Doc hung up on interstim

[nogo]

I went to a neuro uro specialist today and he had all my chartwork from previous Uro, GI and GP. He never bothered to look at all of it to include CT scans, MRI's, urodistention, etc. After listening to my tail of misery (frequency, urgency, sometimes going up to 30+ times a day) he said I needed urodynamic testing (I'm terrified of catheters) and Interstim. Period. He couldn't think past that. I asked for a less drastic measure like trying other OAB drugs or something other than heading straight to Interstim, but he had a one track mind. Will someone else please tell me that this guy is over the top and off his rocker! He freaked me out and upset me to the point of tears because he had no in between suggestions. Just Interstim. It's like he has to meet an Interstim quota or something. And he kept telling me how great his urodynamic nurse is. I'm truly upset over this. Any thoughts from those of you who have had Interstim. Didn't you try other things first?

[Sally939]

I work for Medtronic's urology diversion. I do not sell Interstim I sell a proceedure for BPH. I am under the impression interstim woks really well for some types of IC. But I understand that you do not want to jump to it. I would not either. I think you might want to make an appointment with the office and the rep. With interstim you work closly with the rep. I know that at first you do a trial and I think all you do is carry a box. Good Luck!

[Sally939]

All I do is work with docs. Some great docs hung up on one thing becasue that is what is best for you. But if you think he is hung up on the money...run.

[kadi]

Hi No-go,
The interstim is a two part operation, usually 2 weeks apart. The first surgery is a trial where lead wires are implanted, and then if it works, 10 days later, the device is implanted in one of the buttocks in a second operation. It is an in-hospital surgery, is quite costly, and a person with an Interstim cannot have an MRI while the implant is in the body. It is not a first line treatment for IC, it should be considered after other things have been tried & perhaps found lacking.

The first line treatments for IC are:
Diet- http://www.ic-network.com/handbook/diet.html This is very important, all the medicines in the world can't help my IC if I'm not following the diet.
Elavil (tricyclic antidepressant which helps with nerve pain, frequency, sleeplessness)
Atarax (antihistamine to reduce mast cell activity in the bladder which is part of the inflammation)
Elmiron (medicine to recoat the bladder lining)

Some patients also use bladder instillations, medicine put directly into the bladder. I was horrified by this when I first got IC, dreaded even the sight of a catheter, but have found these treatments to be very very helpful. And once I got used to it, do my own treatments at home without problem.

Sounds like you might want to consider a second opinion if none of these less invasive treatments have been tried.

Welcome to the ICN! Hoping you are feeling better very soon-

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Nogo,
I would run not walk away and wouldn't even waste my time with doing testing with this doc. He is out to make money. Doctors make a lot of money doing the InterStim Surgery, but they don't make a lot of money seeing you in their office and consulting regarding PT and meds. InterStim is one of the last steps for most IC patients. It is a procedure with a great deal of risk and not even proven to work well. I have set down in my urogyn's office with doc from Medtronic and he couldn't produce any good clinical studies for me. Neuromodulation is a controversial medical treatment. I would be curious to know how much speaking/training this guy does for Medtronic as well. (You might be suprised. Medtronic can pay him to speak and do training, which can add up to a nice bonus for doctors. Legally they are suppose to notify patients of this, but there are doctors who break the law and don't...)

InterStim has helped some IC patients but the procedure and having the device in your body has also injured people and made them worse. My problem is the lack of documentations and tracking of the results. (A good medical study requires 100s of people, not 20-50, and tracing the results over years. Why hasn't this happened? All of the InterStims are registered and numbered.) Also the compensation issue and the lack of transparency with Medtronic, which probably isn't much different than other medical device mfg. This may be a treatment option you consider down the road and there are ICN message board members who have been helped by InterStim.

Please be careful. There is plenty of support on this board as well as IC support groups accross the country. Contact your nearest support group leader. Take a look at the doctors on this website. I wish you the best. I know it is not fun sorting thru decisions while not feeling well.

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P.S. I believe IC patients all over the country have experienced exactly what you did with many doctors. It happened to me more than once and I refused, the first time the doc treated me like dirt. He ran the insurance approval thru before I knew it, but thank goodness my insurance rejected it. Then the care was all down hill from there. He just wanted to send me away to a pain clinic. I begged him to try six DMSO treatments before leaving his care, and he did let me do them. Have you looked at the handbook on line here. It might be a great reference for a stepping stone of treatments for you to try instead of going for the end stage treatment right away.

[humpieumpumkin]

I have the stim too, and although I wish I would have tried it first, there are lots of people who are successful with less drastic measures. I would consult a second opinion if you are not comfortable. Keep in mind if the other methoods don;t work, the stim is always there as an option. Ask me any questions you may have.

Erika:hi:

[BrittanysDance]

If this is your FIRST visit and opinion and he NEVER bothered to look at your charts (uhm...yeah..I'd run fast) - then I agree with the the others, Ads and Kadi - walk away and get a second opinion. You havent tried all the meds yet - and they MAY work for you. Before I put a surgically implanted device into my body - I'd surely exhaust EVERY OTHER OPTION out there - and the surgical implant would be my last resort.

While it does work great for some people - those people I do believe have tried medications and other methods (PT, biofeedback, trigger points, etc) before doing Interstim.

Definately get a second (or even third) opinion. Your instincts are telling you your answer - otherwise you wouldnt of posted and have doubt already - so trust them.

Hugs,
Brittany

[humpieumpumkin]

Yeah I tried everything but botox, DMSO-personal issues, and CyA.

Erika:hi:

[ICNDonna]

Even those who have successful interstims will tell you this is a last resort step and all other available treatment options should be tried first. And they will tell you that it is not for pain. You'll want to read the forums on neuro stimulation before considering this option.

That doctor may have had some successes with the device and very probably feels it's the greatest thing since sliced bread, but there are some who have problems and you need to consider the risks as well as the successes.

Donna

[nogo]

Thank you all for your input and opinions. I trust this board more than my doctors since I know all of you have been through so much in an attempt to find a tolerable treatment. I have not even officially been diagnosed with IC. I had the hydrodistention (different URO), and that was clean, but as we all know IC has many faces and can't be definitively diagnosed with one exam. Still, he wants to jump right into interstim. I don't have pelvic pain, just the frequency and urgency and that has lessened somewhat in the last few weeks. Instead of 30 times a day, I go maybe 15. But there is the sensation of needing to go pee that stays with me most of the time. Have you all had to go through urodynamic testing? That terrifies me and he was utterly insistent that I procede with that process. As I said, I have a pathological fear of catheters and from what I understand the urod. test would just show if the urethra is spasming. If so, he would put me on an OAB med (he said). If it is normal, then he would take interstim off the table and tell me to stop drinking so much water. I don't drink a lot anyway and I am supposed to drink a lot more because of kidney stones (4 removed surgically). He said if the kidney stones came back due to less water, then we'd have another issue. I just don't think this 'expert' knows what he is talking about! He works for the university, not private practice so I don't know how much he realizes financially from all this stuff. He gave me elavil, but I am already on low dose Valium to help relax the bladder and he wasn't sure if I could take those together, so he told me to ask my GP if it was OK to do that!!!! He seems clueless. Is urodynamics pretty awful? It sounds so to me.

[hdb1982]

saw my uro today, he spoke to me a total of 3 minutes, like always, hands me some med samples, didn't tell me what they are and told me he wanted to do interstim. i asked what it was. he handed me a brocure htat has 5 lines about interstim and told me to do my own research and let him know when I se him in august. not willing to increase me from 7.5mg loratab to 10mg because he said the 7.5 is stronger. i don't want to jump into surgery unless it is last resort. any suggestions?

[patricia1]

This is from the eyes of someone that has really severe IC and have had 2 InterStim with failures with both of them.

That being said, yes InterStim has helped some IC patients, but usually this is used as a last resort when all other forms of treatments have been tried and failed. Going to a doctor that suggest this as a first line of treatment is not the norm. I would find and get a 2nd opinon. There are many less invaisve forms of treatments that should be tried first.

For some the InterStim has been a life saver on here, and for them I am glad and I do support those trying and getting the InterStims, but I am one that had problems with both of mine. Although I did not have continued damage from it there are some that have.

I would highly suggest research and 2nd opinons before doing this.

[rjyoon]

I think I tried 26 treatments before I went to Interstim. I'm glad I tried them first, even though Interstim turned out okay for me.

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Nogo,
The more speak about your appointment the worse it sounds! It is time for a second opinion. As you are posting it is evident you are uncomfortable with this doctor. It is hard to be confident when we are the patient, but it is our bodies so ultimately whatever treatment(s)/procedure(s) we select we must live with them not the doctor. If you InterStim would fail believe me this doc would probably not pay much attention to you. Also, if he really doesn't know at what dosages you can take elavil and valium, then I would fire him. Those are meds frequently prescribed for IC.

Below is a title to a great book. I bought it in 2001 and it was an easy read.

Second Opinions: 8 Clinical Dramas Intuition Decision Making Front Lines medn (Paperback)
by Jerome Groopman (Author)

Even university docs get paid per surgery unless it is somewhere that is rare like Mayo. Money makes the medical world turn... That isn't bad, but we as patients have to understand the system so we don't get hurt.

Urodynamics was painful to me, but I was already in pain so it was much more. If your doctor needs the info and it will help you diagnosis, then by all means do it and you are not sur e you have IC yet. A properly done urodynamics could mean a diagnosis. (In my experience uros all over the country like to do their own urodynamics and said the other one did it the wrong way or thats not the way they do it... So, before I did a urodynamics I would get with a doc you are confident with his/her abilities.)

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Thank you all for your input and opinions. I trust this board more than my doctors since I know all of you have been through so much in an attempt to find a tolerable treatment. I have not even officially been diagnosed with IC. I had the hydrodistention (different URO), and that was clean, but as we all know IC has many faces and can't be definitively diagnosed with one exam. Still, he wants to jump right into interstim. I don't have pelvic pain, just the frequency and urgency and that has lessened somewhat in the last few weeks. Instead of 30 times a day, I go maybe 15. But there is the sensation of needing to go pee that stays with me most of the time. Have you all had to go through urodynamic testing? That terrifies me and he was utterly insistent that I procede with that process. As I said, I have a pathological fear of catheters and from what I understand the urod. test would just show if the urethra is spasming. If so, he would put me on an OAB med (he said). If it is normal, then he would take interstim off the table and tell me to stop drinking so much water. I don't drink a lot anyway and I am supposed to drink a lot more because of kidney stones (4 removed surgically). He said if the kidney stones came back due to less water, then we'd have another issue. I just don't think this 'expert' knows what he is talking about! He works for the university, not private practice so I don't know how much he realizes financially from all this stuff. He gave me elavil, but I am already on low dose Valium to help relax the bladder and he wasn't sure if I could take those together, so he told me to ask my GP if it was OK to do that!!!! He seems clueless. Is urodynamics pretty awful? It sounds so to me.

[nogo]

Thanks for the input. I wish there was a way to avoid urodynamics. Like I said, I am terrified of catheters. I have had them before, but find them excruciatingly painful no matter who does them or what size they are. The doc said that nothing could definitely dx IC and to that end, I dont' know why he wants the urodynamics if it won't tell him anything. My hydrodistention showed 900cc's held in the bladder twice. Still, he didn't think that was enough info. Urod. would only help him take interstim off the table he said, or make it definite. This whole issue is just haunting me and the urodynamics ordeal sounds excruciating. I'm not a coward, I actually have a pretty high pain threshhold, it's just the darned catheter thing.......Pluse I suffer awful IBS-C and that contributes to my discomfort greatly. What a dilema!!!!!!!!!!!

[hdb1982]

I was diagnosed through urodynamics and cytoscopy. It wasn't nearly as bad as I thought it would be. I think I made it worse by getting so worked up. My dr actually gave me Valium to take 30 mintues prior to the procedure. The worse part was the lidocane they used for the cath insertion. After the procedure it gave me a constant feeling of needing to go untilit wore off. It was just a wierd censation. I was most concerned about the balloon they place in the rectum and inflate with air to place pressure on the bladder. I didn't even know it had been inserted until they told me. They had me on a chair that the seat of is a toilet. Once the test is complete they told me to " go ahead and pee"so they could measure the strain of my output flow. I was kind of embarrased to pee right in front of all of the staff but I had to go so bad I didn't care. Best of luck when you go.

[nogo]

Can you tell me what it is they found in the urodynamic testing that assured them it was IC? That part I don't understand.
Thank you for the description of the test. If I do it, I need to know what to expect. It helped to know what you experienced. Thanks

[hdb1982]

Urodynamics is a study that assesses how the bladder and urethra are performing their job of storing and releasing urine. Urodynamic tests help your doctor or nurse see how well your bladder and sphincter muscles work and can help explain symptoms such as

incontinence
frequent urination
sudden, strong urges to urinate
problems starting a urine stream
painful urination
problems emptying your bladder completely
recurrent urinary tract infections

Most urodynamic testing focuses on the bladder’s ability to empty steadily and completely. It can also show whether the bladder is having abnormal contractions that cause leakage. Your doctor will want to know whether you have difficulty starting a urine stream, how hard you have to strain to maintain it, whether the stream is interrupted, and whether any urine is left in your bladder when you are done. The remaining urine is called the postvoid residual. Urodynamic tests can range from simple observation to precise measurement using sophisticated instruments... I found this info on http://kidney.niddk.nih.gov/kudiseases/pubs/urodynamic/index.htm...I couldn't think of a way to explain it. The best thing you can do is relax and trust your doctor. If he fells that this test is necessary, and all other prior steps have been followed, it will more than likely be a major part of diagnosis and understanding how severe the condition is.

[nogo]

wow! Thanks for that totally indepth explanation re urodynamics. I have a hard time trusting this doc right now, but I have told him that my only issue is frequency and urgency. The ultrasound showed that I had totally emptied my bladder in his office, yet I went 3 more times right after that and I went a fair amount each time. I'm still worried that urod. is overkill for me. They keep doing things and still have no explanation. Can you tell me what they do if they find your urod. test abnormal? Wouldn't they just put you on ELavil or muscle relaxants or OAB meds anyway? Why suffer the pain and embarrassment of the urod. test. I am definitely biased because of the cath terror. That really has me over a barrell and he doesn't even pay lip service to that. HE simply doesn't act like he cares. No reassurances, nothing. Scares me to death.

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Nogo,

You just don't feel comfortable with this doctors and it sounds like your heart know it is time for you to leave him. I don't think you will feel comfortable with his office administering any medical procedure/testing. I wouldn't because each time you post it sounds worse. I would run not walk away from his office. I am sure the women on this board could help you find a new doctor or a support group leader in your area. Even if you don't have IC, a lot of the uros who treat IC are female urologist (many of the uros treat mostly males) and have some degree of beside manner because IC is a terrible disease.

I think changing doctors alone would make you feel better about your medical care and any future testing.

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[nogo]

Thank you for understanding. This is the 'specialist' uro that I went to after my original uro just couldn't help me. He never suggested anything except maybe I'd just get better. The one I just saw as a neuro uro, but he had already spoken with the other uro (they are friends) and came in with a preconceived plan for me without ever talking to me. He said urod and interstim and he was stuck on that. I would love to find a female uro here, but I don't know where or how to get a recommendation from one in my area. I don't want to take potluck, but I do totally agree with you that sometimes women uros are likely to be more understanding of what we go through.
You have all been so considerate and understanding and I thank you from the bottom of my heart. This is such an all consuming issue that I can't stop focusing on it. No disease is good, but I can't believe I have this problem with an inborn terror of catheters. How stupid is that! Where would I go to find a recommendation for a good female uro in my area?

[ICNJess]

I am so angry right now I cannot see straight! You haven't even been officially diagnosed and this guy is offering you InterStim right off the bat?????

That doctor is out for himself and the nice chunk of change he'll haul away with after the procedure!

Everyone's given you great suggestions and input, I just wanted to chime in here and also tell you to run from this doctor. I had a failed InterStim and honestly, I probably wouldn't be so angry at Medtronics if it wasn't for a few factors:

1.) The lack of data available;
2.) The lack of knowledge available to patients, such as what could make the InterStim move and what could cause adverse effects;
3.) The way Medtronics handles their "problem" patients;
4.) The way Medtronics DOCTORS handle their "problem" patients;

I could go on and on. I'm pretty bitter about my whole ordeal and I'm not really angry at the unit itself; it works for some and hey, that's great. It is wonderful that some patients can have such great relief. I'm so angry at the way I was treated during my ordeal and how I am still being treated by the very doctor who did the surgery and the doctors I deal with who are in Medtronics' pockets.

If you do choose this method of treatment someday, please go into it with an open mind to the possibility that things could go awry. Sorry to get so worked up...my nerve pain is KILLING me today and it's been a long week.

I hope you find a good treatment (and doctor!) soon. :grouphug:

[pj77]

Yeah, I agree. Please look into seeing someone else. You can post a new topic and ask for suggestion for people to pm you a good urologist/or gyno in your area. Put a title on your post like "please help find good doctor in such and such area" and ask people to pm you.

My point is there are lots of meds that can help and lots of things to try.
Good luck and you will find a good doctor that will be more aware of the many IC treatments. Better to get one now than waste time with this one, that seems to be offering only one treatment and a more invasive treatment, when you might like to try other things first. .

[nogo]

thank you pj....I will post and try to get recommendations for a uro gyno in my area. I aluded to that in one of my posts, but didn't get any replies and I'm not sure about how the PM works. But, I will try to do that as I would love to get to someone who will actually examine me (the interstim uro never laid a hand on me) and try to help me. The frequency is keeping me a prisoner at home. I have only left my house a few times in the last 6 weeks because of this problem. I'm utterly miserable.

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Nogo,
To private message someone just take your mouse and click on the person's ID/Name in a post you see, then it will bring up the option to private message them. (hope that explanation was clear -- not to great at the computer myself)

As far as finding a doctor from members' experiences you may want to post under the section called ICN - Interstitial cystitis information & support, then sub topic MEET OTHERS BY REGION (USA) & find your region of the country.
http://www.ic-network.com/forum/forumdisplay.php?f=12

The ICN as well as the ICA keep lists of doctors who treat IC.

Here is the link on the ICN for finding docs:

http://www.ic-network.com/handbook/mdlocate.html

NOTE: While you are searching for doctors, please remember there are various medical specialies who treat IC and women's urology health issues. It may be a urologist, gyn, urogyn, neurologist or even a pain mgmt. doctor, so keep an open mind. IC is a new disease to the medical world so if you can find someone who is actually treating patients in a comprehensive way, then you are probably fortunate.

You might also look for the closest support group leader listed on this board and call her. Usually support groups are aware of good doctors. They won't mind you calling or sending them an e-mail. I think below is the link to the latest list: (Moderators please correct me if this isn't the most up to date list. Is it on the board in another place?)

Support Group List
http://www.ic-network.com/forum/showthread.php?t=30094&highlight=support+group

It sounds like you feel comfortable with the direction you are headed in seeking our a second opinion. I know when you are in the kind of pain you are describing and thinking about undertaking the task of finding another doctor looks like climbing a mountain, but hang on! Just take it one step at a time and keep breaking off the task in little actions as you feel well enough to proceed. There are plenty of members hear to support you in this journey. Don't be shy in asking for the information you need, and remember no question is a dumb question.

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thank you pj....I will post and try to get recommendations for a uro gyno in my area. I aluded to that in one of my posts, but didn't get any replies and I'm not sure about how the PM works. But, I will try to do that as I would love to get to someone who will actually examine me (the interstim uro never laid a hand on me) and try to help me. The frequency is keeping me a prisoner at home. I have only left my house a few times in the last 6 weeks because of this problem. I'm utterly miserable.

[nogo]

ads......thank you so much for your support and the information above! That is greatly helpful and I will indeed follow your advice. Thanks for taking the time to 'walk me' through this. nogo

[mary124]

Sounds like one of the doctors I went to. He wanted to do this but since I have a heart valve replacement my cardio doctor said no that since I would have to be off my coumadin (blood thinner) on and off for a month) no way, and after this, the doctor really wouldn't even look at me. (he was out to make money!!) so had his PA do everything after he did a hydro. Had complications with that including blood clots and bleeding for almost 10 days and he wouldn't do anything about that (blood clots were removed) but he said the bleeding would stop on its own--the PA said that since I'm supposed to be on coumadin-shouldn't he do something? his response? "no, it will stop on its own-- the PA and my cardio was really livid(?) so after all said and done with this doctor I will not go back to him even if he is the last doctor on earth! But getting back to what the others said, this is the last line of treatment and I knew that there was other things that he couldn't tried on me and he didn't, so like everyone said, run don't walk and find yourself another doctor.

[nogo]

I am running from this doc...refuse to go back. Thanks to this list I was well informed when I went to see him and when he mentioned interstim first and foremost, red flags went up in my head all over the place. I mentally dismissed him totally after he said that. He simply wasn't interested in trying anything else! I will find another Uro, re recommendations from this list and hopefully he will be willing to work within the medication parameters to begin treatment. It's sad. There are so many good docs, and sadly docs like my last uros really give medicine a bad name. Thanks again for the input.

[ads]

Perhaps you consider reporting this to your state's medical licensing board.

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Sounds like one of the doctors I went to. He wanted to do this but since I have a heart valve replacement my cardio doctor said no that since I would have to be off my coumadin (blood thinner) on and off for a month) no way, and after this, the doctor really wouldn't even look at me. (he was out to make money!!) so had his PA do everything after he did a hydro. Had complications with that including blood clots and bleeding for almost 10 days and he wouldn't do anything about that (blood clots were removed) but he said the bleeding would stop on its own--the PA said that since I'm supposed to be on coumadin-shouldn't he do something? his response? "no, it will stop on its own-- the PA and my cardio was really livid(?) so after all said and done with this doctor I will not go back to him even if he is the last doctor on earth! But getting back to what the others said, this is the last line of treatment and I knew that there was other things that he couldn't tried on me and he didn't, so like everyone said, run don't walk and find yourself another doctor.