Any suggestions for tonsillectomy and WG?

[Palmyra]

Hello there,

Still somewhat new to the group, so I am feeling my way around the site and hope this is the appropriate place to post.

Without really fabulous suggestions for an ENT in the Austin, TX area, my daughter (24, diagnosed in 2006 @ Mayo, Rochester, initial involvement pulmonary,) is scheduled for tonsillectomy this coming Tuesday. Crossing our fingers on our choice of surgeons.

She is still B cell depleted from a Rituxin infusion Dec'09, and is still recovering from a sinus bilateral 'middle meatal antrostomies' due to an aspergilloma 'fungal ball' infecton of the maxillary sinus. Fortunately the boney capsule of the sinus was intact. Unfortunately she also has a chronic, likely bacterial infection of both tonsils, and a chronically inflamed cervical lymph node, so removal was recommended by fabulous Mayo ENT's. We just can't stay in Rochester long enough for the procedure to be done there.....(big heavy sigh...)

Any group experience with the fear of leaving a safe place and having organs removed elsewhere? Especially if it involves tonsils?

Big group hugs,
Jane in Texas, mom to Alison

[pberggren1]

My heart goes out to you and your family and Alison.

I would try to get it done at Mayo.

I am trying to get there myself. I have already talked to Dr. Speck's appointment person, Robin, a few times.

My cousine was down to Rochester recently and was dignosed with another form of Vasculitis called Giant Cell Arteritis or GCA for short. He was all over Canada for a year trying to get diagnosed and then decided to go to Mayo. He was diagnosed in 4 hours.

Again I would try to work things out so you can be at Mayo.

[Palmyra]

Hello (I don't know how to address you...pberggren1) :-),

We were just at Mayo for the sinus surgery, and all went very well. She was dismissed by Specks and the ENT department with the advice that the tonsil removal could be done off site, with watchful waiting for any further sinus involvement. With this disease, one grows weary and paranoid. I can't say enough positive words about Ulrich Specks. He has been a God send to the Vasculitis community at large, and saved my daughter's life.

Good luck to you, and your cousine (how curious that you both would be diagnosed with a form of rare vasculitis,) and I will keep the group at large posted regarding her progress. Robin is good...you will find the experience a relief. They really know how to get things done properly.

Jane, mom of Alison, Crohn's'99, WG'06

I certainly hope you can get into the clinic as soon as possible....you will find it amazingly efficient and unusual in that it is full of very sick people, and very smart, efficient

[Palmyra]

......you will find the hospital to be amazingly patient friendly. It is the way health care should be, no matter where one lives.

[pberggren1]

Thank you Jane for that info. I hope you and Alison can find a good ENT to do the operation close to home.

I am looking forward to going to Mayo to meet Specks.

[pberggren1]

Hi Jane:

Now that I know that you have the go-ahead from Specks and the ENT from Mayo I hope you and Alison can find a good ENT at home to do the operation. I forgot to mention earlier to try contacting the Vasculitis Foundation to see if they know of any Wegs ENTs that can do that surgery in your area. Good luck to you and Alison.