Looking..ENT in Austin, TX

[Palmyra]

Good morning!...I am new to this support group, but recognize a few old names ...Sangye

My daughter was diagnosed in 2006, and has been treated at Mayo, Rochester and seen all the experts there. A prolonged remission has not been established, so she is currently treated with Rituxin and has infusions approx'ly every 6+months.

Because of B cell depletion, she has had several infections. Most recent trip to Mayo revealed a fungal ball (mycetoma, Aspergillus family) which was surgically debrided while there. She has a chronically infected tonsil and cervical lymph node that is related to the tonsilar infection.

The tonsil needs removal, and we are looking for a local ENT to do the surgery (a scary prospect considering one such local had just missed the fungal infection).

Any suggestions for an ENT in Austin that really will work with a VF specialist? Would really love a better pulmy and GP as well!

Thanks,
Mom Jane (aka, Palmyra) daughter is 24, Crohn's'99, WG'06

[Sangye]

Hey Jane! Nice to see you here.

We have some Texans in the group and I'm hoping they'll be able to find you some good local docs.

How many rounds of rtx has she had? Are all of them the 4 or the 2 infusion protocol? 2006 must have been a bad year to be dx'ed. That's when I was dx'ed as well, and I'm on rtx still trying for remission.

[Palmyra]

Glad to be here Sangye, and always on the look out for good, new information. I will be waiting to hear from those fellow Texans.

Alison has had four rounds of rtx, all approx'ly 6-12 months apart. She appears to flare beyond 8-9 months. They have all been the 4 infusion protocol. We stayed away from Mayo a bit too long, and Dr Specks is now recommending, for Alison, the 2 round protocol for maintenance at ~6 month intervals, or upon B-cell rejuvenation. She had a small flare last November that resulted in some infiltrate formations in her lungs, but rtx quickly zapped it, without the need for pred. She had significant joint issues, which resulted in dual carpal tunnel release surgery early in 2010. Now these infection issues...all in all, she is doing pretty well in containing disease activity with flares limited to the lungs. Mayo did not think there was any WG involving the sinuses, and kidneys look good.

I am sorry you are struggling with obtaining remission. Other organs involved? Are you on other drugs besides rituxin? And which dosing protocol are you on?

Best wishes,
Jane/ Palmyra

[Sangye]

My main involvement is my lungs--tendency to hemorrhage. I started on the 4-dose round of rtx last October, which stopped the hemorrhaging. I had to go back on pred, but "only" 4mg. The massive pred I started with in '06/'07 seems to have made me incredibly sensitive to it. 4mg acts like 40mg.

I did a second round of rtx in March and started tapering the pred by 1/4 mg per week in April. The taper was going well until last week when I dropped below 1mg too fast. I've felt horrible again so I've bumped it back up to 1mg for now. For almost 3 weeks there I felt the best I had since it started in 2005. I hope that comes back. I'm sure it will, just feeling rather depressed about feeling so awful again today.

[Palmyra]

I am sorry for the wave action of this disease, and what that does to one's emotions. You are very smart Sangye, and I hope you will be feeling well again very soon. Only normal for emotions to be tossed about in a hurricane, but still, this disease makes one endure so much more than mere mortals know about. Good to have forums like this to share the burden. I hope tomorrow leaves you feeling better and gives you some sunshine to enjoy.

I had some new ideas on finding a 'local' ENT for my Alison...I will call on a few area oncologists. Cancer is common (unfortunately so,) and their patients must also get opportunistic infections. So, off to call on some Austin area oncologists for referrals. Good idea, no?

Peace and sweet dreams to all,
Palmyra/Jane, mom to Alison

[pberggren1]

Austin should have at least one good ENT because I know it is one of the top ten most populous cities in the US.

[woodsman1972]

I hope you have found a good ENT up in Austin, but, if not, I am from Houston. My ENT is the one who initially diagnosed possible Wegs in my and sent me to a Rheumy right away. He very well could have saved my life since I thought I was dealing with a simple sinus infection. He is considered one of the very best ENT's in the country. His name is:

Dr. Samuel Weber
(713) 795-5343
The Center for ENT Hearing Services Audiology Ear Nose Throat Surgery Houston Texas

I figured a two hour drive to Houston's medical center wouldn't be too bad if you can't find what you're looking for up there. Good luck.