Multiple Dr's?

[vdub]

Even before I was dx'ed and was having all the sinus issues, my ENT did surgery to open all the channels in my sinuses. I thank him every day when I notice I'm actually breathing through my nose. One of the most worthwhile ops I've had.

My least favorite Dr. on my team is my ENT. He likes to stick that tube in my nose and starts to vac my sinus'.

[amann8506]

I hate that part! It's the worst!

[MikeG-2012]

My least favorite Dr. on my team is my ENT. He likes to stick that tube in my nose and starts to vac my sinus'.

My FAVORITE doc is the ENT, because he does a thorough cleaning of the sinuses every two weeks. When I leave there, I do have some discomfort for the rest of the day and into the evening, but the lasting effects of the cleaning far outweigh the discomfort. I have an extremely high pain tolerance, so to me, it's nothing anymore to have him spend 20-30 minutes in my sinuses with the suction and forceps cleaning out the crusting.

To each his/her own, I guess! (-8

[John]

Phil
In seeing your Ophthalmologist did he have any experience with WG? I am concerned about my eyes being blurred, subject to bright lights, floaters, and streaks of light. I went to an ophthalmologist before I knew that I have WG and he said the floaters were high protein levels. My RM wants me to go to Cincinnati Eye Inst. to have it checked out. Do you think I should ask if any of the dr's know about this disease before I make an apt.? I am sure there is as I don't think my RM doc. would recommend it. Can you give me some feed back on your experience?
Thank you and lets fight WG
John

[pberggren1]

John

A couple Ophthalmologists I have seen have a few other Wegs patients but would not be considered experts because Wegs involvement with the eye is very rare.

I would maybe see if you can get into see one at Cleveland Clinic that could be recommended by someone like Dr. Langford.

The reason I started seeing the one I see now is because my retina was bleeding. He is a retina specialist. So when my gets bad I get injections of a cancer drug called Avastin into it.

They will usually do some scans and pictures of your eye. If he is a retinal specialist then they will have a retinal scanner. But usually there are not many retinal specialists out there.

[sectech1]

I have a pulmonary doc and an oncologist for my treatment. I did see an ENT and an infectious disease doc for a checkup but don't have to see them again unless something comes up!