Interstim Implant - should I get it?

I posted this earlier as a reply tro Anne5762 posted on Dec29 08. I guess if I want an answer, I should start a new discussion, so here it is again.

I’m in the test stage now; the leads were inserted on April 7, 2009 under general anesthesia. While I was under the Urologist also did some bladder and urethra stretching and some biopsies which caused irritation – I’m just now getting over the irritation. .
So for I have had little relief from the InterStim stimulations, but it could be the irritation from the stretching is not allowing the stimulations to help. I’m being pushed a little by the Medtronics Rep and the Urologist to decide by Monday April 20 if I want the implant or have the leads removed.
A little background: I’m 69 years old. I was treated for aggressive prostate cancer in Nov. 07 with seed implants and external beam radiation Jan- Mar 08. Since then I have had severe overactive bladder and urgency problems- some episodes with a lot of pain. Overactive bladder drugs do not work. I typically have 6-8 nightly voiding episodes and upward to 30 in 24 hours. I use a package of 52 male guard pads and 20 adult undergarments every 10 days or so.
The voiding diary being kept now during this test phase shows 20 to 27 episodes in 24 hours, but the nightly episodes have dropped to 4 in the last couple of days. However, the Interstim stimulation seems to make the urgency worse. I pray I can make the right decision on Monday.

Wally

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I have had Interstim devices and after a long and excruciating process, not only am I now left with the same bladder issues as before but an array of nerve damage and serious residual after effects. I am also a member on one of the various support sites for people "after Interstim" and there are many of us. I wish I had known of other patient experiences prior to getting it. Yes, I know the pressure Dr./Mfg. put on a person to go ahead and get it.
I posted my experiences with it on Annie's earlier post on Interstim if you would like to read it. I cannot urge you enough to look into experiences of those of us that have been there with this and not just in the beginning, because damage is not always apparent when device first goes in. They do many "reprogrammings" telling patients that it is just a matter of getting the settings right.
Some damages don't occur for time....some not until after device is removed, etc.
God Bless you in whatever you decide, but don't let anyone pressure you do anything medically until you have completely checked it out. I sure wish I had!
Will be praying for you.
Raelyn

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Hi! I have had interstim and know numerous people since the late 90's. I am one of the numerous people nationwide with severe damage due to interstim. I was told all you were like others. I endured numerous surgeries for them to move it from side to side. Those are called revisions. I also endured numerous reprogrammings. The interstim has to be reprogrammed an if you have problems like many it has to be reprogrammed often. I was reprogrammed up to three times a week. That is not included in your surgery fees or doctor fee. I know uro's have pushed this implant for years and tried to force people into decisions before they have had time to research this product. I urge you to please research this product. I have a permanent spinal cord injury,sacral nerve injury and did not walk at one time before mine was finally removed. I was abandoned by two doctors that implanted my device which is something others have run into as well. When things went wrong with my interstim the doctors were no longer my doctors. Yet they were real willing to implant the device. I finally found a doctor to remove it when I could not walk anymore. I see a neurologist and have now for almost 8 years for my damage. I am not alone on this issue of damage as there are thousands of us nationwide. Some worse off than me and some not. It is a very serious surgery and needs time to look for other options for you before deciding to agree to it. You can go into the FDA's Maude reports and look for those with damage. All of us with adverse reactions to interstim report to the FDA adverse reactions dept. Please look into this further before agreeing. I like so many have permanent nerve damage to my spine etc. It has effected my life forever on what I can and cannot do. I use a cane,walker and have a wheelchair prescript if need be. I no longer do any activities because just to walk a room is difficult for me. There are sites as well that people know and talk more about interstim. Remember it is your body and you do not have to agree to anything no matter how much your being pressured. I have heard that pressure story all too often. When things go bad with interstim there is no turning back. Research it, find others that have had it and don't make your decision until you feel comfortable it is for you. Best of luck you you,
Sharrylynn

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Realyn and Sharrylynn,

I am so grateful for your replies. I was about to decide that Interstim is not for me after walking my dog this morning with 4 voiding episodes within that hour - with the stimulation up and thumping. So your responses cements my decision to have the wires removed. I believe the stimulation actually makes the urgency worse.
I originally wanted a cystoscopy to check if there was something inside causing this. My old Urologist wanted to do the cystoscopy in his office without sedation- ( I'm a coward) My primary care provider referred me to another Urologist who agreed to do the scope with sedation and at a hospital. He also suggested I may be a good candidate for Interstim. He said my insurance will pay for the test and while asleep for the scope he could insert the wires for the test. I agreed and was hopeful it would work - I have had interrupted sleep for over a year with 6-8 nightly voiding sessions, plus having to wear pads and proctective undergarments because of a few leaks.
But now with Interstim test stimulation I have more leaks because the stimulation seems to make urgency worse.
I guess the radiation treatmeents for the prostrate cancer damaged some nerves, which probably is a good thing that prevented the Interstim from working even a little.

Again thank you both and God bless you.

Wally

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So relieved for you to have decided against the Interstim. I wish I had. I know how hard it can be to have any urination problems as do so many others. I wil pray there will be a better option to help people like us, without causing more damage than we started with.
The device did work for me, but the damages were catastrophic and life-altering. Wound up having to live with the same problem I had to begin with and severe damages on top of it. Turned out, the cure was much worse than the condition!
There are lots of support sites to share on for those of us faced with incontinence and that has made a huge difference for me in coping. I belong to I_shine, which is just one of many, and am new to this site.
Keep the faith and God be with you!
Raelyn

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I have to tell you Wally I just breathed a huge sigh of relief on your decision. I was so worried for you after experiencing what can happen with interstim,listening to other women for 8 years now tell their stories and beg for help as they endure that device. I had shocks that went down my left leg so intense that my left leg is damaged for life. The shocks sent by the interstim were so intense that it would bend my foot at the arch therefore my foot forever drops and will. I wear a brace on it now. The damage to the nerves have left my entire body with severe damage. I don't walk right as my gate is off. I cannot stand long, or sit as a lady would due to any pressure on the implanted sites incisions also have damage in them and hurt very bad, then my legs go even more numb than they already are. I have bad ciruclation in the left leg due to how much damage in in there. I have damage to the spine as I said and the sacral nerves where the leads go as well. This has caused damage to from the waist down with internal damage that is paralysis. I am so lucky as I could'nt walk and now I can,not far but I can walk. I cannot raise my left leg up on my own. I have to have my hubby,or doctor raise it to get it up on a couch or whatever, or I have to bring it up myself. It is basically not too useful. This is just some of what I endure and others endure across our nation. The damage is traveling up my spine as well. Like others. I am so glad you are considering not doing this. I also want to warn you that you will get a lot of pressure to the fact you want it all out. That is common and a given. I can also warn you that if you say you have heard things they will tell you they never have. That has never changed since the 90's to being answered back that way. There are also device failures too and I had several surgeries on my interstim as they moved it from one side to the other, and the generator came out of the pocket and had to be put back. I had one with device failure as well and could never no matter what shut mine off to get myself help. I because I had so much damage and was stuck with that thing in me looked finally for a neurologist to take mine out. I had mine removed that way. After the manufacturer would not help me and two surgeons who put that device in, in two different states dropped me..to which I had been warned by others I decided no one was taking mine out but a neurologist because I wanted to walk and more. Your probably going to get a lot of pressure but remember it is your body your right to say no. It is your right to your health care decisions. I so wish with all my heart I had known before hand and I would of never had one. I lived on a ranch in CO and didn't get on a computer and never looked into it. I had trusted the doctors but no more.
I am sorry about your cancer. I am glad you survived though.
God bless,
Sharrylynn

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To Everyone here, thanks for being so candid. This is a great way to get the word out. I am new today. I want to know if anyone started out the same as me in the symtoms below. I am only 50 now but have endured issues now for years. My Dr. only got me on flowmax last year and then in Dec with Barthencol(SP?) Anyway it start with the usualy cough sneeze leakage, then retention of 2 4 then 8 oz then up to 11 and 13. I would have anything from don't feel the urge and bladder full, do going every 15 minutes little dribbles to emtpy like I feel better and only giving 2 oz and holding 5 and not knowing it. Then at times I know its there. I get infections, I get blood in urine. I had the Bio Therpay, keegling but can't get to stage 3, then the Urotest to see what I hold. They even tried to catherder in the office and thought I might have diverticulum in the bladder. So I find out about the intersim and am told that I am not a candidate because the medicine is starting to work,,,,why did he wait so long to give me anything....then I am told you have to be voiding on yourself all the time, no control to be a candidate and the meds are'nt suppose to be effective. SO I think I am going to have to self catherder, so then when this was being done, it was so painful, they could barely do it. So when I had the cysticscope, I felt a little better light it got stretched or something. Does any of this sound familiar did you go through this. After reading the stories, it doesn't sound like a good option...should I push for it. I am afraid I am going to have kidney damage or bladder will burst etc.

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Remi,
Your bladder won't burst as long as it is able to emtpy. I cath and if you need to cath on a schedule to keep your bladder empty.
Now I am very blunt on interstim only because I have talked to over the years into the hundreds with damage from it. Please do not get it and if they pressure you tell them it is your body. I just came back from neurologist I see in Denver and she is terrific, very educated,on all kinds of Medical boards and is working hard with other doctors to do something about that device, and goes to Washington to advocate for patients as she really cares about us. I think you might of read my damage and Raelynn's. We are only two of into the thousands across our nation. My spinal cord is forever damaged from interstim effecting my entire lower body. I saw my doctor today and I am getting closer to life in a wheelchair. This damage that interstim causes to the spine and sacral nerves is not ever ever talked about by the manufacturer, or their Reps, or urologist. They since 1990 have yet to admit this happens. Every time I go I come home crying if my news was bad news. I am a strong woman and held my husband while he died of brain cancer and never shed a tear during his most beautiful death at home on our ranch. I cry every time like now that I come back with bad news on how my injury from interstim is progressing. It breaks my heart that for 8 years I keep giving up my life and what I once did as my legs will never function again as they should, or all the other damage I have. I would rather cath than of had this. It was in not one single brochure and still isn't. I never hear anyone that contacts me for help to get it out and endure the passing of days till interstim is out of their bodies .....say they so wish they never ever would of allowed it. There are some other things that might help you. I use them and my hubby has prostrate problems and he uses them. I would be glad to pass that information on to you. He too takes Flomax and yes when they go in like that to look inside your bladder it does stretch it somewhat for a time. I am curious since men can get IC as well if they told you if you have a pinpoint bleeding, or if you have IC or the Hunner Ulcers. There are things that can help that.
While at the neurologist today she said to me when I sat down,"I had a lady come in and has your bladder disease Sharry and they want to put a interstim in her and I told her noooooooooooo. I am sorry if I have upset you but I just know that can go from good to bad real fast, or in a few weeks, or day one. I also know once the problems start there is not much that can be done. It scares me so as I live like others with serious damage from interstim. We are all reported to the FDA as they keep track of the people with issues,damage,injury,etc. When they get enough adverse reaction reports and they have been gathering since the 90's and have a lot now in their Maude Reports which are public they will pull it off the medical market. Another issue is the amount of money that is made off of that device. Please go into the New York Times if you can and find the article about Medtronic paying kickbacks to put their devices in. Very disturbing story and broke my heart as my surgeon turned out to be one. I urge you please do all you can and know that me and if Raelynn responds are only trying to help. I have met into the hundreds with damage and been on the phone with numerous people all over this nation while they try to endure what it does till it is out. I know it appears like it is just two of us but we are two of many.
We set up a support site for bladder,neurgenic bladder as your sounds a bit like that, and neurostimulator. Your so welcomed to visit and join if you want to and talk with others on the bladder,interstim,etc. I also want to urger you to please if you decide to get that device to get it in writing before you do anything that they will take it out no matter what if you say take it out. That is so important and take a witness with you as well for that. Before you ever get implanted get it in writing that for any reason at all you want it out they have to remove it. I wish you the very best.
I_shine-subscribe@yahoogroups.com
Sharrylynn

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Hi Wally,
I am thinking you said you would be seeing your doctor today on the interstim. I was wondering how that went.
I saw my neurologist on my interstim damage and am moving closer to being in a wheelchair as my legs continue to worsen and the spine.
However I am not writing about me right now as too upset. I am writing to see how it went for you today and what was decided for you.
Bless you,
Sharrylynn

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Remi, I am familiar also with what you are talking about. I have to self cath all the time in order to go (have neurogenic bladder) which means bladder will not constrict due to nerve damage. When I first began cathing it was terribly painful. Then support site women suggested trying a smaller size cath and that helped alot, but not totally. Over time it got easier to cath with smaller caths (no larger than 10 or 14 French size caths). I hope this will help you too. You are not alone in this struggle. I belong to same Yahoo Group that Sharrylynn does and have found lots of support and information from others in my same spot. She listed address in above posting if you are interested. Either way, know that you are not alone and I, for one, will pray that you find what is best for you.
God's blessings..
Raelyn

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Thanks again so much. I thought after reading up on the neurogenic bladder, that I had it, MRI came out fine. So how did you get nerve damage?

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The wires are coming out Thursday. The InterStim test phase did not produce any relief. The urologist informed me today that people that have had radiation treatments in the pelvic area are less than 50% to have sucess with the interstim.

I thank all of you for your replies- it really helped me make up my mind. I'll get back on here Friday and let you all know about the wire removal. I'm not anticipating any problems, but I'll let you all know.

Thanks a lot

Wally

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My nerve damage is direct damage to the spinal cord and sacral nerves due to interstim.
So many surgeries that they are known for concerning this device and tons of reprogrammings.
However I am not alone and there are thousands of us across this nation. Some don't walk at all. Some are better off than me and all kinds of very serious issues.
Sharrylynn

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Wally,
I am glad that ordeal will soon be over and I am sorry your going through this.
You will be in my thoughts and prayers on Thursday. It should go just fine for you since none of that has been in there long enough to grow to you.
Sharrylynn

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Wally, I wanted to check on you.
I have a UTI that has moved into my kidneys so am really sick, but I had been thinking of your interstim trial removal and hope all went well. I wanted to check on here and see if you had posted you were ok from the removal.
Please take care as many care about what your dealing with.
Sharrylynn

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The interstim procedure is a tough decision and I know the many doctors I saw told me how easy it was and that there were NO risks. I learned otherwise with many complications. Many hospital stays. Many repeat surgeries. Infections and so on. Also permanent nerve damage. The unit can help some but there are others that have had lots of issues added to the conditions they were already dealing with. I wish you the best with this!

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Hi Sharrlynn,
I have the interstim implant. It was put in Jan. 8th and now I'm feeling a burning sensation where the implant is. Did that ever happen to you? I feel the burning on the inside around the scar. The interstim is helping me with the OAB.
Anne

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Anne,
You should have no burning what so ever around your implant sites. That is usually a sign of infection and that needs to be attended to by the surgeon that implanted it. Do you have any redness, or swelling,itching as well at your implant site? Are you also running a fever?
Please call your doctor that implanted the device and get in to be checked. If infection has set into that site you need antibiotics that can reach it. Also if infection has set in there they need to take the unit out as it causes complications.
Please take care and let us know how you are.
God bless and will be praying for you,
Sharrylynn

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Sharrylynn,
I am still having burning at the sites but no fever. It hurts to lie on my back. I am going to the doctor Monday. I called Medtronic and they told me that some patients have complications and that I should see my doctor.
Thanks for your prayers.
Anne

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Definately go and if your condition woresens over the week end go a ER. Demand they get you help. The problems with this device if something is wrong are not minor. I am sorry that was all Medtronic had to say to you but it is what they always say. However if you worsen you don't wait till Monday. The some Medtronics told you is patients into the 10 thousands. It is your body and you demand help if you need it.
I am sorry as I know many people have high hopes for this device. You just take care of yourself and get help if you need it. Turn your unit off until Monday to see if that helps you. If you don't want to turn it off then turn it way down low. I thinking when you say burning your talking of the generator site? If so that is not ok at all this far out of surgery. There has been huge issues with problems in the pocket. You need to be seen to rule out infection or any other complication which there are. If you have infection it is very hard for them to reach that area with antibiotics. If you have a severe infection they have to remove the generator. It should of been told to you when they did your surgery. So that pocket can heal. It is a difficult area to heal and for antibiotics to reach. Watch for redness,swelling,any drainage and keep track of the burning. I suggest you turn the unit off because of if your getting fluid in there. That does happen.
I am so sorry your going through this.
Sharrylynn
I_Shine-subscribe@yahoo.com

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Hi Sharrylynn, I went to the doctor and the doctor did an ex-ray. They told me to turn off the device. The burning is letting up. The NP said that a nerve might be irritated. I have not had an IC flareup and the OAB is getting better with the frequency-urgency.
How long was your interstim in before you started to having complications? When did you get the implant?
Take care!
Anne

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