Interstim and pain relief

[Jean from GA]

Everyone,
I really need some help here. My wonderful uro has really began to push for me to have the interstim trial. Frequency and urgency are not my major problems, but pain definitely is! How many of you have had your pain levels reduced by the interstim? I know that pain relief is "a by-product of the device not its intended use". Help me decide what to do. I trust my uro completely and I know that the trial is not a major undertaking, but I'd really like to hear your thoughts. This disease has taken so much from me as it has us all.
Best wishes,
Jean

[DebbieB]

Hi Jean:
As you know that everyone on this board that has the InterStim Implant have NOT been help with PAIN!!
The InterStim device is mostly for frequency and urgency..
There was a lady named JudyK that posted about a new Medtronic device call Synergy EZ that she had done for pain, I do not know much about this procedure at all..
Check out web site at www.medtronic.com or you can call them at 1-800-664-5111 ext. 3000.
I am sure they can send you a booklet all about this procedure or maybe your doctor could find out for you!!
I hope this is some help to you..
Good luck on what you decide to do Jean and I do hope some other ladies are looking at your post and give you some advice..
I have had the InterStim Implant now for almost two years and I am blessed each and everyday with it to, as I was unable to pee on my own and I am now able with this wonderful procedure..

Hugs Debbie

[beth_ingram]

Jean, I had the Interstim trial in mid-December with mixed results. I'm now through my second week of the "staged" trial. That is the same thing, except the wire is sewed into place (under general anesthetic). I had great results for 7 days, then WHAM! The pain has returned. I did have frequency, but pain was my reason for trying the Interstim. My uro (who is also great) said there were mixed results with the surgery, but that I should consider trying it. I'm scheduled to have the generator surgically implanted to complete the procedure on the 13th, but may delay it. I am really going to have to weigh all the pros and cons before completing the surgery. I'm somewhat discouraged and trying not to be depressed, but it is frustrating. Let us hear what you decide to do.

[Ange]

Hi Jean,
I am Ange and have been "talking" to the above mentioned and helpful JudyK from TX. I have IC really severely and pain is horrific. I am on 24/7 major meds for over 2yrs now. I also have urgency and frequency and lately I am retaining fluids. I am going for kidney tests this week now for the swelling. I have been thru 2 interstim trials and they were not easy at all for me. Also I got no releif. My pain mgt dr contacted Dr Alo in Houston, TX for me and they do an implant for pain and I was told they look for a 50-75% benefit re the pain. I also was told some benefit re urgeency and freq. was seen too. I think kind of the opposite benefits of the interstim. Also,there is another company making the implant as well as medtronics. I am scheduled for an appt and trial impnat in TX (I live in NJ) on March 6 and 7th. If you want, I will email you my experience if you let me know your email address. Acupuncture is very helpful in temporarily reducing my pain once a week. You might try that in adition to a med plan. Hope this helps you. Ange

[Maureen]

Jean, I have had the implant since August and it has not helped with pain. I would look into Ange suggestions.


Ange: Do you know where the accupunture needs are placed that are helping you exactly. My doctor would like some suggestions as we did well with accuptunture for about 3 months and then it stopped helping.
Maureen

[rhonda]

Is your doc maybe geing the interstim mixed up with a spinal stimulator? They are different the spinal stimulator is for pain where the interstim is for frequency/urgency/retention. If this isn't your problem I wouldn't go through this. But that's my humble opinion.

[MaryFitz]

Jean,

I'm sorry to say but the InterStim device does not help with pain, nor does it claim to. I had my surgery Feb., 2000. It's been great for my frequency and urgency, which at the time were my primary symptoms.

I beleive that there is an implantable device that is designed for pain control. I'm sorry, but I can't recall the name of it.

Mary

[Ange]

Hi Maureen,

I cant tell you the exact names of the locatons the dr uses for my acupuncture. He actually is so good that for example we normally do it one set up that is the best overall. But if I come in and he asks me how I am feeling and I tell him I have horrible IC back pain and want to treat that more than my pelvic pain, he will put the needles in on my back rather than the usual on my front. He also can adjust where he uses these electrical boxes that produce an "electrical stimulation" and that also changes. He has been giving me CONSTANT excellent results for over a year now. I go every MOnday and have only missed for one day due to pain and no one around to drive me. He is 30miles or so from me but worth the drive. I get temporary releif but also some overall slight help. If I cant go for a few weeks like when I had the interstim trials (2) done, I couldnt get acupunture. I was worse overall then. Where do you live? I live in NJ and my dr called TX to talk to the dr there for me. Maybe your dr could talk to my dr for help with the acupuncture!? I will see him tomorrow and ask him if he will try to help. Try to reply here or email me at [email protected] and I will tell you more personally, the places the needles go. I tell my drs they dont need to worry about me becoming addicted to the narcotics, its the releif,, however temporary, the acupuncture gives me that is "addictive". Also, my dr says the treatments help my body to release endorphins? which make me feel better. There are 2 types of electrical boxes he uses and the one that gives a tapping feeling is the best for me. The other is more of a humming or buzzing feeling and works in a different way. I dont know the technical aspects of it but I always try to get the most benefit by having the dr put the impulse on the highest setting I can take because my body gets used to it (its normal) after a while and the best reults are from the higher pulsing. I hope this helps! ((HUGS and good thoughts)) Ange

[JudyK]

Jean, I am JudyK from Tx. I had a Medtronic Spinal Cord Stimulator, Synergy-EZ implanted in Sept. 2000. Dr. Kenneth Alo from Houston is my doctor. His phone # is 281-537-5355.
I am very pleased with my unit. It has taken care of the really bad pain that I had. Of course, you know there is all kind of pain with IC, but that really bad stuff if taken care of with this unit. It has not helped with the urgency and frequency very much, but as bad as my IC is, Dr. Alo said it may taken a really long time or maybe not at all. But I can live with that. It's the pain that was giving me soooooooo much trouble. The 'little paddles' with this unit were placed on top of the nerve sac in the sacral nerve area. They have four metal contacts on them next to the nerve sac and they are insulated on top so all of the energy from them goes to the nerve area and is not lost into the body. Dr. Alo does a different procedure than what is done for the interstim. His procedure is stitched in place so it does not move around. I am very pleased with this device. I had an interstim implanted in Sept. 1998, but Dr.Alo removed it at the time of the surgery
The interstim never worked past a month after it was implanted. It moved and they could not get it set. A different doctor put the interstim in. I much prefer Dr. Alo. If I can help you any more, please feel free to email me at: [email protected]
I hope I have been of some help. Take care JudyK

[Teri]

Jean, I'd sure like to know who/where your dr is getting his info from????????? If he even tried to push it thru to your insurance for pain, insurance would surely deny it. I've had mine now for about 1 1/2 years and it has done nothing for pain.......and I MEAN NOTHING!!!!!!! It angers me that a dr would even suggest to you that this device could or would help manage your pain......I'm soooooo glad that you are asking questions!
tons of hugs
teri

[Sandy]

Hi I had the interstim planted June of last year and it help with bloating, some of the pain but not the pain in a flare. I stillhave urg/frq and still cannot get may bladder to empty Sometimes I still have to cath to get about 100ml residual out Mine really varies with the situation of my mental state (nerves) I find and if I smoke that seems to trigger it and alot of it ssems to be in the top of the urethra again. But it did help with 75% of the pain I was feeling
Sandy

[hawgfan]

Hi, I had the interstem trial and after a few days it began to help with my frequency and my pain. I had heard from lots of people that it would not help with pain. It did with mine. I really think it depends on the person. I had mine in for a week and the hardest thing for me was having so many adjustments. The last time my uro adjusted it he pulled it out to far then had to pull it out completely. I am having another trial interstem put in next Tuesday. If it helps again them my uro will put the permanent one in. Since I had the trial one taken out my pain has returned with a vengence. I live on pain meds 24/7. I hope that you will find something that helps with your pain and frequency.
hugs,
Mary

[Sandy]

Hi Teri

Are you still finding that you have to cath to empty your bladder to that satisfied feeling that you have finished peeing. I seem to more so now ofter this last adjustment. Yet on Sunday I had such a good day it shocked the hell out of me. Was like I never even had a problem and then it returnd. I took a macrabid anti biotic and some of the urg/frg has settle down. Did you find that u got infections easily after self cathing? Or I wonder if I nedd to go and have another tune up. God I was just there two weeks ago.
Debbie,,,,,,,not a word......lol

Sandy

[DebbieB]

Sandy...................LOL..........

[JudyK]

Jean, I had a spinal cord stimulator implanted in Sept. 2000, by Dr. Alo, pain specialist, in Houston. The unit that I have
Synergy E-Z is so new that it has not been approved by FDA yet and when we were in MN last Oct. at the IC National Conference, the rep in the Medtronic Exhibit did not even know about it. Dr. Alo is the best in the business, I think, and he was able to get the lastest thing out. I have not found it to help with the urgency and frequency yet but I can tell you that it stopped the relentless pain. Give Dr. Alo's office a call Phone: 281-537-5355. Get some info from them. Dr.Alo told me to start the PFD Therapy because it is a must. It will improve everything along with the spinal cord stimulator. I have not been able to start it because my insurance said it would not do anything for my problem. What do they know. I am still working on getting that started. Give it a try. Dr. Alo is a pain specialist and this is his speciality.
He even goes to Italy several times a year to teach this procedure. It is different from the procedure of uros. Hope you find relief. JudyK