Baylor University

[GevaCarol]

I saw my urologist today, 4 weeks after he diagnosed me with IC. He doesn't really know how to treat me anymore, as my IC is a bit difficult. He is going to send me to the doctors up at Baylor University, in Houston, Texas. Has anybody ever been to these doctors? There are several urologists there that specialize in conditions of the bladder only. My doctor told me they would probably have to do a procedure on me, then let him continue treating me, or tell my doctor what to do. I'm glad my doctor is asking for a second opinion even though it means driving about an hour from where I live here in Texas.

[momw/ic]

I use the Baylor urologist group out of Dallas. My uro in particular has spent a great deal of time with Dr. Smith in Houston. You can't go wrong - they are awesome docs!!

[kate118]

I saw Dr. **** in Houston, I found him and his practice (especially his lead nurse) to be insensitive. He specializes in Botox injections. I have heard that this is a waste of time from other IC doctors, perhaps there are people here who have better insight on Botox treatment and will comment.

The other doctor told me that Dr. **** was too far into Botox research to really handle patient cases. Plus I understand you have to fit some "special mold of qualifications" to get Botox treatment??

I was upset that after waiting 6 weeks to get into Baylor that he would not support my short term disability claim paperwork, THEN I received a request for funds to further his Botox research program in the mail....yeah right!!

His nurse would not listen to my pleads of pain on the phone, I eventually ended up in the emergency room....she said "IC is not an emergency".

After my first appointment he put me on Elmiron etc. and said hopefully I would respond (I had already tried this drugs in the past, that is why I was there!)...I had no official diagnosis of IC, he declined doing a hospital hydro and had a "wait and see" attitude.

I ended up finding another urologist who was more aggressive about getting my diagnosis and helping support my disability.

[momw/ic]

Isn't a shame how "one rotten apple can ruin the whole bunch"? I don't know anything about Dr. **** so I can't speak to him specifically but I do know that the Baylor group in Houston is up on the latest treatments, meds and technologies. My doc in Dallas did train with him on the botox procedure. I actually had my first botox treatment on August 9th. For me, it has given me my life back - I have even returned to work. I am sleeping 8 hours at night straight through and peeing about every 4 hours during the day. It has been amazing for me but I know does not work that way for everyone.

The important thing with seeing a new doc is making sure that they can offer what you want out of your treatment. If I don't "jive" with the doc or any of the staff I know that it is a relationship that probably will not work. My current uro I totally love and I deal with an admistrative staff that is rude, insensitive and idiotic because I love him so much. I have never done this before because it has never been worth it but this time it is - he is the best uro I have ever gone to.

I guess my point is to encourage you to keep looking until you find that fit that works for you. Go into a new practice knowing what you would like to hear and what you would like to have happen. Don't be afraid to tell them what you want and ask if they will assist you etc...One thing I have learned in my years with IC is that you have to take an active role in your health care and don't just sit around and wait for people to treat you but you have to ask for help and if you don't know what you need insist on being seen until you and the doc figure it out. Any doc worth his salt will help you.

I try not to give specific advice about docs because I could have a terrible experience with one and someone else may have a wonderful experience with the same person. I just want to encourage you to look until you don't have to look anymore. I do know that medically the Baylor group is sound and they are on the cutting edge when it comes to treatments and medications.

Good Luck in your search. PM me if you have any questions!

[GevaCarol]

I finally have my appointment with the urologist at Baylor. Its with a Doctor Timothy Boone. But the appointment is 6 weeks away. I am going to call tomm to be on their call list for cancellations. I don't know what to expect, but I've already had a bladder tie-up and bladder dialation done. I understand might have to be done several times or surgically opened up permanently. Its been almost 7 weeks since it was done. If I get up every 2 hrs at night to go to the bathroom that is great, but I really don't like to do it.

Geva

[MimiG]

Kate, I'm sorry to hear you were noy happy with *** and staff. I've been considering going to Houston for botox treatment specifically from him if possible. I've heard good things about him. I'm having second thoughts now.

My Urologist wants to try Botox on me as none of the meds have worked for my urge and frequency. I think I'll just let him do the procedure even if he has not done it before. :)

Also, someone else posted about the "Baylor Group". What exactly is the groups name? Thank you.
mimiG

[CinSin]

Hi Kate,

I am sorry you didn't like Dr. **** or his nurse. I was specifically referred for trying botox after 10 other urologists and having exhausted all other treatment options available. Even though the botox does not address all my problems - it has been a life changing experience for me.

I will admit going to Baylor is not like going to most other urologists. Because Baylor doctors are also researchers most of the them are only there one or two half days a week.

I wasn't sure I really I would stay with Dr. ****after the first time I saw him but I believe it sometimes takes more then one visit before really knowing a doctor. I am glad I gave it more then one visit.

I hope you find the doctor and treatment that best works for you.

Cindy

[Cheries]

I am a patient of Dr. **** to a point. I know he is not really completely available to me and I have been quite unimpressed with his nurses and staff. They are very rude and insensitive. I had a urodynamic test this summer and was told that with my PFMDysfunction I did not qualify for for botox because it would cause too much retention. He suggested I get some physical therapy. It has taken me months to even get them to call me back let alone write a letter of medical necessity for me to get the therapy. I have finally given up on it. I really don't know who to go to. Who is this great uro you now have? It is hard because I can't afford to go to Houston every week for any type of installations etc., can't take elmiron because of major stomach problems. What to do?? I have tried to find someone around here but they won't take my original diagnosis from 95! They all want to do another hydro. I really dont' want to go through that uncessarily. Any suggestions?''Also, I saw Dr.**** years ago. He did nothing to help me, but perhaps he is different now. He never offered me any solutions. Nothing at all. Just deal with the pain. Very strange to me.