Who are the BEST doctors treating IC patients???

[icnmgrjill]

One of the things that really bug me about national conferences is that we rarely see physicians acknowledged for their outstanding clinical care of patients. It's all about the researchers! But, we also need to acknowledge and reward those physicians that take the time to really care for their patients.... from educating them about IC, to teaching them about treatments and being a lifeline during flares. And, maybe it's not a doctor, maybe it's a nurse in a urology clinic who plays that essential role. In any case, part of our 2006 IC Awareness campaign will be a months long period where patients can nominate their favorite physicians who will then receive recognition from us all!

But, to do this, I need a team of patients who will help create the nomination form, seek a few sponsors, evaluate the applications and select our winners. Anyone interested??? I also need a team leader to do this! Any volunteers??

Wouldn't it be great to give the best IC medical care provider a holiday in Hawaii??? We might be able to do it with your help!

Jill :)

[Babs RN]

What an amazing idea!!!When do you plan on doing this? My current uro is wonderful. Would you like me to find a team leader for you? I wouldn't mind heading up the selection team myself.

Hugs,
Barb :grouphug:

[dancemomof2]

I will help BAbs in anyway I can. Just tell me what you need help with.

[Rose Fish]

Hi Jill. - I think by far the best IC doctor is Parsons. I am from Canada and I set up a telephone conference with him. His nurse, Maryanne, is the nicest human being anyone can imagine. She went upon and beyond to try and help me out. By far they have the greatest office!!!

Take care, Doreen

[IC SARAH-CPP]

I would love to help. I have an amazing doctor right now. She is an ob/gyn but she is MUCH better than ANY uro I have ever seen. I love her more than my own family,lol!! Just kidding, but you know what i mean. I also would have to agree about Dr. Parsons. He was so nice to me. I emailed him and he emailed back right away, several times! I was impressed that a doctor that busy would take the time out to email me and try to help me, even though he wasn't making money on me!!
Anyway, Please consider me to help. I would love to and I am a good little worker!
Love Sarah

[callie0767]

i would help too. my favorite doctor is a local doctor who is now deceased but he was my lifesaver. he listened when others would not. i count myself as lucky because i was diagnosed with only my second doctor. the first doctor told me it was all in my head and i needed to see a psychologist. but dr veach believed me right away and diagnosed me quickly. i have another urologist now but i don't like him as well as dr veach. he was kind,caring and compassionate to me so i immediately felt comfortable with him. of course he doesn't measure up to dr parsons or the other big name docs but he does in my book. my new doctor is great don't get me wrong but he doesn't measure up to dr veach.

[patricia1]

I also would not mind helping in anyway possible. I love my now Uro. He saved me from my Interstim problems and was there for me when know one else would touch me. And although I still have problems he has never dismissed me once.

[Cheries]

Please count me in to help. I have been through many physicians in the past 10 years! I don't have anyone to nominate right now, but I would love to be on the selection team or help find sponsors. I think it is a fantastic idea and one that will give someone professional recognition for their work. What a better way to motivate and help doctors stay interested in this disease which is so life-altering? It would be great to get news coverage for this also.

[ihurttoo]

I would love to nominate my wonderful doctor in Bowling Green, Ky. His name is Dr. Joseph Gass. He is an Ob/Gyn. He's not famous like the other ones mentioned here. But he is quite special. I would put him toe to toe with anybody. He is a knowledgable, caring, and compassionate doctor, which we all know is quite a rare combo. I have seen many doctors over the years in my IC journey, and like many, I too was told my problem was psychlogical. But kuddos to Dr. Gass for beliveing me, testing me, and doing his very best to treat me. He has gone above and beyond on many occasions. He is open minded and reads every new thing I e-mail to him and is williing to try new things even if he personally doesn't think they'll work. He's still willing to give it a shot. He is in his 40's. That's the age the perfect age for a dr, in my opinion because he is old enough to have some experiance, but young enough that he is still up on modern techniques. And best of all he is hasn't been jaded to the point of no compassion as so many are. He is in my prayers every night, the first one I list after my family. I ask God to keep him safe, because if something ever happened to him, I don't know what I'd do. His staff are also very good. It's a trickle down effect. You know how you go somewhere and the receptionist is hateful and then the nurse and you just know the doctor is going to be the same way? Well it also works in the reverse, at least it does in his office. Everyone is kind...right down the line. He may not have all the answers, but then who does? But he is working hard to figure it all out, and for that alone, he would get my vote.

[K9wife]

I would be happy to poll my folks in our Support Group, or any area within NY state if you'd like- just let me know the particulars.

[Babs RN]

:grouphug: Ihurttoo,
Was Dr. Gass in the Army at one time? I believe I saw him when I was in my early twenties and a nurse in the Army in California. If it is the same doc, I remember him as one of the best GYN's I have ever seen. You can PM me if you would like or post here.

Hugs,
Barb :grouphug:

[IcyAngel23]

Dr. Parsons and his nurse Maryanne are by far the est I"ve seen. I agree with the other comments about him too. "Ive seen my share of drs. too. Count me in too.

[tigger_gal]

what a wonderful idea.. I would love to help, but right now, I have alot going on and don't think it would be fair to offer to help if something happens and I am not able to do my share..
I would like to say that my uro, Dr Kenneth Peters. is Dr. God.. I love him to pieces. He is the greatest.

[gypsyjoy]

Dr. Christopher Payne Stanford Urology Clinic and his OUTSTANDING staff of nurses and his PA Michelle! Also my PA-C that I can on long go to Christine Elder PA-C without these people I would not be writing this I would have taken my life. They and my Dr. Peters (shink bless his heart) saved my life. There is NO one person it was a team of wonderful medical professionals that were there for me when I needed them most!

[ihurttoo]

:grouphug: Ihurttoo,
Was Dr. Gass in the Army at one time? I believe I saw him when I was in my early twenties and a nurse in the Army in California. If it is the same doc, I remember him as one of the best GYN's I have ever seen. You can PM me if you would like or post here.

Hugs,
Barb :grouphug:
Yes, he was. I don't know if he ever worked in California, but I know he was stationed in Hawaii and studied at the University of Tennessee, but with the way they move Army people around, it is quite possible, I'll have to ask him when I see him this week. I am curious, though. It is indeed a small world.

[dancemomof2]

OK I give my bladder life to Dr Stanley Zaslau at WV University Hospital.

[Babs RN]

Amy,
He left CA for Hawaii, so I think he is the same doctor. He was phenomenal which is hard to find at times with military docs. I will be interested to be absolutely sure when you see him. Another one of my OB's practices in Bowling Green after leaving the Army--Dr. Allan Walker. Very good also. I lived in Clarksville, TN for four years so I know the area pretty well.

Hugs,
Barb :grouphug:

[ihurttoo]

Oh my gosh!! Dr. Walker practiced with Dr. Gass at Graves Gilbert Clinic while I was pregnant 5 years ago!! I saw him some too while I was pregnant! I loved him too! This is amazing! You've gotta PM me with your real name. I'll be seeing him tomorrow and I want to see if he remembers you. I just can't get over this!! The only thing I've ever seen like this is when my brother who also lives in Ky was stationed in Germany and ran into someone he knew from high school while he was in Germany. This is SO weird!!!! I can't wait to tell him tomorrow.

[kelly McC]

I would love to help.
Let me know
Kelly

[Dixiefireball]

Oh what a great idea. I'm sorry I missed it when it first came out i was taking a break from the boards since I've been doing so well. (knock on wood.)

I have the lead IC sp. Dr in South Carolina Dr. William Kerfoot. this man has saved my life countless of times. He also has a wonderful staff. there is three great RN's I love like there where family there names are Jerri, Doris, Rose. there is RN's in with him plus more Dr's but none goes out of the way like he does. You better believe if you ever get an appt with this wonderful man you will have a wait to see him the reason is. Is because he cares enough to sit down with each patients no matter how busy he is and listens. he will go out of his way to help you in any way he can health wise and if he can't find a way to help you he is willing to work with a team of Dr's to find you the help you need, but when it comes to IC he knows his stuff. if it takes an hour with a patient then so be it he will do it. he even talks to you in English not Dr slang so that you understand the treatment plan etc. when it comes to surgery he explains everything step by step. I swear I love this man to dealth. He lets God help guide him alone while treating each patient I honestly believe. I could never say enough great things about this wonderful Uro. he was the one who dx me back in 2000. he was the first uro i seen since i was a child.
and one major thing is he stays up to date on all treatment plans he even has money and time tied up in research for IC patients.
he understand our suffering and pain.

If there is anyway I could help in your new project I'm ready and willing to try.

Rhonda

[icsonja]

Jill, I would love to help out, I am in Texas and have seen Dr's across the state, some awful some great. I think I know now what makes which one which, if you know what I mean?
Also you mentioned nurses and PA's. I know of a caring wonderful Nurse Practioneer who specializes in URO, and has her own clinic treating IC and PFD and sexual troubles as well, She is Micki Autry in San Antonio and she saved me. She is hard to get an appiontment with these days, but she spent 4 hours with me on one visit, and never has made me feel as is I have any dumb questions, and she will never "give up" on youu as so many DR.s will when "normal" treatments don't work.
Can there be a different place for Doctors and then a another for "other" profesionals who help us out on the form?
Sonja

[Kara29]

My favorite and only urologist and surgeron is Dr. Emanuel Friedman. He starts out at ground zero and tries everything he can for his patients. He even lets his patientes suggest meds to try. He and I worked hard for 3 years to find a medication and or procedure that would help me but I just could not take it anymore. He has been my doctor for 6 years and I would never leave him He has saved my life. I have been to 14 Urologists (IC Specialists, no boubt) but none of them would take me on as a patient, so I have given up. In 3 and 1/2 years, we have come up with no one. So we hop into the car and drive from Central NY to Boston (6 and 1/2 hour away) in the snow and rain, to see Dr. Friedman. I have even seen him for surgery the next day in many cases. I never need to make an appointment. He just tells me to show up when we get there and he takes care of all of my needs. He knows that he's the only one who will take care of me and he takes this very serioulsy. We talk on the phone any time I have a questions or concerns. He has his secretary interrupt him in an exam to come and talk to me over the phone and if he's in between surgeries, he will give me a quick call if it's an emergency, which often times it is. I don't bother him unless I am really in pain or having a serious emergency, so he knows when I call, that it's really important and he doesn't leave me hanging. I know some of his other paitents will attest to this. He's by far the best surgcial urologist on the east coast as far as I am concerned and I reaseached many doctors even while I was still seeing him just to get 2nd, 3rd, 4th, and 5th opions but I still chose Dr. Friedman in the end. If I ever had to have surgery of any kind, he would be the one I would choose not matter where I live.

Thanks Dr. Friedman for all you do for us!

Kara Lynn Reese :angel:

[Baba Yaga]

Um... err... is there by any chance an underground "must to avoid" list? I'd like to get my hands on something like that, expecially regarding the greater NYC area.

Just thinkin aloud here...

[ihurttoo]

Um... err... is there by any chance an underground "must to avoid" list? I'd like to get my hands on something like that, expecially regarding the greater NYC area.

Just thinkin aloud here...
They probobly havent created one of those because all the computer activity on a site like that would probobly cause the systems to crash from the overload!

[Ginny]

What a great idea about a "must avoid" list. I have two that did serious damage and I would love to stop people from going through what I went through.

Ginny

[DENISE31]

I Think That Is A Great Idea! I Will Do All I Can To Help. I Know That Dr. Alex Childs In Birmingham Al. Has Saved Me. He Sits Down And Talks To All His Patients And He Really Cares. On My First Visit He Told Me That God Put Him In This Business To Help Heal People Not To Just Take Their Money And Not Give A Care About Their Patients. That Also Ment Alot To Me. Everytime I See Him He Makes Me Feel Like I Am The Only Patient That He Has Because He Shows That He Cares So Much. He Has Hundreds If Not More Patients. He Wants To Know Everything About His Patients And To Me That Is Great!!! I Love Dr. Alex Childs To Death. He Is #1 Doctor In My Book.

Denise

[Baba Yaga]

They probobly havent created one of those because all the computer activity on a site like that would probobly cause the systems to crash from the overload!
:lmao: :lmao: :lmao:

I guess the only way to do it is for people to request PMs for their own specific region. No way this or any site could acknowldge an official one (even underground).

Anyway, if anyone has tips regarding NYC, please pm me!

Like:

Hey Baba Yaga,

[itzbezzy]

:lmao: :lmao: :lmao:


**** in Queens. He is a MUST to avoid!


...i totally read that as '****' and laughed aloud. :biglaugh:

[Baba Yaga]

That was the spelling in the old country, before it got changed at Ellis Island. ;)

[DebbieD]

Dr. George Webster at Duke University
Dr, David Alabla at Duke Universaity
Dr. Bryan Shumaker at St. Joes in Clarkston, MI
Dr. Krri at St. Joes in Clarkston, MI



DebbieD

[ICNDonna]

There's a reason for not allowing negative comments about specific individuals on these boards. The potential for legal liability is tremendous.

Donna

[Baba Yaga]

Donna, my example was a hypothetical made up name, because I would never publicly post a remark like that about a real professional -- and also nobody asked me for my list anyway. There is no M******* P********** in Queens, NY, that I know of. (The Ellis Island comment was a joke too.)

I'm sorry I opened up this can of worms. And I'm sorry I've been giving you extra work here! I guess I'm still getting to know the boundaries, and will be for a long while.

[curlycue]

Dr.Parson and his staff.

[mallenajolie]

dr. ken peters helped more than any other uro, and I have told him.

[Katherine]

Donald Mcknight he is from Jackson tn
I just love him.
Katherine

[littlemyrn]

Jill, just saw a new URO and would love to recommend her. Her name is Marcy Abel at Urology Associates, P.C. here in Nashville, TN. The thing that impressed me the most is that one she took an hour to talk with me and two when speaking of the pain that IC patients are forced to live with she started to cry. She was so compassionate and I believe she has me on the right track. I was dx Sept. 2004, but looking back I believe I have had this for about 18 years. I will do whatever is needed to help. Thanks for all YOU DO!

[snowgirl]

Hello,

I am blessed to be a patient of Dr. McGuire at U of Michigan. He is world renown for his work in female urology. He does all that he kind to help me. Very empathetic. I have severe IC with low yes low bladder capacity. I also have a great GYN at U of Michigan Dr John Randolph. He is a very kind man and also very empathetic.

I have heard of this Dr. Peters mentioned on this board in Beoumont Hospital outside of Detroit MI. I know his pts like him very much as I hear.

[Trac348]

I just wanted to say that Dr. Roach in Atlanta has been helping IC patients for 25 years. She really knows her stuff. I am glad I found her.
Tracie

[Sarojini]

I'd like to nominate a few individuals.

The first is Dr. Ragi Wiygul, formerly of UT-Memphis Medical Group and now of University Urology in Knoxville. She helped me so much with everything from IC to fibro while I lived in Memphis, and she's a wonderful person and friend. I plan to still visit her when we visit my MIL in Knoxville occasionally.

The second is Dr. Robert Evans, in Greensboro, NC. When we moved, no doctors would touch me because I was on a long term pain regimen, and I ended up in the ER with severe withdrawal symptoms. Dr. Evans took over from there and I haven't needed a thing since -- he helps me out a lot (he even suggested the least bumpy, trafficky roads for us to take on our trip up North this Christmas... LOL :lmao: )

[cathy2005]

Hi, I was needing some more information on the Dr in Bowling Green. I live pretty close and would love to get a second opionon, thanks

[ihurttoo]

Hi, I was needing some more information on the Dr in Bowling Green. I live pretty close and would love to get a second opionon, thanks
Hi! I'm Amy. I just sent you a PM with the information.

[Kiernan]

I live in Mass., Have a urologist, but am not satisfied with him. Recently diagnosed last September 05. Its the spasms, pain, that really affect me. He gave me codein. When I called regarding a excruciating flare up,(had to miss work), he seemed annoyed with me. I am taking Elmiron, ditropan, and codein for pain. If I exercise- I have a bad flare up. Sex also causes a flare up. I am getting so discouraged about it. I feel akward talking to him about this. Anyone know of a doc in the Boston area, or online I could contact? I am 49, in good health otherwise. Any info would be appreciated.

[Jean12]

My lifesaver has been a nurse practitioner Maryanne O'Toole. Unfortunately she is leaving the office and I'm heartbroken. I have been told that Dr. Sans in the Boston area is supposed to be one of the regional guru's for those of us in Mass., you may want to try locating him.

[Baba Yaga]

Where is Maryanne O'Toole going?

[Jean12]

She will be practicing with a local general practice group. I'll miss her terribly. She was the first person who seemed to REALLY comprehend what I have been going through and has been so supportive. At least she has been able to get me going down the right path.

[Kiernan]

Jean

If you dont mind me asking- what meds are you on, and how is your condition now? Do you follow the IC diet exclusively? Any tips that have worked for you? Thanks for responding.

[Kiernan]

LittleMYRN
What do you take for pain? I am seeing my uro tomorrow. Should I ask him for something during break through pain? I have codein for pain, but the spasms, and pain at other times is excruciating? I also think I need an antispasmotic. He is hard to talk to. Thanks to everyone on this board.

[Jean12]

Kiernan, I am taking Elmiron, Neurontin, Cymbalta, Detrol LA, Hydroxyzine and my thyroid medication (Armour Thyroid) on a daily basis. I have on hand for severe breakthroughs Vicodin, Tylenol #3, and Percocet.

I am much better than I was before getting on board with all the medications and it has taken some time to find the right combinations and dosages. I still have difficulty with pressure, frequency and urgency when I drink the amount of liquids I should. I have pain with movement, so if I am on my feet and moving around for any length of time I have to deal with pain. I don't like narcotics so I am doing my best not to take them. I play a balancing game daily on whether to drink and pee all the time or allow myself to dehydrate and deal with the consequences from that. My doctor just filled out the RMV form so that I can get a handicapped plaquard to use when I'm feeling worse than usual.

I have not had success with hydroditensions or instillations of various combinations including DMSO and Elmiron along with the steroids, sodium bicarb and other common drugs used for instillations. The doctor that does the hydrodistensions has written a letter to my insurance company explaining that I have failed to respond positively to every treatment available thus far and asked for approval to try botox. It's a long shot, but nothing ventured, nothing gained.

My insurance company had approved me for a TENS unit and trial in November and in January when I returned to the pain clinic they told me that the insurance company was no longer covering it. I guess I'm going to have to call and see what that is about. I was hoping that a trial with the TENS unit through the pain clinic would give me an indication whether or not an interstim might be useful. The TENS unit that they use is a twelve lead unit, something I have not heard of before. The doctor explained that the reason pain is so difficult to treat long term is because the nerve paths keep looking for a way around whatever is being used to short circut the pain. Eventually the pain impulses win and create a new pain path. At least that explains why some things seem to work well for a while and then all of a sudden they no longer seem to be as useful as they once were.

As far as the diet goes I have found that some things that are highly acidic cause more pain. Things like orange juice, tomatoes, stuff like that. From what I can establish the diet doesn't seem to be a huge factor for me unless I way over due it with acidic foods. There are times when I can eat anything I want and have no reaction. Then there are times when I watch the diet very carefully and still end up with huge flares. My guess is that for me it takes a combination of factors to create a huge flare.

Next week I am going to go and have some type of lidocaine block and see how that works. I am getting mixed messages about whether the Interstim is used for pain and urgency/frequency/pressure or just for the urgency/frequency/pressure. The pain clinic dr. told me that the botox does not have good results with pain and I'm seeing on this sight that the interstim is not for pain either, so I'm rather confused and want Maryanne back to run all of this by. She was excellent at researching and helping me fine tune what was best for me.

I know much of this sounds very discouraging, but let me assure you that I am in a much better place than I was a year ago. Most people do not get to the point I am at. More people are responsive to some medication rituals than are not. My guess is because I have had this disease since chilhood and was undetected/untreated for years that my bladder received a lot of damage that may be difficult or impossible at this point in medical science to aleviate my condition fully. I am grateful for the response I have had so far. I'm in a better place than I was a year ago and that is a good thing. Although it is difficult, I am working two jobs. I happen to have two very good employers that give me a lot of flexiblity and are very supportive and understanding.

If I am flaring I start out by using a mild pain killer such as motrin. I use a warm hot water bottle or rice bag on the perineal area. I make sure that during a flare I watch the diet and consume food and beverages that I know don't add to my pain. I give myself quiet time if I can. If that doesn't work I move on to more powerful pain killers and continue with the heat (or cold for some people). Water keeps the urine more dilute so I try to drink even though it mean as many as 60-70 trips to the bathroom. I make sure I take the pyridium and call my uro's office. It is important to make sure that there is no infection. Sometimes I just curl up in bed and cry. This is when I take a medication that will knock me out while I ride the wave.

Jean

[littlemyrn]

hey, my new uro gave me valium 5 mg. tablets for spasms. She told me to break them in half. I have been taking one every morning and that gets me through until around 4:00 p.m. I go back next week and I am going to ask if I can take the other half then. My pain really never stops. Just at times I can't stand it I take a Lortab and that helps. Good Luck.