Vertigo

[Al]

Rose, vertigo can have a number of causes. Sometimes there are mechanical impediments in the inner ear, but vascular anomalies are also possible (those of the brain are definitely worth knowing about; come to think about it, vasculitis anywhere is worth knowing about). The latter is presumably why the MRI is in order. The intermittent aspects in your case suggest this is worth looking into. Still, one rap on Wegener's is its association with things like ear blockages. I would say that this possibility shouldn't be ruled out. Vertigo may be mild, fleeting, and not easily explainable. Yet it may also be revelatory and important. Keep on top of it!

Al

[ScreaminMeanie]

Al is so right. I did have an MRI after the first few attacks. It showed nothing, which is what led me to the diagnosis of Meniere's disease. Two things that have helped me are: 1. lower sodium diet, and 2. avoid aspartame like the plague.

[Rose]

UPDATE

I have just received the result of my MRI scan which I had done on Monday. Seems I have matsoiditis on both sides as well as an ulcer about the 15mm diameter in my nasal cavity. MY ENT doctor thinks it is probably vasculitis as an infection would have affected my hearing and that seems OK but he is covering me with antibiotics just to be safe. I have also to stay on 40mg of pred daily, commenced nose drops and cortisone nasal irrigations twice daily as well as bactroban to my nostrils.

I am still very "wooly headed", still have balance problems, still have sinus fullness and fleeting ear pain though since upping the pred I have not had another episode of vertigo....so far at least.

This is my first flare since diagnosis and treatment. I told my Rheumy I thought I might be flaring after suffering symptoms for about 10 days. He checked by blood which came normal as did the ANCA test which was done last week. Both rheumy and nephrologist told me I was not flaring and did nothing! There are no vasculitis centers and so no WG experts here in SA. Luckily I am fairly well informed thanks to all on this site!!!

[Al]

UPDATE

I have just received the result of my MRI scan which I had done on Monday. Seems I have matsoiditis on both sides as well as an ulcer about the 15mm diameter in my nasal cavity. MY ENT doctor thinks it is probably vasculitis as an infection would have affected my hearing and that seems OK but he is covering me with antibiotics just to be safe.... Both rheumy and nephrologist told me I was not flaring and did nothing! There are no vasculitis centers and so no WG experts here in SA. Luckily I am fairly well informed thanks to all on this site!!!

Good you got this dealt with, Rose. Mastoiditis is nothing to sneeze at, regardless of the cause. Hearing is a very useful sense to keep around! Did they take a culture? This can determine bacterial content. As you consult with those doctors who should know better, it is valuable to remember that flares come in many forms, not all of them identifiable from ANCA tests. In fact, a bacterial infection can sometimes trigger ANCA proliferation, so it is advisable to stay on top of the situation!

[elephant]

Your ENT seems to be on the ball, can he recommend another doctor who is knowledgeable about WG. My CT scan of my head demonstrated mastoiditis, and I too was given antibiotics but I know WG was behind it all. I wish you the best tring to find a decent Doctor who is knowledgable.

[Rose]

Did they take a culture? This can determine bacterial content.!

No...where would they get a specimen from? Dont have any ear discharge infact have had only fleeting ear pain and no hearing loss and this is why he thinks the inflammation is vascular...and the fact that it is in both mastoid bones. Just a lot of weird facial, sinus sensations, woolly headedness, unsteadiness on my feet and the vertigo...not for a while. Treatment started about 28 hours ago and I am feeling and looking so much better.

[Rose]

Your ENT seems to be on the ball, can he recommend another doctor who is knowledgeable.

We actually touched on this. His response was there are no WG experts here in SA because of the set-up of the health system. it is either private doctors running their business or the state hospitals service run by the government for those who do not have insurance and this is very underfunded. The doctors there are from the private sector working for less for a few hours per week. I did go to a rheumatology clinic at one time (was having problems with insurance paying for me medication...another story!) and I was the first WG patient there in over 3 years! I waited over 5 hours to see a doctor. It was a very rushed appointment and had instructions to come for a follow up in 2 months? What was I do do should a problem arise. My husband says he would rather go bankrupt and we never went back!

The insurance is now paying but we are almost bankrupt in the meantime. I had to laugh when the ENt then suggested that I go and visit my daughter in the USA and pop into one of the vasculitis centers and see one of the experts there. We are living in different worlds!!

[Al]

We actually touched on this. His response was there are no WG experts here in SA because of the set-up of the health system. it is either private doctors running their business or the state hospitals service run by the government for those who do not have insurance and this is very underfunded. The doctors there are from the private sector working for less for a few hours per week. I did go to a rheumatology clinic at one time (was having problems with insurance paying for me medication...another story!) and I was the first WG patient there in over 3 years! I waited over 5 hours to see a doctor. It was a very rushed appointment and had instructions to come for a follow up in 2 months? What was I do do should a problem arise. My husband says he would rather go bankrupt and we never went back!

The insurance is now paying but we are almost bankrupt in the meantime. I had to laugh when the ENt then suggested that I go and visit my daughter in the USA and pop into one of the vasculitis centers and see one of the experts there. We are living in different worlds!!

Rose, I am quoting your entire post in my reply, as you touch on an important issue for all of us: The vastly different experiences in medical care among us in different parts of the world, and how, even with insurance (and many here have no, or very inadequate coverage), many of us face financial hardship. I realize that political realities make whatever we say here unlikely to have a major impact; still, I hope that this becomes more widely discussed.

Al

[HopeinTN]

Wow. Good info to have. I was just diagnosed last month. After reading these posts, my Wegs may have started far before I realized. I had a crushed Eustacian tube in my ear for around 5 months back in 2008 and no clue as to what caused it. Hmmm, something to share with my doc. Thanks all and good luck Rose! Vertigo is horrible and I also found that the Meclizine saved me.

[Dirty Don]

I, also, have a 'bad' Eustachian tube...but it is enlarged producing a 'wind tunnel' effect. Doc is going to try a new procedure she learned elsewhere for the tube. She will inject collagen into it, making it smaller in diameter thus reducing the 'windy' effect in my head! Hope it works, a little different than others I guess from what I've read. Very interesting. Best of luck Rose...be persistent, keep at it!