery is only cosmethic. I tag mishb who did a more useful nose surgery. She also lives in Melbourne so she can help you greatly.

[Dutchie]

@Alysia

Thanks for your input. I was reading your post to my wife. She said i'm not having the surgery to fix the saddle nose. Surgery is solely for giving me the ability to breath thru the nose which they hope fill fix or minimize the headaches.
As my GPA is still quite active fixing the saddle nose would be useless.
My apologies for that misleading piece of info.
We are hoping for surgery before Christmas,but don't yet have a date.

Good day to all
Dutchie.

[mishb]

G'day Dutchie and welcome to the group that none of us really wanted to be in, but are very thankful that it is here for us.

Congratulations on the birth or your babies :hug3:

Stress plays a very big part in the life of vasculitis, and you have certainly had some stressful times.
Stress and lack of sleep can also cause the headaches, but so can vasculitis of the brain.
I'm not sure if this is allowed for many people due to other health issues, or medications, but when I wasn't on doses of 5mg or higher of pred, then I would take some Aspro Clear (brand name). This is the only thing that would settle my joint pains, and clear the headaches.

Thank you Alysia for tagging me. I'm not so sure about successful nose surgery. I've had a biopsy and two surgeries and I still have no sense of smell.
scar tissue from the biopsy and surgeries has also closed my sinuses back over and I figure that breathing through the nose, is just so overrated these days anyway.

Dutchie, with newborns in the house (not even triplets) I wouldn't be in a hurry yet, to get the sense of smell back :crying::tongue1:

Lockdown due to covid was a very tough thing to do, for many people. I personally felt so much safer being indoors nearly 24/7
Now that we are through the worst of it, I'm still not in much of a hurry to venture out, although going for long drives will be good, instead of our 5k limit.

Take it easy, be kind to yourself with more relaxed stress free days, and enjoy your bubs.

If you are on Facebook, we have a Vasculitis group for people from Australia and New Zealand.
If you are not already a member, you are more than welcome to join.

Any questions, please ask away. We are all here for you.

Until then

[Dutchie]

Thanks Mishb for your info,


I also had the biopsy on my nose & the scare tissue is what has caused the block the same as you had explained. My hope was after they cut thru the scare tissue & insert the tubes so i can breath i was really!! hoping i would be able to smell again. I'm sure i don't need to tell you that not being able to breath thru the nose really affects your taste. I can taste but it's very very slight and sometimes i think it's muscle memory that remembers what things taste like.

So Mishb you said that after your surgery to have the nose cleared did it close up again?

Thanks everyone for your input.

Speak soon
Dutchie

[mishb]

Dutchie you certainly do have rareness following you

I'm so glad your wife and babies are doing well.


Yes, the scar tissue on the right side, closed back over probably within 6 weeks of the last operation.
The ENT said that they could go back in again and be a lot more aggressive with the amount of tissue that they remove, but I decided against any further operations. I'm quite fine with being able to breathe through one side. Still no sense of smell though.
I do not have a saddle nose, so did not need an operation for that.

Best of luck for your next appointment, and I hope you can find a way to get some relief from the headaches.

Take care, and