Qwestion about a Doctor?

[funinsun18]

I went to see Dr.Steven Siegel on Tuesday.He wants me to get a Interstim.At the end of our visit I told him that I expected to maybe get my meds changed or a different cocktail for instills.He said he didn't believe in any of that just the Interstim.I feel like he maybe trying to sell me this or maybe he is an expert on it and just knows by reading my medical records.I asked him how many patient he's has done this with and said 300 before the new clinic and thousands afterwords.When I left there I was really thinking this is my savior.Now I'm not sure.I've been reading lots of posts and researched on other sites.My biggest complaint with IC is pain.My question is has anyone else seen Dr. Steven Siegel?He was on a lecture here before in 1999.
Any thoughts or comments much welcomed.I just don't know if I should do this or not.
Thank you

Hugs
Machele

[ICNDonna]

Even those who consider the interstim to be a total success agree that it a last resort after other treatments have failed. My suggestion would be to get a second opinion.

Donna

[humpieumpumkin]

My new uro "doesn't like pills". He is doing the stim on me. I did every treatment except DSMO and that cytosporek(sp) including PT, diet modification and bladder training. All these were taken into consideration before the implant was decided upon.

Erika

[ihurttoo]

I gotta agree with Donna, that from what I have heard from others here and read from what the experts say, it is only something to be considered after trying more conservative approaches, such as meds, bladder treatments, therapies, etc. Also, since your primary symptom is pain, I hope your Dr. has told you that even Medtronics (the company that makes the Intestim), says that it is not for pain. A few lucky patients have had that bonus side effect, but they are in a minority.

I definatly think you should get a 2nd opinion. Most any Dr. worth his salt would value a 2nd opinion. Hopefully, yours will too!

[jen74]

Also, from what I was told, the interstim is good for a person who has alot of frequency, but was told it is not something to go into if your looking for pain relief. Now, I do have a friend who has the interstim who says it has helped with her pain some. So maybe when it helps the frequency, then that cuts down some of the pain. I have a major issue with severe pain. I do get frequency also, but more pain!
Jen

[tigger_gal]

sweety, put your shoes on and run run run.. he is not interested in helping ou if he is not willing to work with meds first.. I have the interstim and I do love it, I did fall and break it, and I am going in for a new one... As a stim patient, I tried everything except the instills, and my doctor dose not like to do them, and I know what my mom went thru with them. They helped her greatly, but the smell made me sick. There are different instills now. Please make the stim your last resort.

[RAS6]

My Doctor did bring up the Interstim as a possibility at my last visit, but he told me we have to try many more things first. He said it IS NOT for pain and would be last resort for the most part. You can see from my signature I have tried alot of things and he said we would try many more including anti seizure drugs, and possibly some of the more controversial drugs and maybe even Botox (If I can get into the study) before we would go ahead with the Interstim. I think the good Doctors realize it has potential, but want to try less invasive things first. I know many people it has helped drastically, but I personally do not feel ready to try it yet. You probably have more options than you even imagined if you can find the right Doctor, that's what happened for me.


Good luck!

[Sarojini]

Please think about this very carefully; the InterStim is not a trivial procedure. I know this doctor is making it sound that way, but he is also making it sound like he might be in it for the money and not your well-being!

You should not feel "forced" to get the InterStim, ever. You and your doctor should try every med out there and try and find the right combination before InterStim is considered.

I have the InterStim. I got it after a lot of messing with medications, trying physical therapy, and the like. Don't get me wrong; medication did help me - when I was diagnosed I was urinating over 30 times a day, sometimes 60 times. With meds, we got that down to 20-25, but that was still too much.

So, my doctor brought up InterStim, but did not force it on me -- he made it clear it was my decision. After a lot of research and deep thought, I went for it, and it has worked wonderfully for me. I now urinate 6-12 times a day, which is wonderful.

However, I still have pain. The InterStim is not for pain; it is for frequency and urgency only. Medtronic, the company that makes it, even says that. If your main symptom is pain, this therapy is probably not for you, despite your doctor's claims.

You should also know that the Stim is not a cure. You can still have flares (believe me, I know) and you will probably still need to take some of your medications. I am still on IC meds, and they work in conjunction with the Interstim.

The best thing I can tell you is, unfortunately, to find another doctor who is willing to work with less invasive therapies. If, in the future, you end up deciding the InterStim is for you, do a lot of research on this device and take your time making a decision.

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If you decide to do InterStim, Dr.Steven Siegel is one of the best docs for it, but please remember you must decide if it is the best treatment for you situation. It sounds like you are being pressured and not being given any other long term options, which is a crime in my book. These doctors make a lot of money on putting in InterStim units versus general care with prescribing medications, instillations and making/maintaining a non-surgical care plan. So when a doctor recommends InterStim money is always in the background, unless they are at one of the few hospitals/clinics who don't pay per surgery performed, and the only one I know of is Mayo. (We should have a list of those hospitals.)

If it were me, I would go to this board's list of doctors and call a few IC support group leaders to see what they think about various doctors. Then go visit one or two for a second opinion. My first IC uro started talking about InterStim on the first visit before I ever was diagnosised with a condition and it was out of line! Thank goodness for the ICN or who knows what path my health care plan might have taken.

Best wishes,
ads

P.S. As you are choosing treatments a risk versus benefit analysis based on medical science and your lifetime goals are a must. It can be done on a simple sheet of paper with a line drawn down the middle, then add each side up and see which scores the highest. There are almost always risks in every sinlge medical treatment, but some have less than others.

[jen74]

Never rush into any type of surgery without exhausting all other possibilites that are less invasive first. Any doctor who is pushing a surgical procedure before trying less invasive things first is not interested in your well being, but more so in filling his wallet up. I would get a different opinion.
Jen

[funinsun18]

Thank you for all the good advice.I thought I was done with trying all there is.
I've tried Accupuncher,PT,Chiropractor,Biofeedback. I've tried Elmron,Stuff to make you pee orange and one blue ( don't remember the names).I've tried some other Meds but can't remember the names.I've tried bladder extensions with DMSO and bladder Instills.
So you see I feel I've done it all and still have severe pain.I'm on Morphine,Lortab 10/500,Lorasapam,Amtriptilyn.Wellbutrin.
Something tells me there is something more I can try.
I feel if I just except what I have then I'm giving up the fight.I've been fighting for relief for 9 years.I don't want to be on Meds anymore.But now hearing that the Interstim may not be enough and that I may still be on Meds it just doesn't seem like an option for me.

I heard the research center/Doctors are in Maryland.What have you heard about that place?

Thanks
Machele
Hugs to all

[tigger_gal]

Machele,
is you pain bladder pain? or is it the pain you get with the urgency?

[funinsun18]

It's in my bladder. I get urethra pain with urgency. It also hurts full so I have the frequency. I also have vulvodynia, IBS (I'm not taking anything for).Dr. Seigal said I have pelvic floor muscles that are really hard. I've known that for some time now.When I do do something like rake I pull them. Needless to say I don't do that much.

Hugs
Machele