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 [email protected] 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/TreatmentAndSe...mTherapy.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. 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