Sleep quality back to pre-Interstim

[rjyoon]

Suddenly, my sleep quality is back to pre-Interstim for the last few nights. I don't think I've changed anything. Is this what people mean when they say it quits working & reprogramming is needed? The stimulation still feels the same. How long do you wait to decide to reprogram? I'm wondering if the leads moved, but I would expect it to feel different if that were the case. I fell asleep in front of my computer at work yesterday. No one noticed, but this isn't good.

[dyno]

I don't know the answer to this but I am sure someone else will come along that does. You could also check with your Dr. since this is a change in what it had been doing.

I hope you can get it figured out.:)

[rjyoon]

I've thought of checking with my doctor, but to be blunt, this is not what he's good at. He's all excited about performing surgery. Now that this the surgery is over, I don't get the feeling that he knows much about the reprogramming -- we tried a lot of settings & just stuck with what we started with when I went in for the first time post-op. He wants to reprogram until I get a certain sensation, but no setting gets the sensation, so then it's a guessing game. The sensation was perfect in the OR, but never since then.

[rjyoon]

I did nothing different, & I had a good night last night. Maybe it's just going to be random. If I have only half good nights, it will still be better than I was before, so I guess that's a good thing. It makes for a real roller-coaster emtionally, though, and I don't much care for that.

[Dixiefireball]

I'm sorry i don't know much about the stim but glad you did get a good night sleep i pray it continues for you.
sending you gentle hugs and lots of prayers.
Rhonda:kiss:

[rachelm]

Rjoon,

My dr., nurse, and rep. explained that this isn't a cure and I will still have flares that get me down. I know what you mean about the rollercoaster. It's taking me longer after the stage trial to see results than I had after the first trial (old kind-no incisions). I feel the stim in the right place too but I'm not completely consistent at emptying my bladder all the way. It has been better the last few days since he reprogrammed me Mon. I still self-cath once a day before bed to make sure that I will have a good night. I've been sleeping through most of the night but I do still have 150 cc retentioned that I cathed out last night. It's easier for me to get the stream started compared to the first day with it. In the first trial It only took 30 min. untill I was able to go on my own. This time it's taken all week and it's still not as good as it was originally. My belief is that this one required incisions which has left the body in a state that's tryiing to heal thus taking longer for it to "listen" to the stimulator. We have only tried a few settings so I know there are many more that we can try.

I would talk to your dr. about your concerns that he may not be as available for reprograms. Perhaps he can send you to a dr. who may be able to keep up with your needs. I know I couldn't agree to this procedure unless I had assurance from my drl and his staff that they would be there to help me maintain the device. I felt pretty good about them because I go in to see them 3-5 days a week for bladder instills.

I wish you restfull sleep tonight! Let us know how your doing.

[littlebear]

Hi Ryjoon, How are you doing? I hope your sleep has been better during the last few nights? Also, I hope that your Dr. has come up with a plan to help you get more deep, restorative sleep as well. Sending you all my best wishes, little bear

[littlebear]

Hi Rachel,

I thought I'd follow up on your reply to Ryjoon too! I'm so sorry to hear that you're on a bit of a rollercoaster right now. I think that sometimes it's just a normal part of the process for some folks who get the interstim. I'm so glad that you have a Dr. that you trust (I took a long time choosing mine, and I'm really glad I did)--I think that really helps with keeping an eye on the long term goal (finding the best setting for your body's particular needs).

I hope that everything else in your very busy life is going really well and that you and your finacee are looking forward to your big day!

Best wishes, little bear

[rjyoon]

Last night wasn't a good night, so I think that's one good night out of the last six. I think I had at least five good nights in a row before that & I was getting really excited about the improvement, so I'm annoyed that I'm in a different pattern now. Today, I've tried increasing the "volume" on the Interstim to see what will happen. I know I'll end up talking with the doctor eventually, but he really doesn't get the whole sleep thing & didn't know what to do before, so I don't think his answers will be any better now. I could ask for a reprogramming & he'd do it, but the last time he tried a whole bunch of different settings & just ended up leaving it on the same setting, so I wondered why I bothered.

I think he'd just want me to play with the intensity, which I'm doing. There is one other doctor in the area that I could go to, but I don't know what kind of politics I'd get into if I started doing that. Also, the doctor I'm going to does his own reprogrammings, and the other doctor has the rep do them.

I never really had flares, my symptoms were pretty constant, so I don't think that's the explanation. I'd just like to be able to get some decent sleep & concentrate on things like my wedding in five weeks. I still have a lot of work to do.

Thanks for listening to me. It really helps.

[rachelm]

Little Bear thanks for thinking of me. Today was the best day I've had so far. I've been able to at least start a strong stream for 2 days in a row. This morning I was nauceus so I was afraid to take my morphine because I had plans and couldn't take the phenergen which knocks me out. So I went on with my mom and the florist to the wholealer to pick out the types of flowers for my wedding. I didn't take anything for pain until 1:00 and then I only took 1 morphine. I've been taking 2 every 4 hours so I cut drastically down. I was gone from 11 to 4 today and while I'm tired and a little sore still my pelvc pain is much much better. I'm glad I have a good report for my dr. Even thoough none of my loved ones nor my dr. ever give me the impression that their tired of trying yet another thing I still feel like I'm disapointing so many people if a treatment doesn't work. I really never was scared that this wouldn't work eventually but I can't afford the time to push back the final implant surgery until we get these darn settinhgs right. My dr. positively will not go to stage 2 until I experience relief because he says it's harder to move the wires after the implant is inserted.

I'm 9 weeks away from my wedding so I can relate to you Ryjoon. The last leg of the planning is uppon us and I was worried I wouldn't be up to it. I was able to find an alternate seamstress that can do my dress in 2 weeks so we have time for a second fitting before my bridal photos the first week of June. Turns out she was cheeper and better than the first one that I was going to use. So with the scheduling of all that and no the flowers selected I feel like I'm on the road to having things ready in time for the big day.

Ryjoon do you have someone helping you? I know this is a really tough time to not be getting the results that you hoped for. I would be persistent with your dr. until he gets the right combination. My dr. explained that it often takes a few reprogramings a week to get it right. I wish you the best! I'm certaininly praying for you.

Rachel

[codyryonwoodward]

ryjoon I know exactly where you are coming from. I have my interstim since 2001. I am not knocking the thing but I am having concerns with mine right now also. For one I don't think the thing is working like it did when I first got it. Also now I am waiting on SSD and my cobra insurance ran out so I have zero insurance and my doctor who did the stim really doesn't seen to care. I am like you he was all for inserting it but doesn't care about the follow ups. And in my area he his the one and only one who does the surgery. I am currently going to the LSUS med center's urology which is a training hospital for soon to be dr. They are great but not expericenced in the stim.

I do have to have reprogramming done alot in fact I had one today but I have to pay $50.00 each time so I end up suffering until I can get in. Usually it will work for a couple days but then I am right back to where I started.

Best of luck I for sure know where you are coming from....

Patricia:angel:

[rjyoon]

I had a good night, so I'm hoping that the change in the intensity settings did the trick. I'll have to wait a few days to see if it "sticks". Rachelm, I'm not sure what you mean by someone helping me, but no one is helping me with my IC, if that's what you mean. I vent to my fiance, and he's great about listening, but he doesn't know that much about IC yet to really be helping. If I can't get the Interstim to help with my adjustments to the intensity, I'll go back for a reprogramming. They're $250 each, and I only have a $15 co-pay, but I've had literally dozens of doctor's appointments around my Interstim implant & I'm tired of the cost, the time off of work, and the overall drain on me.

We're going to print off the wedding invitations this weekend, address them, make maps to put inside, etc. My folks unexpectedly decided to help out significantly with the wedding (giving us money), so I was really surprised. They paid for my first one, so I didn't expect anything the second time around.

[rachelm]

Ryjoon,

I'm glad you had a good night!:thumbsup: Let's pray that it lasts for a while. I meant did you have anyone helping you with the wedding plans. I've been fortunate to have a very organized fiance who's kept me on track for time tables and then my mom and friends are helping with the details like invitations etc. I know what you mean about your fiance supporting you but they never really quite understand what it is that your going through.

Brian and my parents have been extremely supportive of whatever treatment options I've decided to do. Brian is a reporter so it is his nature to research anything he's got questions about so he knows some about the disease. It helped my family to see the pictures of my bladder from my hydro last year. It was kind of like an Ahh Hah for them, now they understood why I was in so much pain. This year when my dr. looked at the sacral nerve during the first trial he explained to my family that there was a tremendous amount of pain transmitting on that nerve. He told them that he thought even though oiur goal at the time was to have a temp. trial to get through the flare, that he usually has to put in permanent ones when he sees nerves that bad off. They were asked not to tell me though, so I would be able to come to that conclusion on my own. I learned about it on the way to the hospital to get the permanent implant stage 1.

Do you have a support group in your area? I have atteded one on and off for a while and it's been helpful to meet others in person that deal with this disease. Often I'm not well enough to go to the meetings but I can contact members on the phone for support.

I'm glad that your parents are contributing financially. I'm sure that's going to help you some especially with all the copays that you've been having to pay. People think that it won't be bad because we have insurance but when I was going daily for bladder washes it was $100 a week at $20/day.

Good luck in the last month of planning for your wedding! I'm excited for you and hopefully you'll get some relief soon so you can enjoy this time.

Rachel

[littlebear]

Hi Ryjoon and Rachel,

Ryjoon I'm so glad to hear that you had another good night.

I agree with you both about reprogramming etc. It really is an art trying to balance your own common sense, your own sense of your body, your Dr.s and rep's opinions, and your checkbook too!

I'm so glad that (both!) your wedding plans are going smoothly (not that this means you're not still juggling a million things . . . ). Best of luck with *everything* during the next few weeks!

Best wishes to you both, little bear

[rachelm]

Thanks Littlebear! You've been so supportive as I've been going through this process. I appreciate your encouraging words. I will go for stage 2 implant surgery this coming thursday. My dr. gave me an additional box to hook up to the other side so I can see if bilateral stimulation helps the spasms/pain in my hips any more than just one side at a time. Basically its up to me whether I have one or two implants so I'm trying to keep very good data becuase I don't have much time. I'm leaning towards going with one unless 2 makes a drastic difference. I met another one of his patients that has 2 and she said the 2nd one didn't help any more than 1. Have you heard of any other dr. using them bilaterally?

Rachel

[Zipper]

Ryjoon,

With the Interstim you should definitely play with the remote. Turn it up and down and sit with it for awhile to see if things improve. Sometimes it could be turned up too high.

It does sound like you need a reprogramming though.

Hey has anyone heard of the ANS unit? It's similar to Interstim, but for pain.

[rachelm]

Yes. I've talked to my pain dr. about it. Basically while the interstim can only stimulate one lead but the ANS and synergy and a few others for pain stimulate a larger area covering most of the pelvic floor. They implant it in the epidural space of the spinal cord and stitch it to the spine. With the interstim it is only touching a nerve that stems out of the spine. It is much more invasive and has more risks but many people have found success with it. I decided even though pain was my biggest complaint that I would try the interstim because my pain is mainly caused by the constant spasms in my bladder and pelvic region.

After having a very successful trial and tanking badly after the wires were removed I decided I did want the permanent implant after all. So far I've had my stage 2 for 3 days and the only pain I'm having is from the incision. My pelvic pain is almost completely gone! The reason that it cannot be marketed for pain is because it doesn't stimulate directly on the spinal cord and it doesn't have the amount of coverage as the others for pain.

I saw the Oprah the other day where a patient with severe turets syndrom had deep brain stimulation and was completly normal with no shaking after his stimualtor was turned on. Medtronic has a different name for it but it is exactly the same thing as the interstim and the pacemaker. They even had him turn off his unit with the remote just like mine. It was amazing to see the drastic difference when he went from not being able to hold a cup or feed himself because of the shaking to a perfectly normal stage. It was a great illustration of what it does to our bladders that are constantly spasming. I've thought about writing to request the tape because it would help some people understand why this is working so well for me. They can't see the bladder so it's hard to understand. You can see a person's outward disability with Turets and Parkinsons.

The ANS and Synergy work best for neuropathic pain. If viscereal pain (pain in the organs) has reached the spinal cord over long periods of unrelieved pain than sometimes it turns into neuropathic pain. The interstim treats the bladder nerves directly whereas the Ans is for the pain in the nervous system. Pain such as Sympothetic Regional Syndrom pain respond well to the ANS but strictly visceral pain doesn't always improve with it. I know that my pain has been so constant that my dr. could actually see the enlarged sacral nerve which is a sign that the chronic pain had been tremendous. This constant pain caused me to form permanent paths in my spinal cord thus making it now neruopatic pain. I hope that I continue to have the benefits of pain reduction from my InterStim. If not then I may consider discussing the ANS or Synergy with my pain dr. For now though I love my new box and I'm finally able to start cutting down my pain meds. after I heal from the incision. You can go to the medtronic site to learn more about the Synergy which is their version of ANS. I have found info on ANS through links on pain web sites as well. It will give you more detailed info. about the types of pain that it successfully treats.

Take Care!

Rachel

[Zipper]

Thank you so much for all that information. I too had the Interstim and it did work very well for me. Although much of the pain was still there--not as intense though. I had it permanently implanted for 2 months until it got infected. I had to have emergency surgery to have it removed. I'm planning on having it put back in in a month, but I believe much of my problem is more a neuropathic type pain problem. So, I'm looking into other options.

Thanks so much. Your info. really helped!

Decnie

[rachelm]

It sounds like you may be a great candidate for the spinal stimulators. Do you have a good neurologist or pain specialist. My urologist said that you definitely would want a very experienced neurologist to do that type of stimulation because your dealing with the spinal cord.

What do you think caused your infection? I'm getting married in June and I just can't afford any more complications! Are you feeling better now?

Rachel