scheduled trial

[rachelm]

I am scheduled for a trial next Tu. but my uro said he may have an opening this Thurs. I have done my research for the past year and have decided that it is at least worth a try. I am self-cathing every 2 hours and sometimes more often yet I'm still feeling like I need to pee. I also have a lot of pelvic pain and while I know that it is not for the pain I hope that somehow in releiving the spasms it helps the pelvic pain too.

I'm wanting to know some practical things about coming home after the stim. Do you have to stay away from microwaves? I've also got a question about ultra sounds. I know that with the interstim you cannot have an MRI but what other types of radiation do you have to stay away from. I hope to get pregnant in a few years and would of course want a sonagram so I'm just wondering about it. I will see my dr. again tomorrow to go over all the details. I am taking my fiance with me so he can help me remember everything. While we are not planning to move past the trial in the long run I may decide to do it. My dr. thinks that a few weeks with a trial will help get me through this flare and retention. Also what is the difference between a trial and a stage trial? Is a stage trial where they implant the wires under the skin? I'm not completely clear on the difference. I know that Brat and Jess are experienced with the interstim and I've learned a lot from your posts and pm's. How long did it take your dr. to do the trial? Did your leads move during the trial? What happens if they do move during the trial? It would be helpful to get these few things cleared up. Thanks

Rachel

[peiti]

Hi, Rachel

InterStim has helped a lot on my bladder spasm. It also helps on some of my bladder pain, but I have no intention to put the acid food back to my diet.

As to your question about microwave, ultra sound, etc. I know using microwave at home is OK, but not sure about others. I think Medtronic has a pamphlet that states what should be avoided after the implant.

As I know, there are two different trials. What I have is called staged trial which has been recently approved by FDA. It requires a surgery to open your butt and implant the lead into your lower back. If the trial works well which means your frequency/urgency are siganificantly reduced. Then the doctor only needs to implant the device in the second surgery. If the trial fails, then the doctor will take the lead out surgically.

I know some people here had the old trials which the lead might move during the test. I heard the lead was only placed under the skin and taped on you. So if it doesn't work well, the doctor can pull the lead out without a surgery. I guess the lead is not placed very deeply in this trial. If the trial works great, then the doctor will still pull the lead out and then have a surgery to implant both the new lead and the device into your butt at the same time.

I was put to a full sleep during my first surgery. My doctor used an Xray to find the right nerve spot to insert the lead instead of asking me where I felt the stimulation. Both my doctor and the Medtronic rep thought putting me to sleep was better than having me awake because the procedure was too painful.

[rachelm]

Thanks Peiti, I think that my dr. is planning to do the old type trial because we are just doing this temporarily. I have no plans to have the actual perm. implant. I hope the leads don't move! That would suck! I'll talk with him more about this when I see him today.

[ICNJess]

Hi Rachel! How are you doing? Hanging in there I hope, I know I was VERY anxious about the stim!!

I had an ultrasound (internal and external) after my stim went in to check for ovarian cysts. So it is possible to have one done.

I had the new trial, the surgery took about an hour or so and it was painless. My leads didn't move during the trial but IF they do for some strange reason, you'll have to go in for a revision, where they'll put the leads back on to the sacrals.

Ummm about pelvic pain, you already know it's not gonna help with that, BUT a positive thing is that after the stim went in I was in a remission for a month or two. It was great. Now I still have pain, but no more retention, no more spasms, no more frequency, no more urgency. IC is a big mystery, and Interstim is too. But anyway Rachel, if you have anymore questions or anything my email is jesser@nnex.net and I'd love to be able to help out in anyway you can.

I know I drove Brat nuts during my InterStim adventures but now she loves me. wink LOL

Hugs and love,
Jess

[rachelm]

Jess, Thanks so much for being there for me. Yes I am anxious but I think it's the right thing to do. My fiance, Brian went with me today to talk to dr. England. He felt better about it after discussing his concerns about the recovery time. I've been in a really bad flare for about a month and I'm finally showing some improvement except I'm in total retention. I kept getting infections which set be back into really bad pain. Brian thinks I'm better because I can walk now but I'm still having quite a bit of spasms and pelvic pain if I sit or walk for long. He was concerned that the test stim implant would send me back into severe pain. My dr. eased his mind concerning the recovery. I've decided to take one more week off of work. I will have it done late Tu. and then rest for the week. I need to be carefull because he is inserting the lead through a needle instead of doing the stage trial where he implants the wires. He said if I get better he will take the wires out in 2 weeks. If I'm through me flare and O.K. then we won't do anything further for now but if my symptoms start up again then we will discuss a stage trial and possible perm. implant. We are trying to do the least invasive and perm. therapy possible. I just want to have my life back so in the end if that means giving it a try perm. then so be it.

I'm glad you can still have sonograms. I am 31, getting married in June and we will be planning to start trying for a baby in about 1 1/2 yrs. so I want to have that option. I have polycystic ovarian disease so I may have to deal with having one removed once I start having normal cycles again off of the pill. For now I take active pills continuosly so I don't have to worry about cysts.

Did you do the stage trial? You may have already answered that. He said since this type has an easier chance of moving he will put two wires in just in case one moves. Pray that it all stays in place like it's supposed to.

Is there anything I can do to help prevent the wires from moving? I know not to excercise or pick anything heavy up. No bending or stretching etc. Bathing will be the biggest challenge. We have a shower head that detaches so I can wash my hair with that and sponge off. I suppose I could sit on the side of the tub to shave my legs. Did it hurt to sit with the trial? I want to go back to work and I sit a lot to teach my small groups and 1 on one kids. I hope I'm not being a pest. I just keep thinking of questions. My dr. assistant is more available for questions than my dr. but she's great (his pa) and I trust her completely. Does it hurt to lay down on your back with the wires coming out? I've had a hard time sleeping on my side lately because of the hip pain. I'm worried about not being able to find a comfortable way to lay down. I'm sorry this was soooo long. Thanks for everything. I don't know what I would do without this board, especially when I'm having a tough time or starting a new treatment. :)

[peiti]

Rachel:

I remembered someone who had the old trial said no legs crossing during the trial.

Wish you the best.

[Mimi-in-Chicagoland]

There are new wires that self hook to tissue so they don't move...they cause the trial to be much more effective. If you notice that the implant works for a few days during the trial and then quits, you might want to have an x-ray done to see if perhaps it did move. I opted for the staged trial because I didn't want the wire to move.
The only pain I had when lying down was from the incision on my back.
Ultrasounds are ok--if you have your unit turned off. The website does warn against them, but I've not had a problem with them...I had my unit programmed so metal detectors don't bother it--the little magnets that come with the device won't work either. I've had complete ultrasounds of my whole body and several cat scans. The reason you can't have an MRI is because the magnet can heat up the wire and burn the tissue near your spinal cord...which could be bad and possible paralyze you. The only other thing you can't have done is Diathermy--it can also superheat the wire. This goes for anyone who has a wire in your body even if you don't have the unit implanted anymore.
If you don't notice any improvements during the trial, getting the device implanted won't do you any good. I think some reps say it gets better with time, but it really doesn't. I hope it works for you. I wouldn't get the wire wet--I had a problem with mine getting wet and corroding.

[rachelm]

Thanks Mimi,
You have all been so helpful! I think the reason my dr. doesn't want to do the stage trial is because we are hopeful that it will only have to be temperary. Are the new wires that hook to tissue the stage trial or is that something different? We're trying to avoid an incision if we can. I'll let you know how it goes.

[peiti]

As I understand, the lead used in the stage trial will be left in the body if the trial is successful and the patient agrees to have a full implant. This new lead has barbs which can hook on the tissues. I don't think the lead used in the old trial has barbs because there is a big chance that the lead might move (from other InterStimers' experience). Besides, you don't need a surgery to take the lead out if you have the old trial.

Here I quote a paragraph from
http://www.ichelp.com/TreatmentAndSelfHelp/ICAndInterStimTherapy.html, hope it can help you understand.

....." In the past, many patients have had inconclusive results following testing with a percutaneously (under the skin) placed, temporary test-stimulation lead. Because of the way it was placed, the percutaneous lead could move, yielding false negatives or inconclusive results. More recently, clinical researchers have determined that the percutaneous lead used in earlier screenings could move after placement and could yield false negatives or inconclusive results. With this new test, the implanted lead is used during both the screening and implant stages."

[ICNJess]

Hi Rachel,

I also have PCOS, that's why I had the ultrasound. About the trial, what I did was lay on my stomach to sleep, Or lay on my left side. But I mostly slept on my stomach. My wires were coming out the right side, so I had to be careful. This is gonna sound crazy, but after a few days you don't really even notice that you have wires coming out of your back LOL!

Ok you are not being a pest, trust me! You've got to ask these questions, and I am so glad that you are. :)

Personally, I have only one lead in, and it's on my left side. The right side only caused pain, so the doctor took it out during the implant. I just didn't hook it up to the box for long, I mean I tried it, but it just wasn't stimulating the correct nerve. I don't know if it moved after surgery or if I just didn't respond correctly during surgery. But the left side works like a charm anyway.

I guess the only thing I can say to do to prevent the wires moving, is be gentle with yourself. Don't over-exert yourself or anything like that. I didn't do a lot during the trial, I mostly stayed home and rested, only went out maybe once or twice. I was very self-conscious about the wires and my box, but really you can hide it well.

Bathing isn't all that hard, I had the detachable showerhead as well and I just flipped my head over the tub and washed my hair, then sponged up.

Ok if you have anymore questions, go for it! :)

Hugs and love,
Jess

[Teri]

I had both trials and I found the original one, the one that you are having, much easier than the staged trial. I will never understand why they call it the staged "TRIAL" when it is actually out and out surgery??????

My dr's order's were "go home and do NOTHING for a week" and that's exactly what I did. I didn't even wash my hair until the day I went to have the wire removed. I had a little bit of discomfort but not pain after. After the staged trial the pain was horrendous. And, it didn't work. Everyone has a different view regarding this but since I've had both, I just thought I'd throw in my 2 cents worth:O)

wishing you nothing but the best~

[rachelm]

Thank you everyone for your input and suggestions! You all are so helpful. Teri, I'm sure that's why my dr. suggested the trial where they insert the wires percutaneously because the staged trial is more invasive, painful and leads to permanent implant which is not our ultimate goal. I think I'm the only patient I've found where the dr. purposefully was only planning for the trial to be temp. and not lead up to perm. implant. Oh well. I'm comfortable with our decision and I think that this recovery will be easier than the one with the incision. My only concern is that he wants me to keep it in for 2 weeks and I'm only taking another 1 week off of work. I've already been out for 3 weeks and my students really need me to be back. Well we'll just have to wait and see how long I can make it without the wires moving. I'll be very careful!

Thanks for the tips on sleeping Jess. You all have been wonderful. Thank God for this board and all that participate!

Rachel

[littlebear]

Hi Rachel, I haven't responded before because I haven't had the procedure yet and have only just finished researching it. But, I have been reading your thread and I want to wish you the best of luck with your trial (on Tues.?). I hope that it gives you lots of relief asap. Keep us posted! We're all rooting for you! Sending you my very best wishes, little bear

[rachelm]

Thanks Little Bear! hi I will post as soon as I can after the surgery on Tu. I go to the hospital at 3:30 pm and the procedure is scheduled at 5:00. :rolleyes: I'm a little nervous but I keep hoping it will help. At this point I'll try just about anything. If something goes wrong we can always pull the wires out easily since its a trial and that is comforting to know. Everyone has been so helpful in responding to my questions and wishing me well. I hope you all realize how much this support is helping me through such a bad flare. Thanks everyone! grouphug

[littlebear]

Hi Rachel,

You're welcome! I'll be thinking about you tommorow and sending you good thoughts.

Your Dr. sounds like he's really on top of things
--and like he's really sensitive both to your discomfort and to trying the least agressive, but most effective treatments possible for your condition. That sounds very comforting. It also sounds like the risks are minimal and that the potential benefits are pretty substantial, which should provide some peace of mind too.

We're all behind you (you're so right, folks here are really great--someone's always here to answer questions, provide support, etc.)! Take it easy today and keep up the positive thinking (you really seem to have such a good handle on things)!

Best wishes, little bear

[rachelm]

Little Bear,
Thank you so much for the compliment! kissing You just brought tears to my eyes. I'm trying so hard to stay positive because when I loose it my body reacts in more pain and it just brings me down. I feel very isolated from my life because I've been stuck in this ***house for almost a month trying everything I know to do. My fiance has the dril down pat by now. He and I know exactly what to do when I wake up with a bad flare and we both worked together to ease the muscle tension, get pain under control etc. with stretches, meds, bladder washes etc etc. I didn't start getting too down until 2 weeks of bed rest went by and still no improvement. During this flare I've had 3 infections. I get over an inf. and about a week later just about the time I'm making some progress I get slammed with a ***infection. banghead It's so frustrating and I don't always feel like I'm doing the best job of keeping a positive outlook so your words of encouragement were very heartfelt. ((((huggs))) grouphug

I am so very fortunate to have the best uro who I really feel is looking for the most effective least invasive treatments available to us. It took me a few strikes out before I found the right one and it turns out he's a urogynocologist so he and his nurse practicioner will be able to see me through the process pregnancy when the time comes along with managing my I.C. treatments. My favorite assistant left the practice last week to persue a research job. Jennifer was amazing! She was really the one who cared for me and treated me most frequently. For the past 3 weeks she has seen me 4 days a week. Over the past year she guided me in choosing the best possible month to plan my wedding while my symptoms get better (summer), and most recently we discussed what month next year I will start going off my meds in prepration for trying to get preg. I'm so very sad not to have her any more. :( She had become a life-line for me and while I know dr. England is incredible he figures out the best treatment but his assistance carry out the treatments day to day. I really am disappointed that she didn't tell me before she left. I'm going to write her a letter letting her know how much I appreciated her so that can have some closure.

I hope I don't sound ridiculous but when you become so relyant on them for help you get emotionally attached to them as well.

Back to my original train of thought... You are sweet to offer such kind words. Thank you for your support during this time. I hope that the next time I'm on here I can report that I've had a successful procedure and maybe I'll even be feeling some of the results by then. I'll keep you posted.

Thank you all so very very much! kissing
Rachel

[ICNJess]

Anyone hear from Rachel yet?

[littlebear]

Hi Jess (you are so wonderful for caring about how other folks are feeling when you've only just made it through a "fiasco" recently yourself!). Haven't heard anything yet . . .

Hi Rachel, no thanks necessary. I understand everything you wrote completely and think that you've really accomplished so much--all the more so given everything you've been going through. I knew that you had been having a bad flare for a long time, but I didn't know about all the infections, etc. I'm sending you all my best wishes and am hoping that this line of treatment gives you some relief. Also, I read somewhere that chronic pain and illness often results in feelings of isolation. At the same time, I'm so glad that the boards are here because they are such a good reminder that you are not alone. Sending you all my best wishes, little bear

[peiti]

Rachel,

I don't live in the States, but heard about Dr. England from a friend who used to see him for IC.
He is a very compassionate doctor. I am glad you found him.

Best wishes. bunny

[tigger_gal]

hi rachel, thinking about you and hoping things went well.... hugs to you and prayers too
Brat

[rachelm]

Thank you so much everyone. You all have been wonderful!!! kissing

Little Bear, your right about the feeling of isolation. I think its partly due to not being able to participate in my normal life. I'm an extremely social person and love working with people so its been tough to be out of work for 4 weeks now.

I flew through the surgery with ease and was thrilled to be able to go pee on my own with no caths just a half hour after the rep turned me on. I'm still on a low setting about 1 but I keep moving it slightly to increse the stimulation gradually. The rep told us that we would need to do that over the course of the first few days. I was afraid I would feel it since I was not going to be completely out but I just remember them prepping me and then asking me later to describe where I felt it. The next think I knew I was waking up in recovery giving the nurses a hard time. I kept telling them that I could feel my body sliding some in the upright position of the bed and I was afraid that the wires would go out of place. The rep had warned me about scooting or sliding down into the seat of the car. They told me there was no way the wires could move because they were taped. I get frustrated with ignorant staff! I had to explain that it was the interal wires I had been told about and that I wanted to make this test last as long as I could so please don't make the wires move. It turns out that she thought the dr. did the stimulation in the o.r. and that now I was just going home without any interstim. She thought that a trial meant they took everything out before I leave. Ugh.!!! She was nice after I informed her. Brian says I can be a pain to deal with especially if someone challenges my understanding of my condition and treatment.

I have noticed a decrease in bladder pain and pelvic pain. Before I was finally given a shot of morphine prior to surgery I was in the worst pelvic pain and so I didn't know if it would help that at all. So far I have just felt a little pain in my hip after lying on my side and now some at the top of my inner thigh where my body sits on my legs. At least the bladder spasms are gone and I've had a good strong urine flow. The frequency has been normal too. I think I went 8 times today :)

I will share more as I can. I'm really sleepy now but I've got some questions to ask you interstim veterans later.

Thanks again for all of your thought and prayers. Jess I want to hear how your doing too. I was so worried this weekend. Is the morphine out of your system?

Love you guys!
Rachel grouphug

[dyno]

Rachel,
I am glad that things went well and hopefully this will take care of your problem. grouphug

[rachelm]

Jolene,
I am very hopefull for the first time in a long while. Thanks for caring! grouphug

Rachel

[tigger_gal]

Rachel,
What wonderful news :D .. I am so happy for you, if I could jump up and down with out pain I would eek .... told ya it wasn't bad lady wink keep us posted on your progress, and if you have any questions whats so ever you let me know wink ..
:D wwoohhoo yippe so happy for you :D
hugs
Brat

[rachelm]

Thanks Brat! I wish I could jump up and down too but I'm on strict dr. orders to stay still so I don't move the wires. wink

I'm pleasantly surprised about the pain relief so far. I am hurting some when I sit upright in the chair especially while I'm typing but it's nowhere near what it used to be.

I am only planning on leaving the leads in for 2 weeks if they don't move sooner. My dr. thinks I won't need to go to the stage 1 or permanent interstims. His thinking is that this will be enough to kick my bladder back into behaving but I'm doing so well on it I hate the thought of giving it up. We'll wait and see if I'm through the flare when we take the wires out. The most incredible thing has happened. I never used to feel empty, even when I was almost symptom free I was still very aware of my bladder. Now I pee and I feel EMPTY! :) It's a feeling new to me. I love it!!!

The only thing that's difficult now is making sure that I don't make a movement that would disturb the leads.

I'm wondering about a few things... I have the feeling only when I stand and walk that someone is pinching my but cheek or sticking a needle in it. It's only noticible when I walk but its not enough to bother me too much the rest of the time. I was wondering if that's something any of you experienced? I'm also wanting to go back to work next week- I teach a special reading program to 1st and 2nd graders and I'm really ready to get back. My office manager said that my dr. had to release me to full duty and I'm not sure if he will do that. I have so many times during the day where I have to reach to get things I use. I'm concerned I might pull the wires out of place. I though maybe my coworker that I share a room with could help me but now I'm not sure what dr. England will say. I'll wait and see how I'm doing.

Did any of you drive with your trial? I'm a little differnt than most of you because I don't have the stage one leads in that are less likely to move. He wanted to do it this way so he could easily remove the wires in his office.

Thank you all so very much! I'm sure I'll be bugging you about other questions as I think of them. grouphug

Rachel

[ICNJess]

Rachel, that is fantastic news! I had been thinking of you and wondering how you've been doing!!! I am sooo glad that everything went well for you! What'd we tell ya? It'd be a breeze! wink

Anyhoo, if you drive, you should turn your Stim off. Also, if your going to be reaching and stuff, I'm sure you'll be very conscious of those wires, and as long as the box or the wires don't get caught on anything you should be fine. I know I got caught on a door once lmao but the leads didn't move. Are you thinking of the permanent?

Thanks so much for checking on me, I am so glad to hear that you are doing so well!!!!

Hugs and love,
Jess

[rachelm]

I may do it permanently if my symptoms return after I take these out. Did you have the stage trial or the old trial?

I'm not as worried about getting the wires caught as much as I am about the inside wires moving out of place. Brian thinks I was being paranoid about it when I was barking at the nurses in recovery. What do you think?

The wires on my back are all taped down real good and I'm carefull with the wires coming out and attached to the unit. So far when I've changed clothes Brian has helped me but I've been doing fine getting my pants down carefully to go to the bathroom. He moved things down from shelves in the kitchen so I could reach thing. I guess you should know I'm very short so I'm used to stretching to reach up for things.
I'm 4'11 1/2" so I get up on my toes frequently to get to things. :p

Do you think I'll be o.k. going back to work with the leads in?

Thanks for all your thoughts and prayers. It really was a breeze! Yippee!!! hi

Rachel hi

[littlebear]

Hi Rachel, I'm so glad to hear that the procedure went smoothly and that you are feeling some relief! Hoorah! Best wishes, little bear

[sue041]

kissing
Hi Racheal, I am happy for you, I will keep you and all the friends in my prayers. Keep up the good work, don't push yourself.
God Bless. grouphug

[Teri]

Rachel~ I am SO glad that you are doing so well:D My dr told me that I didn't need to worry about how hi I turned up my box or how strong the sensation was.....as long as the desired effect was there so relax and enjoy;)

As for work, you have waited too long for this. Please don't do anything foolish by going back to work until you have no external wiring that could get caught on something.

sending tons of prayers and extra hugs~

[peiti]

Rachel

I am so glad for you that the trial helps you get some relief.

mm, I don't think driving at this moment is a good idea. can you have someone drive you to work? I had staged one trial, even it was less likely to move, my doctor still warned me not to drive. wink

[rachelm]

Teri,
Thanks, my nurse told me not to worry about the setting too. My wires are all taped up really good on my back and so far I've been careful with the slack that pugs into the unit. I'm mainly concerned about accidentally jarring the wire out of place and thus ending the effect of the stimulation. Since I do not have a stage trial the little hooks that pop out on the ends of the wires and connect to tissue aren't on mine. Thus I'm carefull not to bend, twist, reach etc. While my job doesn't require labor my medical release form that the dr. must fill out before I go to work says that I must be able to bend, lift light loads, stand, reach etc so my nurse doesn't think he'll sign it yet.

Today I had more noticable pain. I was still able to cut down on my meds but I still need them for pain. I was disappointed tonight when I felt some bladder burn and the next time I voided was the first time I didn't feel completely empty. My I.C. belly is a bit distended like it gets when I'm flaring. I'm considering going to the dr. for a heparin/marcaine bladder wash. The dr said I could do it if I still needed it after surgery. Do any of you that have Interstim get bladder washes. If so did you during the trial? And how often do you do it most of the time.

My nurse warned me that I will still experience highs a lows but it will be more manageable with the interstim. Should I be feeling some burning this soon after the trial started? I have to say the spasms I haven't felt since the surgery but sometimes I'm not aware that certain kinds of pain are actually spasms. Any input from those with the Stim would be so helpful.

Thanks everyone for thinking about me! kissing

Rachel

[lotsofgirls]

Hi Rachelm,
Good luck with the trial, I am hoping that you are feeling better. My pain specialist said interstim is an adjunct therapy and that the rest of the things that help should be continued, I would think that includes heparin/marcaine bladder washes.

Cath

[tigger_gal]

Hi Rach,
I had the stage trail so all my wires were in my body except the one wire out my left but cheek lmao I drove 2 days later :D ... I was very easy getting in and out of the vechile and turned my box way down wink ...When your trial ends you symptoms may come back.. but know you know how great the interstim is and may opt for the implant.. keep us posted.. grouphug
Brat

[rachelm]

Thanks, I know that my symptoms may come back if I'm not over this flare. I've still got some pain and my nurse agreed that I should probably still come in for bladder washes but I think I can cut back to 2-3 days a week instead of daily. It's such a drive 40 min. and my family and Brian won't let me drive on my own yet because for a while it was painful. So everyday that Brian isn't off my mom spends the day helping me out and taking me to the dr. She helped me take a shower for the first time today. The removable shower head broke just as I was getting in lmao so we had to go to another shower. I was able to keep my back fairly dry. In some ways I wish that I had done the stage trial but we always intended for this to be just a temporary treatment to get me through the worst of the flare. Now if I decide I need the permanent one I'll have to be off more work and I'm running out of days from the sick bank. My disability policy only covers me for 1/2 my paycheck so that's all I would have to fall back on. Anyway I've just got to hope for the best when the trial is over. Thanks for all your help.

A funny thing happened at the dr. office. I was getting dressed and I sat my unit in the chair beside me while I pulled up my pants. It fell off the chair and disconected. I couldn't bend down to get it so I called someone to help. I forgot to turn the stim down before plugging it back in and I jumped as soon as it reconnected. I scared the tech helping me half to death. lmao

Rachel