Please Help

[Karen401]

Hello, I am new at this and very confused. I do not have ic, my sister does. Tomorrow she has an appointment to talk about a spinal cord stimulator. She saw the video, and spoke to some people who had many negative things to say. She called the doc and told him she changed her mind, now he wants to see her tomrrow to convince her to do it is what it seems. She is in pain 24/7 and no pain meds are helping. The doc makes it sound like this is her last option. She is very depressed over this and I was hoping someone out there can give us some input about this stimulator, negative or positive. With all the things you must avoid, and no lifting and raising your arms and stuff, how can you live a normal life, are these rules forever? Is it worth it? Is there another alternative? Does the stimulator really work for this chronic pain? Sorry I sound so stupid, but my heart is aching for my sister and all you people going through this. It seems there is not too much known in the medical field about this disease, as I know my sister is having to go from doc to doc with no relief in sight. She does not want to live like this, and that is a scary situation to be in. Thanks to anyone who can help us out. Take care, and God bless you and help you all through this.

[DanaG]

I just want to make sure that the stimulator you are talking about is Interstim. If so, it is not for the spinal cord, but the sacral nerve. Also, unfortunately, this stimulator does not help with pain (or at least that's not what it's made for and I haven't heard anyone on here say it has helped with it). If pain is her main concern, I do not think that this is the best option for her. How many doctors has she seen? What has she tried so far? There are many treatment options that should be explored first before you resort to surgery. Please tell us what meds/treatments she has tried and what her symptoms are beside pain and perhaps we can give some suggestions.
Your sister is in our thoughts...

Dana

[Karen401]

She has been on vicodin, elmiron, elavil, and many other meds. Now on oxycotin and oxycodone, with still no relief. All I know is this thing is by med tronics and it is called a scs. I will try to find out more. Please keep in contact. I know I am asking for a lot of info by morning, sorry about that.
Originally posted by DanaG:
I just want to make sure that the stimulator you are talking about is Interstim. If so, it is not for the spinal cord, but the sacral nerve. Also, unfortunately, this stimulator does not help with pain (or at least that's not what it's made for and I haven't heard anyone on here say it has helped with it). If pain is her main concern, I do not think that this is the best option for her. How many doctors has she seen? What has she tried so far? There are many treatment options that should be explored first before you resort to surgery. Please tell us what meds/treatments she has tried and what her symptoms are beside pain and perhaps we can give some suggestions.
Your sister is in our thoughts...

Dana

[Karen401]

Dana, This scs does not use any meds, it is some sort of electrical stimulation, like a tingling. She would have a temporary one like a pager type thing for one week, then they would put in the other regular one inside the body. They say no lifting or moving too much as it will dislodge the wires. Does this help any? Originally posted by Karen401:
She has been on vicodin, elmiron, elavil, and many other meds. Now on oxycotin and oxycodone, with still no relief. All I know is this thing is by med tronics and it is called a scs. I will try to find out more. Please keep in contact. I know I am asking for a lot of info by morning, sorry about that.

[DanaG]

Yes, that is the Interstim stimulator. This is connected to the sacral nerve and not the spinal cord - just so you know. I had 2 trials, the first was unsuccesful and the second worked. I am getting the permanent implant in less than 2 weeks. Thing is, I don't suffer from pain - only frequency and urgency - which this stimulator was made to help with. It cannot hurt your sister to go and talk to the doctor about the stimulator, but I highly suggest she talk to someone else before she gets the trial. It's not like the trial can do any damage or anything, but I hate to see your sister go through the procedure (which in my opinion is not THAT bad, but why go through it if it's not necessary) if it's not the most logical step to take. My only link to others regarding Interstim is on this board. I have not heard anyone use this for pain or say that it helped with the pain if they had it. Is the appointment tomorrow just a consultation? If so, just hear what the doctor has to say and see what others on this board think. I am not a doctor and don't want to tell you what to do. I just hate to see her do this if it is not necessary.

Good luck and e-mail with any more questions!

Dana

[DanaG]

PS: The no bedning and no heavy lifting is only while you have the trial in (about 4-5days). As soon as it's taken out, you're free to bend and lift again. These same rules apply after the surgery as well, but that is only because you just had surgery and don't want to strain yourself. As soon as you heal, you'll be able to bend and lift as well. It will not be that way the rest of your life.

Dana

[Ruth N]

I also have the interstim and it is wonderful for frequency and urgency but it does not help with pain. There is nothing to be afraid of about the interstim but I don't think it is a good option for pain. Medtronics makes other stimulators and pain med pumps I believe. Your sister needs to know which device the doctor is interested in using and then to learn more about it. Once she knows the name of the device she should go to the medtronics website www.medtronics.com (http://www.medtronics.com) to read more about it. I wish her luck and relief from her pain.

[DebbieB]

Hi Karen:
I think Dana and Ruth gave you some good advice...thanks ladies!!!
I also have the InterStim now since April 20,1999, and am doing well with it,as my bladder muscle just die overnight and I could not pee on my own, I do NOT have IC at all , I have Pelvic floor dysfunction PFD..
I am able now to pee with the InterStim Implant, and it is working wonderful for me..
I alway tell people that the InterStim should be your last resort.
I would suggest that your sister go and listen to what the doctor has to say and then ask the doctor about other treatments such as bladder instillation and doing a Urodynamics testing , this is a good test to see if she would need the InterStim !!
Tell her read all she can about this device before going as she will have some knowledge of this device ok.
Keep us posted on how she is doing, and I wish her all the best in whatever she decide to do Karen..

Hugs http://www.ic-network.com/ubb/biggrin.gifebbie

[Karen401]

Thanks so much for all the help. I just spoke to my sister. The device is Neurostimulator Implant Surgery. They told her it is for the pain. She can live with the frequency for now, but not this much pain. She is taking 2 oxycotin every 12 hrs, 2 oxycodone every 3 to 4 hours, elmiron 3 times a day, elavil at night, neurotin 3 times a day, celexa once a day, hydroxycine with elmiron for itching. She has been diagnosed with hunners ulcers, has blood in her urine at times, burning in the vaginal area, back pain, chronic pelvic pain and pressure. (she describes it as constant labor pains that do not go away) Is this neurostimulator implant surgery the same as the interstim the people on this network are saying did not help with their pain? She asked the doctor if his wife was in her shoes would he be putting this thing in her and the doctor replied "I can't answer that question." She is so tired of go from doc to doc. She has been to gynecologis, family medical doctor, 3urologist, and is totally at her wits end. She said the doc actually seemed mad that she changed her mind to let them do this trial on Wednesday and told her to come in on Monday to talk about it before she cancels out on it. She is not an outspoken person, and it would not take much for her to do whatever the doctor tells her to do. She is afraid if she does not, she will be without pain meds and left stranded. She travels 1 1/2 hrs. to the doctor now as there is none in her area. Thank you all so very much, I am doing my best to help her, but I know nothing about any of this. You are all angels.
Originally posted by Karen401:

Dana, This scs does not use any meds, it is some sort of electrical stimulation, like a tingling. She would have a temporary one like a pager type thing for one week, then they would put in the other regular one inside the body. They say no lifting or moving too much as it will dislodge the wires. Does this help any?

[DanaG]

Karen-

May I ask where you are? I understand that your sister wants a solution and wants it fast, but she should not be in any rush to do this trial. I have not heard one person say this helps with pain and the literature doesn't state help with pain either. I'd hate her to go through with it and then be disappointed with the results. If you go to www.medtronic.com, (http://www.medtronic.com) you and/or she can read about the device to learn more. Also, you can contact the ICA for a list of doctors in your area. I went to 6 or 7 urologists before I found the one I am with now. I know how frustrating it can be, especially if you are in pain, but it is worth it to find a doctor who cares and is patient with you. Let us know where you are and maybe someone knows of a doctor near you.

Keep us posted.

Dana

(I fixed the link fot the Medtronics website had a "," in there which caused it not to work- Diane - ICNAsstMgr.)

[This message has been edited by ICNAsstMgrDiane (edited 12-11-2000).]

[Karen401]

My sister is from Mifflintown, PA
She goes to Geisinger Medical Center.
Am I allowed to mention a doctors name?

Originally posted by DanaG:
Karen-

May I ask where you are? I understand that your sister wants a solution and wants it fast, but she should not be in any rush to do this trial. I have not heard one person say this helps with pain and the literature doesn't state help with pain either. I'd hate her to go through with it and then be disappointed with the results. If you go to www.medtronic.com, (http://www.medtronic.com,) you and/or she can read about the device to learn more. Also, you can contact the ICA for a list of doctors in your area. I went to 6 or 7 urologists before I found the one I am with now. I know how frustrating it can be, especially if you are in pain, but it is worth it to find a doctor who cares and is patient with you. Let us know where you are and maybe someone knows of a doctor near you.

Keep us posted.

Dana

[DanaG]

Yes, you can mention a doctor's name. What is the closest major city to the town she is in? I don't know how far you are from Philadelphia, but one of the best IC doctors is located there - Kristene Whitmore.

Is she too far from there? If so, please call the ICA and see who they may have listed closer to her area.

Let us know how the appointment goes.

Dana

[Ruthie]

Karen,

I have had IC for 20 years, it took ten to diagnose. Have any urologists tried DMSO, or DMSO cocktails on her. I have been diagnosed by biopsy in 1991 with hunners ulcers, and mast cells. Just had the worst Flare up in 3 years, the DMSO installations are working very well again, I go weekly.

There are many books about IC, Check with the library there is a book written by Vicki Ratner, I am sorry I do not remember the name, she is a doctor that also has suffered with this terrible disease. I have not tried interstim. Good luck and lots of love and prayers to your sister, this disease really can be devistating, but if you find the right combination of treatments you can get it to go in remission at least 50% of the time.

------------------
Ruthie : )

[ICNDonna]

There is an excellent book, available from this site, written by Dr. Robert Moldwin --- "The Interstitial Cystitis Survival Guide." It's written for IC patients and is written in language that's understandable without a medical degree. You can find information if you scroll to the top of this page and click on "shop & subscribe." I've had IC for 25 years and it's the best book I've seen.

I haven't considered the interstim because other treatments work well for me. I do know that they do "trials" --- which will show how much it will help. If the trial helps significantly, then she can consider the real thing.

Donna

[Karen401]

Thanks so much to all of you for your help. I did go to the medtronics site, as you recommended. They also say this is used for urgency, frequency, and retention. They mention other uses for pain, fractures from osteoperosis, cancer, pinched nerves, but nothing about the pain of ic. Philadelphia is really far from where she lives. She is going to Danville, Geisinger Medical Center, to see a Dr.Han, who is in the pain center, her urologist sent her there cause he could not do anything else for her. She lives relatively close to State College, PA. Well we will see what happens today. I will keep you posted. Thanks again to a real bunch of sweet people.

Originally posted by ICNDonna:
There is an excellent book, available from this site, written by Dr. Robert Moldwin --- "The Interstitial Cystitis Survival Guide." It's written for IC patients and is written in language that's understandable without a medical degree. You can find information if you scroll to the top of this page and click on "shop & subscribe." I've had IC for 25 years and it's the best book I've seen.

I haven't considered the interstim because other treatments work well for me. I do know that they do "trials" --- which will show how much it will help. If the trial helps significantly, then she can consider the real thing.

Donna

[ICNAsstMgrDiane]

Karen,

First of all I would like to thank you for taking the time and showing the concern that you have for your sister. For this she should be thankful and you surely have earned your wings.

I would like to point a few things out. First of all is her doctor ont he list for doctors that were trained to do the interstim. http://www.medtronic.com/neuro/interstim/fr_locate.html

Also, the interstim is not applicable for pain. Please read the following. http://www.medtronic.com/neuro/interstim/fr_pat.html

What is InterStim Therapy?

This therapy is a medical treatment for urinary urge incontinence, nonobstructive urinary
retention and significant symptoms of urgency-frequency in people who have failed or
could not tolerate more conservative therapies. The system helps control these urinary
problems by sending electrical impulses to the sacral nerves that control your bladder, bowel and
pelvic organs.

What do nerves have to do with urination?

Nerves carry information to and from the brain. The sacral nerves influence the bladder
and muscles that relate to urination. When the communication system between the sacral
nerves and the brain is not working, a person can have bladder control problems.

What are the benefits of InterStim Therapy?

InterStim Therapy can eliminate or greatly reduce urinary symptoms for many people who
suffer from urinary urge incontinence, significant symptoms of urgency-frequency, or
nonobstructive urinary retention. It is completely reversible and can be discontinued at
any time with no permanent damage to the nerves. In clinical studies, the therapy successfully
treated certain bladder control problems in patients who had failed or could not tolerate
other treatments.

[This message has been edited by ICNAsstMgrDiane (edited 12-11-2000).]

[Ruth N]

I still think you need to learn the name of this device as Medtronics does make other implantable devices. Either her doctor is not talking about the interstim, but rather another device, or he is misguided. Interstim is not for pain. Please check the medtronic web site. You will find info on all their products at www.medtronics.com. (http://www.medtronics.com.)
I live in Allentown, PA and my interstim doc ( a urogyn) is in Bethlehem.
I also go to see Dr. Moldwin every 6 months or so. It is worth the trip because he gives me and my local uro/gyn advice on what treatments to try and then my local doc implements his suggestions. I have the best of both worlds- an IC expert to consult with (and I can call him in between visits) and a wonderful local doctor to do whatever needs doing close to home.Maybe she should consider traveling to see an expert (I did not like Dr. Whitmore though and her recomendations are harder to follow when you don't live near her. But that is just my opinion. Others think highly of her. I hope all this helps.
I live in

[Ruth N]

Okay, I couldn't stnad it anymore. I went on the Medtronic site. They also make something called APT neurostimulators which are for pain and are implanted at the spinal cord. The risk profile is slightly different than from the interstim- with the other risks seeming to be related to placement at the spinal cord. Once again I urge your sister to find out which implantable system the doctor is talking about and then to learn as much as possible about that device and people's experiences with it. Good Luck.

[Catamia]

Karen, It was highly pressed on me that the InterStim was able to help with my pain. In fact that was one of the main reasons why i had it put in. The trips to the rest room went way down. Did you say that your sister has recieved DMSO treatments? That has helped me more than the InterStim. My Old doctor only tried 3 DMSO treatments before he told me that they were not working. With these kind of treatments you do not stop with 3 treatments. Clearly,I now know that it takes more time and treatments to know if they will work. I did not know this imformation at the time,it was so new. The next thing i knew, the InterStim was being offered to me. I was told by my old doctor that i needed to start think about taking out my bladder. My blabder was holding up to 700-800 cc fluid,under Hydro. My new doctor has told me that you only consider taking out the bladder if the bladder can only hold 200-300 cc of fluid under Hydro. I believed and trusted my old doctor. I was so upset that i just wanted the pain to stop. I would do anything, even take out my bladder. I went into his office and told him,"Just take out my Bladder". When he gave me the choice of the interstim or taking out my bladder,There was not choice. Having it put in was not right thing for me to do. When the unit started giving me trouble I was put back on DMSO treatments. At this point I found a new doctor. It was then that i was also given meds for IC. It was clear that the doctor I had been going to tried the last resort first. If i had recieved DMSO treatments first, and IC Med's the InterStim would never been something i would have done. About 5 weeks ago i had it taken out. I turned it of 4 monts before i had it removed. I have to say that i am happy that it is out. I had alot of problems with it. I do know that for some Lady's it is the best thing. It sad that the doctor i was seeing did not even think about what i would have to indure. Was it so hard for him to try the simple things first. I have to forgive him. It hurts. I really thought that he liked me.
To him I was just a house payment. That is how I feel.
Catamis

------------------
Catamia

[S.M.]

There is very little researched, scientific data on the ANS/Neurostim for IC patients. (Unlike the thousands of interstims)
We are all different, and just as medications do us each differently, procedures will to. I am thrilled for those of us who have been helped by these devices, but my heart aches for those of us who not only weren't helped, but were hurt.
There are more risks with the Neuromed device. Be patiently cautious in making your decision.
SFN