Poll: Interstim vets? Would you pick the same doc?

[icnmgrjill]

Again, for our Interstim veterans, how did you find a doctor to talk with about this?? Would you do anything differently? What do you think is the most important in your physician?? Any regrets?

(Please don't name a doctor if you were unhappy with the experience.. let's look at generalities instead).

[DebbieB]

Well I was just at the end of my rope !!
I was so ill , done all kinds of medication , Elmiron to name a few , did the DMSO & Heparin instillation ,14 cystoscopic and 2 hydrodistention...
Biofeedback, two Urodynamoics ...
I went to one Urologist and was sent to another until I found the right one,I would say get more then one opinion ,like I did..
I asked alot about this Urology and all kinds of questions..
I would say the most important thing is how long your Urologist has done this procedure and his knowledge on the procedure..
I read all I could on the InterStim and just ask lots of questions when I went and saw him and ask him questions about the procedure..
I went on the Internet and was so happy to find this wonderful web site, believe me is has changed my life , all the friends and bionic sister's and my bionic twin , I have meet on this wonderful site and Jill and Donna , Diane and Lisa to name a few and all my IC sisters...
I have learnt lots off this web site and got to post to other girls that had done the InterStim too..
NO REGRETS...at all I have my life back now, I am able to work now and to tell you the truth about two years I was in the most awful state of mind
I am just so happy that I did do the InterStim..
***One thing to remember please educate your self in reading and getting all the literature you possible can on the InterStim Implant procedure ***

~~~Hugs~~~ Debbie

[This message has been edited by DebbieB (edited 02-15-2001).]

[Ruth N]

For the most part I just got lucky. After a miserable experience with one urologist a friend put me in touch with a friend of hers who also had IC and loved her doctor. I then switched to that doctor,a urogynecologist. At that time I had never even heard of the interstim. This doctor was so different, not only in compassion and bedside manner but also in his knowledge base and approach.His exam seemed really wierd at the time because he was also asking me to do things like spread my toes-which I couldn't. Well, we now know that the sacral nerve is somehow connected with the toes as well -as also evidenced by people feeling stim in their toes, by the SANS approach etc. It all made sense on the one hand, but was confusing on the other since I went in expecting something very different. Hubby happens to be a neurologist and was skeptical until he did his own neuro exam on me and found real deficits in my sacral nerves functioning. He then talked to the urogyn by phone in much more technical ways and got off the phone also thinking it all made sense. Hubby also has seen much success using a similar type of stimulator,implanted near a different nerve to treat seizures that have not responded to more traditional treatments.

I was ready to sign up but my doctor refused to do the interstim until I had also done the electric stim/biofeedback-the only thing I hadn't yet tried and failed-in keeping with the protocols for interstim use. He believed in trying the traditional IC treatments first (which I already had).

My doctor was great and I would absolutely not switch. He also is willing to talk to patients on the phone and is not at all threatened by informed patients. In fact when I told him about this site and message board he asked me to keep him abreast.

I was one of his first implants and he used the info I got here from others who already had the implant in counseling other patients in what to expect after surgery re recovery time etc- saying-"they know better than I do since they were on the receiving end.

Gosh, this has gotten long. Sorry if I am rambling.Talk to other patients, talk to several doctors and most of all trust your own gut.

[rhonda]

No regrets here! I mean it's not 'the cure all' and I still have days where I have to self cath and I still have days of increased frequency but life is actually livable for the first time in over 4 years. I went through just about everything. DMSO, elmiron, double strength elmiron, heprin, dmso cocktails with heprin, over 20 hydrodistentions, antispasmtics, antibotics, antiinflamitory and 2 pain clinics with no luck all in 5 years. My uro , who NEVER considers taking the bladder out, was talking to me about having this done due to the severity of my IC. I brought up the interstim and he didn't know anything about it so I found another uro who did. He did all the calling around to find one of the best doctors for this in the nation. We traveled 1500 miles 2 seperate times (once by car for the trial and by plane for the surgery) from South Mississippi all the way to Indianapolis, IN to see Dr. Tom Benson. He and his nurse have been wonderful. He is a great doctor and even when I have questions now they are right ready to try to help me out so I don't have to come all the way back up there.

[Melanie]

My uro is Dr Payne at Stanford. He is the one who first diagnosed me with IC. I've been through all of my IC treatments with him. He is very knowledgable and very compassionate. I am very grateful to have him as my Dr. He didn't suggest Interstim until after I had been through everything else.
I originally found him after almost a year of searching for a urologist who could help me. It wasn't an easy process, but well worth the effort and hard work.
take care,
Melanie

[Teri]

I ended up with my uro as a last chance effort. No one local seemed to beable to help me. He seemed cold and so uninterested in me as a person. So, I faxed him a letter telling him about myself and what IC had done and taken from my life. Grabbed him by his coat after an appt and MADE him sit in a chair and talk to me, not at me.....and we have the most wonderful relationship now.

I can't imaging me letting any dr but him doing my interstim surgery. This man TRULY cares about IC and won't quit until there is a cure or a treatment that helps all.

Because of insurance issues I may have to stop seeing him and it's so upsetting to me....I owe him so very very much. It's almost like the feeling you have toward your OB/GYN right after he delivers your baby.

hugs teri

[Sandy]

Yes I would do it again. Went through 5 uro's one telling me no IC one telling me yes IC. DMSO treatments, never again. The uro that was doing this said to try and hold it three hrs???!!! I am glad we took the truck and camper to the hospital when I had these done. Needed the toilet constantly on the drive home.Cystos hydros, and toooo many drugs to remember it feels like. The only anti spasmodic that worked for me was Opium Belladonna suppositories.(old one, but worked well)
I cannot remember how I came across this board(I think just surfing one night)but read some posts and got the name of the uro I am presently seeing now. The procedure was done 7 months ago and just now it seems like it is falling together, so it takes TIME, and for me I thought it was never going to work, but things are improving. =)I still have to cath at times and still get flares and still have to go in for "tune ups" Some people I quess take longer than others to get this regulated well, but, yes, I would do it again. At least this winter I saw outside.
Sandy

[tigger_gal]

Again, for our Interstim veterans, how did you find a doctor to talk with about this??
I had a bad experience with my first uro, I left him and went to my mom's.. I love him he is god... so I thank my mom for suggesting him to me. He is one of the top 10 uros/IC specialist in the united States.

Would you do anything differently?
I would have seen my moms uro first before I seen the other uro

What do you think is the most important in your physician??
he is caring, he listens, he answers all your questions, he leaves you with no doubts on anything. His bedside manner is wonderful. He is an IC specisalist that keeps up daily on IC and interstim updates.

Any regrets?
NO never, I have had great sucess and would do the interstim again over and over.

(Please don't name a doctor if you were unhappy with the experience.. let's look at generalities instead).

My Dr is Dr Peters, top 10 in IC Specialist in the US.

Brat

[patricia1]

Again, for our Interstim veterans, how did you find a doctor to talk with about this??
My orginal uro who diagnosed me sent me to see another phy in his office experienced with IC and the Interstim. I had tried all meds and treatments and nothing worked.
Would you do anything differently?
I would have thought twice about getting the stim. It gave me great relief for about 6 months but the last 3 yrs have been really bad.
What do you think is the most important in your physician??
I am going to answer this question in respect to any phy someone is seeing about an interstim, as I no longer see the dr who did mine. Make sure the dr is very experienced in the Interstim surgery both before and after surgery. Make sure that if you have problems 3 yrs later will he still help you. Make sure if you lose your health insurance that the dr who did the surgery will still help you if you have problems or need readjustments. Make sure the phy stays update on anything that is need with the interstim ie problems people have so that they are able to reconized problems sooner.Any regrets?
Yes having the problems I have had, and not being happy with my revision, and what happened bc I lost my insurance and the problems trying to find another dr who would help me. I dont think I would do this again. To me you must be very careful as to falls, car wrecks so forth as they can do great damage to you.
(Please don't name a doctor if you were unhappy with the experience.. let's look at generalities instead).
Personnally I would NOT recommend the dr who did my surgery. For the fact that when I starting experiencing problems with mine he did nothing for me. Told me my problems were normal and then he starting not even returning my phone calls. I know I lost my health insurance, but this man put this in and he should have standed behind his work and he did not. I also was not impressed with his behavior during this time and I lost respect for him. I felt he was after the money he got from the stim than my actual health or condition....

[dancemomof2]

Again, for our Interstim veterans, how did you find a doctor to talk with about this??
My Uro put this decision i nmy hands, he was my orignal uro, and told me when I was ready for one that i would be the one to tell him.

Would you do anything differently?
No had i done it sooner then i would have had to deal with it through a suprise pregnancy.

What do you think is the most important in your physician??
That he is available to me day and night with any petty question I ask or problem I need, his door is NEVER closed to me.

(Please don't name a doctor if you were unhappy with the experience.. let's look at generalities instead).

My uro is Dr Stanley Zaslau, one of the top Interstim implanters in the US right now, I would travel across the counrty for every appointment if he were to move.

[DebbieB]

Again, for our Interstim veterans, how did you find a doctor to talk with about this??

I found this doctor after seeing my Uro for over 12 years that said he could not do anymore for me so he send me to another Uro and he could not help me and said he knew some one that could help me and by luck he was the one that knew how to help and he sure did it at that !!!
I think it is a good idea to have more then one opinion when looking for any kind of doctor...

Would you do anything differently?

I would not do any different at all I just wish I went to this doctor ten year earlier....


What do you think is the most important in your physician??

He knows what he is doing in the InterStim field and has lots of experiences in doing this procedure..and a good listener and there for you anytime you need them like mind Uro is ..

Any regrets?

NO REGRETS..., hey I would do it all over in a minute if I had to again

(Please don't name a doctor if you were unhappy with the experience.. let's look at generalities instead).

My doctor is Dr.M. Hassouna he is one of the top one in Canada and he had taught all over the world...he is the best in my books...

This is an update from four years ago ...

Debbie

[XoChelsey03Xo]

I got the Interstim because I didn't want to be taking 90 pills a week. I am only 20 years old and there is no clue what these 90 pills are doing to my organs. I had my implant done my Dr. Bearrs in Orange Park, Fl. He is a very good doctor and I like him a lot.

Chelsey