ICers in Oklahoma

[momw/ic]

Who do you see for your treatment? I recently moved to OK from TX and my doc has recommended a doc named Michael Schwarz in Oklahoma City. Anyone know of him or have someone you can recommend?

[Madi's Granny]

I live in Oklahoma City and can really recommend Dr. Daniel Culkin at the OU Medical Center. He's a litle hard to get to see but is really worth the wait.

[momw/ic]

Is he a uro or pain doc or what? Dr. Schwarz is a pain doc which I need but I also need a uro or uro/gyn who does the interstim. I have had my interstim long enough that the battery will probably need to be replaced in the near future so I thought it would be good to start off with someone who could replace it when the time comes. That is not definate qualifier though.

Thanks for the name!

[Madi's Granny]

Dr. Culkin is a uro who does Interstims. He placed mine and I have had to only have 1 adjustment in just over 2 years. He has an associate who does the Insterstim and from what I heard he's quite excellent too. I've heard of Dr. Schwartz. He is quite excellent too.

[jen48446]

I'm in Sallisaw, closer to Arkansas, feel free to contact me :smile tee
:angel::cat:

[meissabarham]

Hello I know the posts are little older but I thought I would share I am from southwestern oklahoma. I currently use Dr. Zachary out of Altus, OK. So far he seems to be really nice and he listens to what I have to say. Unlike some doctors. Anyways I just wanting to say hi and if any of you ever need to chat I'm here. :)

[jen48446]

Meissa I'm not sure where you're @ however you're welcome to find me on Facebook or send me your cell, I'm a texter & signed up with Facebook mobile:)

:grouphug::angel::cat:

[meissabarham]

Jen I am from Granite which is a small town in southwestern oklahoma. Where are you from? I'm on facebook under Melissa Vowell Barham.

[jen48446]

Melissa,

I'm in Sallisaw, 30 miles from Ft. Smith, AR. I sent you a Facebook request:) We're in southeastern OK:)

:cat::grouphug::angel:

[meissabarham]

I accepted your facebook request. I know where sallisaw is, its been awhile but I've been there. :) My cell number is on facebook if you ever want to chat.

[ICNPersistent]

I highly recommend Dr. Parkhurst. His office is located on Thompkins Rd. in Bethany, off of 23rd Street. He is a compassionate urologist who is loved by his patients. He provides all innovative forms of treatment for IC. The Parkhurst Research Organization, which is attached to his practice, is also very active in the area of research for IC treatments etc.

I've been in his care since March 2009 when I contacted him at home, even before I met him in his practice. I was enrolled in a research program for IC meds. I experienced a full blown flare. I called Dr. Parkhurst and when he called me back, we talked for more than an hour while I could hear his wife cooking dinner in the background. He was keenly interested in my IC symptoms etc. I finally respectfully told him that I didn't want to take up more of his time. I met him in his office just a few days later and I switched from my original urologist to him. I haven't looked back even though I have heard there are good practitioners or providers at the OU Medical Center too.

[sabstory]

I am in Oklahoma City. I am interested in support groups in this area.

[ICNPersistent]

I don't think there is an IC Support Group in Oklahoma City at this time. I contacted someone from the IC Support Group in Tulsa in 2008 when I was first diagnosed. She replied to a few of my emails and invited me to a meeting. I was unable to attend evening meetings in Tulsa and decided not to become part of that group. The Tulsa support group is also active with a nurse practitioner and a urologist who are both well known in the IC community. It is a great group if you can make their meetings etc. However, I must also admit that at the time I was first diagnosed, I was anxious about interacting with other IC patients. I wasn't sure what the future would hold for me etc.

While I'm not in remission from my symptoms I feel fortunate to be able to maintain a full time job. I am able to exercise within reason and do most of the things I did before I experienced my first flare in August 2008. I haven't experienced a full blown fare for about two years but I do experience mild symptoms most days and mild to moderate when I drink coffee or red wine etc. These are things I have been unable to give up for good.

Would you be interested in starting a support group in OKC? Perhaps, we could work together. I've thought about it but I haven't taken action. I'm definitely well enough to consider it. IC has changed my life in some ways but I would like to reassure individuals living with IC that there is hope.

[jennmadee]

I am in Boise City, OK. That is in the panhandle. :) Let me know if you are close...

[ICNPersistent]

You live quite a long distance from Oklahoma City so it won't work for us.

[sabstory]

I am really interested in an OKC group. If you think you have the energy to organize it, I would be there. This forum has been a life-saver. I was so frustrated when the doctor told me I had this condition that I had never even heard of. I had no idea what to even ask, or look for.

[brenda54]

I live south of OK,city and was diagnosed last week by Dr. Barbaara Voss Alvarez at the urology associates.She did the hydrodestion last week and told my husband that I have IC and to come back to see her in six weeks,then she'll start me on meds.I am not sure about her.I was already taking hydroxzine that my gyno put me on.Just feel like I have been left in the dark.:confused:

[sabstory]

6 weeks is a long time. I hate it when they put me off for 3 or 4 days. I would either find another doctor, or call and schedule an appointment sooner if you are having symptoms. For me, the pain is unbearable, I hate being put off by doctors. I think that they don't understand how life-altering this level of pain is, not to mention the frequency and searching for restrooms. I have found that I have to be very firm about what I want, and even then sometimes the doctors don't really want to do what I am asking for. Its been a miserable 6 months for me. I have seen 3 different urologists, and 6 other doctors. I think my next step is pain management. I haven't been to work in 3 weeks and I don't see myself going back anytime soon. Good luck. I can send you the names of the uros I have seen if you want to message me.

[ICNDonna]

Anywhere from three to six weeks is the usual length of time for a post-op check. If you're having problems, I think they expect that you will call and ask for an earlier time.

Donna

[ICNPersistent]

Dear Brenda,

When I was diagnosed with IC as a result of my symptoms and the bladder hydrodistension and cystoscopy, I was given a prescription for Elavil and Elmiron. I switched urologists almost immediately for many reasons and I've never looked back. I would be happy to talk to you offline about Dr. Parkhurst. I believe he practices as part of the same group and he is the proprietor for the Parkhurst Research Group which is actively involved in approved testing for meds for IC and prostatitis etc.

If you send me a message offline, I will give you my contact information and we can talk. I was diagnosed nearly three years ago after bladder hydrodistension etc. but as you may know, the results of that test are not definitive etc. unless you have Hunner's Ulcers etc. The quality of life questions regarding nocturia, # trips to the bathroom per day, symptoms etc. are just as important, if not more important, than the results of your hydrodistension. Having said that, there is a standard protocol of three drugs that many doctors do prescribe for treating IC but every case is different. Dr. Parkhurst added atarax to my regimen while I had been taking Elavil and Elmiron but I was unable to start taking Elmiron for about 3 or 4 weeks etc.

I live in OKC. Dr. Parkhurst's office is in Bethany. He works out of two locations and I have extremely high regard for him. He spent two hours on the phone discussing my symptoms etc. with me even before I had my first appointment with him. His wife was cooking dinner and his children were studying in the background. My regard for him doesn't mean that he would prescribe a different protocol but his people skills are just fantastic and his PA is awesome too. His parther is Dr. Bankhead and I don't know a lot about him. Dr. Parkhurst is innovative and progressive with his treatments. Instillations, etc. he's all about appropriate pain management and PT etc. comprehensive treatment to treat the whole person.

Send me a note offline and I'm happy to talk to you.

[MomRN&IC]

I'm in Checotah :) very close to Jen in Sallisaw! So great to see there's people around me going through this too! Glad I'm not alone! I wish none of us had to go through this though.

[brenda54]

I don't know if you got my message but you can email me at jimmyland1953@yahoo.com
Thanks Brenda

[brenda54]

Are any of you on the IC facebook page? I am on it and it is so helpful. Look for me on there.
Brenda

[MomRN&IC]

I'm on facebook. I agree, the ICN page is VERY helpful!

[soonerfan]

I WANT TO INFORM EVERYONE OF THE IC SUPPORT GROUP IN NEWCASTLE OKLAHOMA. IT IS JUST SOUTH OF OKLAHOMA CITY. WE MEET THE THIRD MONDAY OF EVERY MONTH AT 630-830PM. IF ANYONE IS INTERESTED PLEASE CONTACT ME AT 580-491-0455 OR lesley.rainey@hotmail.com. OUR GROUP IS GROWING AND WE ARE TRYING TO GET THE WORD OUT!

[soonerfan]

I want to second that Dr. Parkhurst is amazing. He is compassionate and very knowledgeable about IC. He has amazing staff and a wonderful PA.