Anyone seen Dr. Parsons?

[jvr]

Hello,
I also wanted to ask one more question. Anyone here seen Dr. Parsons in San Diego? I would love someone to PM and tell me of their experience. I was watching his conference video here on the website and his success rate seems pretty astounding to me. I think he said 90-95% of patients he can help.

Thanks,
Jill

[gabmora]

dr. parson was actually the doctor who diagnoised me with IC about 10 years ago. you will probably have to me patient in getting an appointment. but i had no complaints when he was my doctor. i was under his care for about 3 years, not any longer as i live in northern cal now. good luck.

[amaranthe]

I have never seen him, however I have heard of him and he is very well respected in the IC community. He is actually the Dr. who invented the rescue instillations.

The only bad thing I have heard about him is that he does NOT believe in pain meds for IC patients....EVER!!! Not only THAT, but when he speaks at conferences around the country, he also discourages OTHER Drs from prescrbing pain meds for their IC patients!

Personally, that would be a deal-breaker for me, since my primary issue is pain. I dont have freq or urg daily, but I DO have constant, daily, unremitting pain. I never had a break from it at all and was thinking some pretty grim thoughts (that I am not allowed to state here), until I found my pain Dr. Then, my pain Dr. put me on daily, round the clock pain meds and also gave me breakthru meds for my breakthru pain, and it was like the difference between daylight and dark! At last I could finally live again! Once I got on the pain meds, I could finally leave my bed for the first time in 4 years and could finally be a mother to my children, a wife to my husband, clean my house, cook for my family, have sex, go to church, go shopping and to the grocery, etc. The list goes on!!! You get the idea!

So, I guess what I am trying to tell you is this....if pain is not an issue and you dont need pain meds, then Dr. Parsons will be great for you! But, if pain IS an issue anad you DO need pain meds, then I would keep on looking. JMHO!

By the way, there is a TON of info about Dr. Parsons on the ICN. Just do a search on him and you will find pages and pages of it.

Hope this helps you!

Kind regards,
Amaranthe

[jvr]

Thanks ladies. I didn't know that he didn't believe in pain meds. That's interesting. I've never had frequency, pretty much only pain. If you listen to his lecture at the San Diego conference from a few years ago though, it's highly impressive. It sounds like he really believes in using Atarax and Elmirion as a conerstone therapy. He states that 75% of his patients will get better after a year on that combination. That's some pretty high stats. I'm confused though because I thought that Elmiron came up with some pretty disappointing results after further study...

Gabmora, do you mind if I ask how he went about treating you? I'm assuming he had you on the above meds? Were you satisfied with your treatment? I 'm tired of dealing with local doctors. I've seen 5 different urologists and only one was worth his weight in gold. That was Dr. Payne at Stanford. I'm mainly curious right now in looking for a doctor for my daughter. Dr. Payne doesn't see children so I don't want to mess around with multiple urologists like I have for myself in the past. I think that would be more tramatic for her anyway. Dr. Parsons sees children and he's cutting edge. I'm not sure if I need to worry about her or not, but a trip to the pediatric urologist at UCSF was a bit disappointing. Any more feedback would be greatly appreciated

Thanks again,
Jill

[nnj925]

I saw Dr. Parsons...hes good but never in... Im in San Diego...by Rancho Bernardo where are you?

Nicole

[Briza]

I saw Dr. Parsons...hes good but never in... Im in San Diego...by Rancho Bernardo where are you?

Nicole

That often seems to be the case with the in-demand, highly respected, well-known IC drs...unfortunate. And even so with the usual local uros...seems to be a shortage of uros in general (at least in my area) and waits for appts are MONTHS, and even when getting into that first (or second or third, etc) appt the office is overbooked, waiting room overflowing, and wait to be put in exam room HOURS and then often more HOURS before uro comes into exam room...this seriously has been regularly and consistently my experience with uros I have seen. I finally DID get into a uro my gyn referred me to and got a dx....but I have been able to return to my gyn for ALL of my IC and VV and PFD issues and treatment. Thankfullly he has stepped up to the plate for me and will work and learn with me along the way about how to best treat my symptoms and conditions, even if he is not an IC specialist. He is easy to work with, sees me as scheduled, is easy to get an appt with, and never more than a 15-30 minute wait, if any.

For many, Elmiron and Atarax are successful treatments, but you are correct, jvr, that 75% success rate with Elmiron does seem to be a bit high compared to the reported studies....and keep in mind that many have to discontinue Elmiron because of intolerable side effects.

Atarax not an option for me because I have bad side effects to antihistamines.

Pain, among other symptoms, is a big issue for me. Thankfully my gyn is willing to Rx a low end pain med, Tylenol w/ codeine, and it is very successful pain treatment for me, even much moreso than stronger narcotic pain meds I have tried, and without side effects. I take it sparingly and only as needed...but it is a mainstay of my treatment.

Anyway, that has been my experience Wishing you the best!

[jvr]

Hi,

Nicole, I live in northern California in Santa Rosa. Did you actually not usually see Dr. Parsons? Did you see his nurses instead? I was considering taking me daughter down to see him. That's great Briza that you have found a good doctor willing to treat you. If I remember correctly, aren't you one of the individuals having success with instills?

Jill

[nnj925]

jill...i DID see him..not just his nurse..origianally they gave me an appt for like 2 months out but told me to chart 3 days of peeing now just incase they get a cancellation and they did get one...so i actually went about 2 weeks after that initial call..he knows his stuff...hes like the one that teaches most other dr.s about this...but yea...I called tonight..and hes out for a few weeks..i had to leave a message for his nurse who will call me back on Wednesday.

[jvr]

Wow! I didn't expect a reply that fast If you don't mind me asking, how is your treatment going with him? I kind of gather that his cornerstones are Elmirion and Atarax and obviosly the rescue instillations? I just wondered what a first appointment would look like and how he approaches it from the beginning. Reading his lectures and watching his video casts are very encouraging. He definitely has confidence in his research and opinions. I feel hopeful about IC when I read or listen to him. I have so many questions I'd like to ask one of the big IC doctors and he would for sure fit that bill. Any further info would be greatly appreciated...

Thanks,
Jill

[Briza]

Hi,

Nicole, I live in northern California in Santa Rosa. Did you actually not usually see Dr. Parsons? Did you see his nurses instead? I was considering taking me daughter down to see him. That's great Briza that you have found a good doctor willing to treat you. If I remember correctly, aren't you one of the individuals having success with instills?

Jill

Hi Jill
No I have not done rescue instills but have discussed them as a possible treatment with my gyn, if necessary. Tho he has not done them before, he is willing to learn and teach me how to do them when/if it were to come to that and I have provided him with as many dr contacts and my own research info on how to do them if I ever choose to go that route.

But my symptoms now are very much under control with diet, self help stuff, and minimum of meds so for now I am not considerng instills. But yeah, I am so grateful that he has been so willing to work with me over the past years, and actually from his working with me I can see that he is much more educated on IC and possible treatment options and that he is now diagnosing AND treating more IC patients than he was in the past when I was probably his first IC patient who needed/demanded lol not only diaignosis, but also treatment after diagnosis. I think this is great because gyns are the dr most women turn to first when having any issues "down there." And I saw MANY gyns who dismissed all of my symptoms as being in my head, see a shrink, til finally I was blessed when my GP's NP referred me to her gyn (my current gyn) and from that point on I was on my way to feeling better! So I am a big proponent of gyns being educated and involved in IC dx and treatment!

WIshing you the best! Luv, B

At least for me, this gyn has been most helpful for all of my conditions, especially considering that my IC/VV/PFD symptoms are so intertwined and feed upon eachother and often uros are not equipped or interested in dealing with both the uro AND gyn issues that many patients such as I have!

[nnj925]

jill...i was taken in no wait...he sat w/ his nurse at his side...and asked me some questions..like how did i find out i had IC...and when i told him 2 urologists just kept giving me antibiotics and 2 GYN. didnt know (after me telling them i was having pain during sex)....i went on line and researched myself...i found him and his website , took his test and scored really high...he was chuckling that its a SHAME these neurologists are not diagnosing this...they see a patient like me w/ UTI symptons and no infection for 5 months and dont know what it is... anyway the visit was fast...he said I was an "a" typical case...open and shut...perscribed elmiron said i caught it early and my bladder could be healed he said i may feel relief with the elmiron within 2 weeks and if so after the 1 bottle of pills is done i probably wont need anymore...im on day 1...i had spazams about an hour after i took it ..then they went away..now I have some wierd like sinus pressure or between the eyes...but other than that..ok...

[jvr]

Wow Bri, your doctor sounds impressive. He sounds like a keeper

Nicole,
I didn't know that it was possible for Elmirion to work that fast. I'm being super nosy here, so don't feel pressured to answer any more of my questions. If you don't mind, I was just wondering how long he wants you to wait until your next follow up? I'm seriously thinking about driving down to see him for my daugher, so I'm just wondering how he operates everything. Did you say that he only wants you to take this 1 bottle of Elmirion and thats it if it works in the next two weeks? Do you mean use nothing along with Elmirion if it's working or??? I'm confused. I hope he uses and offers other meds besides just Elmiron, Atarax and instillations.

Thanks,
Jill

[AthenasMommy]

I'm scheduled to see Dr. Parsons on May 26, so I will let you know how it goes! I have been on Elmiron for 3.5 months with no improvement, so I guess everyone is different. I am hoping he offers me the instillations. I have heard such great things about them. Anyone care to comment (if you've gotten them at Parson's office?)

Thanks!

AthenasMommy

[gabmora]

well, when i saw dr. parson about 10 years ago the choices were elmiron and he did mention instillations, but i never did it. not severe enough of a case. i was very happy under his care. at the time he and his office staff were very professional easy to speak with. while appointments were harder to schedule because of his busy schedule, there is a reason for it.

[jvr]

Thanks for replying Gabmora Athena's Mommy, I'll be eager to hear about your appointment. If you don't mind, please keep me posted

Thanks ladies,
Jill